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# FSHD Society

Empowering FSHD Patients, Accelerating FSHD Progress

## Sitemaps

- [XML Sitemap](https://www.fshdsociety.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Blog](https://www.fshdsociety.org/blog/)
- [Epicrispr Reports First Clinical Evidence of Increased Lean Muscle Volume in Patients with FSHD Following Treatment with EPI-321](https://www.fshdsociety.org/2026/06/26/epicrispr-pr-26-6-26/) - Press release originally published to Business Wire on June 26, 2026. For additional information and analyses: Nature, Vol 655, July 2, 2026 Lei Lei Wu's story for EndPoints News Pump You Up: Epigenetic Editor Drives Muscle Growth in FSHD Patients by Dr. Jonathan Grinstein, Inside Precision Medicine Single-Dose EPI-321 Demonstrated a Positive Safety Profile and
- [Chasing Justice and Butterflies: Ed Barocas Reflects on a Life of Purpose, Humor, and Hope](https://www.fshdsociety.org/2026/06/22/barocas-profile/) - One winter morning, attorney Ed Barocas arrived at a historic courthouse in Morristown, New Jersey, only to find himself waiting outside in the cold. Because he uses a wheelchair, he had to enter through a back entrance and rely on someone inside to respond to a button and open the door. More than 20 minutes
- [World FSHD Day - June 20, 2026](https://www.fshdsociety.org/2026/06/17/world-fshd-day-2026/) - Observed on June 20, World FSHD Day is a global movement to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, along with their families and friends, flood social media with orange slice selfies, light up landmarks in orange, and share
- [Colleen's Story: World FSHD Day Stories](https://www.fshdsociety.org/2026/06/18/colleens-story-world/) - Looking back, the signs were there long before I had a diagnosis. As a child, I had a curved posture, winging shoulder blades, high arches, and slept with my eyes slightly open. I was constantly told to stand up straight. I could never blow up a balloon. People noticed things that seemed unusual, but no
- [A Mother's Perspective: World FSHD Day Stories](https://www.fshdsociety.org/2026/06/17/mothers-perspective-world26/) - By Erin Folk In the spring of 2024, we began searching for answers about my daughter, Kinsley. At just 13 years old, she began losing muscle on the right side of her face. We first noticed her dimple had disappeared, and over time she grew increasingly self-conscious about her smile. By August 2024, doctors diagnosed
- [Living Beside FSHD: World FSHD Day Stories](https://www.fshdsociety.org/2026/06/12/kates-story/) - By Kathy Chase Read more of Kathy's writing on her Substack. People think they understand FSHD when they hear the words "muscular dystrophy." I thought I did too. I imagined weakness. Difficulty walking. Maybe a wheelchair someday. What I didn't understand was that FSHD is really a thousand losses that happen one at a time.
- [My FSHD Journey: From Fear to Hope, World FSHD Day Stories](https://www.fshdsociety.org/2026/06/16/my-fshd-journey-quigg/) - By Taylor Quigg I was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) in August 2014 while I was eight weeks pregnant with my second daughter. At the time, my oldest daughter was only one year old. The diagnosis completely rocked my world. I was scared, lonely, depressed, and ashamed. I felt overwhelmed by the uncertainty of
- [FSHD Society Hosts First-Ever Bilingual FSHD 360 Conference in Montreal ](https://www.fshdsociety.org/2026/06/29/montreal-360/) - By Ashley Ferreira On Saturday, May 31, the FSHD Society welcomed members of the FSHD community to Brossard, Quebec, for our Montreal FSHD 360 Conference. With 32 patients, family members, caregivers, healthcare professionals, and advocates in attendance, the event provided a full day of education, connection, and community building. The FSHD 360 program is
- [Why I joined BetterLife: A Q&A with Robert (Bob) Humphreys Jr.](https://www.fshdsociety.org/2026/06/18/why-i-joined-betterlife-humphreys/) - In honor of World FSHD Day this month, we are spotlighting our community member, Bob Humphreys, who shares with us how BetterLife has helped him on his journey. Note: Testimonials provided by study participants are personal experiences and do not necessarily represent the views of the trial sponsor. They are not a substitute for medical
- [Three Years. Ten Countries. One Shared Mission…What We Built Together ](https://www.fshdsociety.org/2026/06/25/project-mercury-reflections/) - Reflections from Mark Stone Three years ago, Project Mercury began with a simple but urgent realization: promising therapies for FSHD were advancing faster than the world’s ability to deliver them to patients. The science was accelerating. Clinical pipelines were growing. Hope was becoming tangible for families who had waited generations. But beneath that momentum sat
- [Volunteer Spotlight – Rick Whitehead - Knoxville, TN ](https://www.fshdsociety.org/2026/06/23/whitehead-spotlight/) - by Beth Johnston Meet Rick Whitehead from Knoxville, Tennessee! Rick has volunteered with the FSHD Society in several different capacities, and most recently is serving as the Facilitator for our Weekend Wellness Gathering Place community that meets on the last Saturday of the month. Tell us a little about yourself? I have an older brother
- [A Glimpse into Mental Health in FSHD: Early Insights from BetterLife](https://www.fshdsociety.org/2026/05/22/betterlife-mental-health-glimpse/) - by Kayleigh Worek, BetterLife FSHD Manager What BetterLife FSHD data is telling us this Mental Health Awareness Month Living with FSHD can impact more than just muscles. When asking people in our community about the hardest part of living with FSHD, answers often include worry, grief over changing abilities, and uncertainty. In recognition of Mental
- [Novartis Announces Positive Biomarker Results for Del-brax in FSHD](https://www.fshdsociety.org/2026/06/11/novartis-announcement/) - The FSHD community received encouraging news today as Novartis announced that delpacibart braxlosiran (del-brax) met the primary and key secondary endpoints in the biomarker cohort of the Phase 1/2 FORTITUDE clinical trial. Del-brax is an investigational therapy designed to target the root cause of FSHD by reducing the activity of DUX4. In this study, participants
- [The Better Nutrition for FSHD Diet](https://www.fshdsociety.org/2026/03/02/fshd-diet/) - By Selina Lai, MS, Nutritionist In the past year there have been 2 investigative surveys of the lead content of protein powder supplements published by The Clean Label Project1 and more recently by Consumer Reports2,3. The resulting analysis of protein powder supplements provided some alarming findings of elevated levels of lead, particularly in plant-based protein
- [Sarepta's letter to the FSHD community](https://www.fshdsociety.org/2026/03/25/sarepta-letter-fshd-community/) - On March 25, 2026, Sarepta shared the following letter to the FSHD Community: Dear Members of the FSHD Community, We are reaching out today for the first time to briefly introduce Sarepta and share an important update. Sarepta has been dedicated to developing meaningful therapies for rare diseases, having brought forward four therapies to treat
- [The FSHD Society, SOLVE FSHD, and the FSHD CTRN Announce Launch of Industry Collaborative to Improve FSHD Clinical Trials](https://www.fshdsociety.org/2026/04/08/industry-collab-launch/) - The FSHD Industry Collaborative is a first-of-its-kind, multi-stakeholder initiative designed to improve how FSHD clinical trials are designed, executed, and evaluated RANDOLPH, Mass. and VANCOUVER, BC, April 8, 2026 /PRNewswire/ -- The FSHD Society, a patient-driven organization advancing research and clinical development in facioscapulohumeral muscular dystrophy (FSHD), SOLVE FSHD, a venture philanthropic organization dedicated to
- [What a New Study on FSHD and Mortality Means for Our Community](https://www.fshdsociety.org/2026/05/18/fshd-mortality-litreview/) - by Amanda Hill, Research & Care Programs Officer at the FSHD Society, and Ally Roets, Parent, Caregiver, CureFSHD for All Advocate and Parents' Roundtable Leader Many of us in the FSHD community know someone who has passed away, sometimes seemingly too young, often from a fall or a respiratory problem that may have been
- [College is Possible, Preparation is Necessary](https://www.fshdsociety.org/2026/05/13/college-prep-fshd/) - College is possible. Preparation is necessary. by Wade C., FSHD Navigator Let’s start here: college is possible for students with FSHD. Yes, there might be some careers that aren’t realistic for people with FSHD—acrobat, coal miner, stonemason—but there are countless paths that are. Students with FSHD can absolutely achieve their academic and professional goals. The
- [Yoga for FSHD](https://www.fshdsociety.org/2026/04/23/yoga-for-fshd/) - Living with FSHD often means learning to build a tool kit of strategies that support both body and mind. For many people, yoga, meditation, and breathwork can be meaningful additions to that tool kit—offering gentle, adaptable practices that promote relaxation, reduce stress, and support overall well-being. One of the greatest strengths of meditation is its
- [Mental Health Awareness](https://www.fshdsociety.org/2026/04/28/mental-health-awareness/) - May is National Mental Health Awareness Month, a time to recognize that well-being includes both physical and emotional health. For individuals living with FSHD, mental health can be an important part of the journey, even if it is not always discussed as openly as physical symptoms. In the FSHD Society’s Voice of the Patient Report, many members of the
- [Passing the Torch in the Bay Area: Thank You, Kent and Sue Drescher, and Welcome, Sam Feldman](https://www.fshdsociety.org/2026/04/16/bay-area-chapter-leadership/) - The FSHD Society is deeply grateful to Kent and Sue Drescher for their years of dedicated service as leaders of the Bay Area Chapter. On Sunday, May 22, they officially passed the baton to Sam Feldman, marking both the close of an extraordinary chapter and the beginning of an exciting new one for the Bay
- [The All-Canada Chapters National Meeting – February 5th, 2026 ](https://www.fshdsociety.org/2026/03/31/the-all-canada-chapters-national-meeting-february-5th-2026/) - by Karen Camarta, Alberta Chapter Director The Canadian FSHD Community gathered on February 5th for the second Canada-Wide Chapter meeting, co-hosted by our Alberta and Quebec Chapters. The incredible turnout really showed how much our community cares about the future of FSHD patients and our drive to find a treatment! We had representatives from FSHD
- [How do hormones impact muscle function in FSHD?](https://www.fshdsociety.org/2026/03/23/hormones-fshd-effects/) - By Dr. Lucienne Ronco This is a question we often hear from FSHD patients. Human hormones, like estrogen, impact muscle health in general, not just in disease. In healthy muscle, they support muscle function and growth. This conversation intensified after a new paper by Dr. Silvia Maiullari found that estrogen might counteract DUX4 activity in
- [Roche stops development of Emugrobart](https://www.fshdsociety.org/2026/03/19/roche-stops-gym329/) - Dr. Lucienne Ronco, Chief Science Officer of the FSHD Society Originally published on March 19, 2026 Edited for clarity as of March 20, 2026 Today we received news that Roche will stop development and not proceed to a Phase 3 study in FSHD with their investigational therapeutic Emugrobart (known as GYM329 or RO7204239). Read Roche’s
- [Mirecule Expands Strategic FSHD Collaboration with Sanofi](https://www.fshdsociety.org/2026/03/21/mirecule-expands-with-sanofi/) - Originally posted to Business Wire on March 18, 2026 GAITHERSBURG, Md.--(BUSINESS WIRE)--Mirecule, Inc., a leader in Antibody RNA Conjugate (ARC) therapeutics targeting rare neuromuscular diseases, today announced an expansion of its strategic collaboration with Sanofi. This collaboration focuses on delivering transformative treatments for patients with Facioscapulohumeral Muscular Dystrophy (FSHD). Building upon the companies’ successful partnership
- [Letter to the FSHD Community from Roche](https://www.fshdsociety.org/2026/03/19/roche-letter/) - Dear members of the FSHD community, Following your request for updates about our FSHD clinical development programme, today I share the news that we have made the difficult decision not to advance emugrobart (an investigational anti-myostatin antibody, also known as GYM329) into Phase III development in FSHD. The decision to stop clinical activities for emugrobart
- [Organizations Join Forces to Map How Human Muscle Regenerates](https://www.fshdsociety.org/2026/01/27/mda-collaborative-grant/) - Press release originally posted to the MDA website on Jan. 27, 2026 Organizations Join Forces to Map How Human Muscle Regenerates Muscular Dystrophy Association-led research collaboration with FSHD Society, LGMD2L Foundation, and Parent Project Muscular Dystrophy to fund Abigail Mackey, PhD, at Copenhagen University Hospital to decode muscle regeneration. New York, Tuesday, January 27, 2026
- [Scholar Rock Highlights 2026 Strategic Priorities](https://www.fshdsociety.org/2026/01/13/scholar-rock-highlights-2026-strategic-priorities/) - January 12, 2026, Originally posted to Business Wire Highlights: Apitegromab Biologics License Application (BLA) resubmission and U.S. launch, following FDA approval, are anticipated in 2026 for the treatment of children and adults with spinal muscular atrophy (SMA) FDA has scheduled meeting with Catalent Indiana, LLC (part of Novo Nordisk) in early 2026 to discuss progress
- [Epicrispr Reports Early Clinical Activity and Favorable Safety Profile in First-in-Human Epigenetic Editing Study for FSHD](https://www.fshdsociety.org/2026/01/08/epicrispr-reports-early-clinical-activity-and-favorable-safety-profile-in-first-in-human-epigenetic-editing-study-for-fshd/) - Press release originally posted to Business Wire on Thursday, Jan. 8, 2026 at 8:00am. - Company to present at J.P. Morgan Healthcare Conference on Tuesday, Jan 13, 2026 - SAN FRANCISCO--(BUSINESS WIRE)--Epicrispr, a clinical-stage company pioneering gene-modulating therapies, today reported early clinical data from its ongoing first-in-human, open-label study evaluating EPI-321, an investigational epigenetic therapy
- [Remembering Howard Chabner](https://www.fshdsociety.org/2025/12/22/remembering-howard-chabner/) - by Mark Stone It is with deep sadness that I share the news that Howard Chabner, our Board Vice Chair and a longtime supporter of the FSHD Society, has passed away. Howard was many things to this organization: a tireless advocate; a passionate activist; a steady leader; and a generous supporter of our mission. He
- [Art's Call to Action](https://www.fshdsociety.org/2026/01/11/arts-call-to-action/) - Nov. 26, 2025 Exciting news this week: Altay Therapeutics’ DX5057 has received Orphan Drug status from the U.S. FDA. DX5057 is currently the only oral DUX4 inhibitor in development for FSHD, which makes this an especially important milestone. Orphan Drug status gives the company meaningful financial incentives to continue advancing the program. That said, there’s
- [RESTEM Announces First-Patient-Dosed in the Phase 1/2a Study of Restem-L in Facioscapulohumeral Muscular Dystrophy](https://www.fshdsociety.org/2025/12/08/restem-announces-first-dose/) - − First patient with facioscapulohumeral muscular dystrophy (FSHD) dosed with Restem-L umbilical lining modified progenitor cells (UMPCs) − The Phase 1/2a study will evaluate the safety and preliminary efficacy of Restem-L in patients with FSHD − Clinical study is funded by SOLVE FSHD MIAMI and VANCOUVER, British Columbia, Dec. 08, 2025 (GLOBE NEWSWIRE) -- RESTEM
- [Living Spiritually with FSHD: Finding Strength, Meaning, and Community](https://www.fshdsociety.org/2025/11/11/living-spiritually-with-fshd-finding-strength-meaning-and-community/) - In October, the FSHD Society launched Living Spiritually with FSHD, a new Gathering Place that welcomes anyone exploring how faith, spirituality, and a sense of meaning intersect with life with FSHD. Whether your diagnosis has reshaped your beliefs—or your beliefs help you navigate the day-to-day—this group offers a warm space for open conversation, reflection, and
- [Smart Home Technology for People with FSHD: Making Life Easier, Safer, and More Independent](https://www.fshdsociety.org/2025/11/20/smart-home-fshd/) - In October, our FSHD University hosted a webinar that explored how smart home technologies can transform daily life for people living with facioscapulohumeral muscular dystrophy (FSHD). Presented by community members Justin Hill and Don Burke, the session covered how even small steps toward home automation can enhance safety, accessibility, and comfort. A “smart home” uses
- [2025 Walk & Roll to Cure FSHD - Live Updates & Weekly Coverage](https://www.fshdsociety.org/2025/09/11/2025-walkroll-coverage/) - The 2025 Walk & Roll season has ended, but we've included all our weekly updates (photos, videos, news coverage, stats, and more) below. A huge and heartfelt thank you all our Walk Leaders, Chapter Leaders, Team Captains, and participants for your hard work and for making 2025 a phenomenal success. Together, we raised more than
- [Pushing Limits: Johnny Quintana, US Paralympic Athlete](https://www.fshdsociety.org/2025/10/28/pushing-limits-johnny-quintana/) - From diagnosis to Team USA, he keeps climbing By An Sasala, FSHD Society Johnny Quintana conquers challenges—and heights. A former football player and wrestler, Quintana regularly defies his doctor’s initial prognosis: that he could no longer be an athlete once diagnosed with FSHD. Diagnosed at 19, and now in his mid-30s, Quintana serves as a
- [Avidity Biosciences Acquired by Novartis](https://www.fshdsociety.org/2025/10/27/novartis-acquires-avidity/) - On October 26, 2025, Novartis announced that it has entered into an agreement to acquire Avidity Biosciences, Inc., marking another important advancement for the FSHD community. With this acquisition, Novartis, one of the world’s largest and most established pharmaceutical companies, now has two therapies for FSHD in its development pipeline. The alignment deepens Novartis and
- [2025 Fall Vaccines](https://www.fshdsociety.org/2025/10/25/fall-vaccine-guide/) - By Ranae Beeker, MSN, RN Written within the lens of awareness and the importance of respect. We understand that this topic is not of value to all of our community members, and we appreciate and respect that we all have agency to hold differing opinions and values. If information on Fall Vaccines is of interest
- [Building a Clinical Data Library](https://www.fshdsociety.org/2025/11/14/building-a-clinical-data-library/) - FOCUS will unify clinical trial, natural history, and patient data By Dr. Lucienne Ronco, FSHD Society As part of the Global FSHD Innovation Hub, the FSHD Society has undertaken the development of a clinical data library, the FSHD Open Collaborative Unified System (FOCUS). FOCUS will house all forms of FSHD clinical data whether derived from
- [Driving Breakthroughs for FSHD Treatments](https://www.fshdsociety.org/2025/11/05/driving-breakthroughs-for-fshd-treatments/) - No Time to Wait By Erin Saxon, FSHD Society Those living with FSHD face a harsh reality: this is a relentlessly progressive disease with no treatments to slow or stop it. That reality is on the cusp of change. With multiple therapies in clinical trials and more in the pipeline, we have entered a new
- [Advocates Secure New Avenue for Research Funding](https://www.fshdsociety.org/2025/10/24/advocates-secure-new-avenue-for-research-funding/) - A seat at the table: FSHD joins 66 conditions competing for $370 million in federal research grants By Anna Gilmore, FSHD Society The FSHD community secured a big win for research funding this year: Inclusion in the Peer-Reviewed Medical Research Program (PRMRP). Aside from being a tongue-twister of an acronym, the PRMRP is a federal
- [In Memoriam: Daniel Paul Perez](https://www.fshdsociety.org/2025/10/08/in-memoriam-daniel-paul-perez/) - Written by Howard Chabner, Board Vice Chair, and shared on behalf of the entire FSHD Society Board of Directors The Board of Directors of the FSHD Society is deeply saddened to announce that Dan Perez, co-founder and former President/CEO, died on October 2, 2025. He died as he wished – at home in Bedford, Massachusetts,
- [A Personal Tribute to Dan Perez](https://www.fshdsociety.org/2025/10/06/a-personal-tribute-to-dan-perez/) - While his family and our community morns the loss, I want to honor the life of Dan Perez, a man whose vision, determination, and heart changed the course of FSHD forever. When I first arrived at the FSHD Society 8+ years ago, Dan welcomed, educated, and armed me with the tools necessary to serve this
- [Christine Hoene: Always a Beginner](https://www.fshdsociety.org/2025/09/18/christine-hoene-feature/) - Christine’s father was diagnosed with FSHD in his late 40s. Four years later he was reliant on a cane and, within ten years, a wheelchair. When Christine herself was diagnosed at age 52, years after his passing, it was contrary to the impression their family had been under – that FSHD was a maternal gene
- [NIH funding for Facioscapulohumeral muscular dystrophy sets new record](https://www.fshdsociety.org/2016/03/30/nih-funding-facioscapulohumeral-muscular-dystrophy-sets-new-record/) - We have some good news to share on National Institutes of Health funding for FSHD. As part of the FSH Society's committee work in Washington, DC, we recently received FY2015 data release on NIH support for the muscular dystrophies and were very pleased to see actual 2015 fiscal year NIH funding support for FSHD research at
- [The flu season is upon us. Should you get the vaccine?](https://www.fshdsociety.org/2018/12/01/the-flu-season-is-upon-us-should-you-get-the-vaccine/) - FSHD patients may be concerned about the effect of injections on their muscles, and others worry about exposure to chemicals in vaccines, but FSHD medical experts agree that any potential risk is greatly outweighed by the benefits. "Please encourage them to all get the flu shot," said Kathryn Wagner, MD PhD, of the Kennedy Krieger
- [A Summer of Connection Across Our Chapters](https://www.fshdsociety.org/2025/09/16/summer-connection/) - by Jenny Gast, National Director, Chapter Programs, FSHD Society What makes our chapter network so meaningful isn’t the size of the events, but the spirit within them. This summer, each gathering, whether big or small, offered space for connection and understanding, reminding us that even simple moments together can bring strength, hope, and a sense
- [Summary of the Rare Trials Summit](https://www.fshdsociety.org/2025/09/18/summary-of-the-rare-trials-summit/) - Author: Dr. Raymond A. Huml, Vice President, Rare Disease Strategy, Sciensus The Rare Trials Summit in Boston, held on September 9 & 10, 2025, was the inaugural event driven by Rare Disease Research, an organization 100% dedicated to conducting clinical research, accelerating the development of safe and effective treatments, and providing rare disease patients with
- [Press Release: Epicrispr Biotechnologies Partners with Springbok Analytics to Integrate AI Muscle Analysis in First-in-Human FSHD Study](https://www.fshdsociety.org/2025/04/25/press-release-epicrispr-biotechnologies-partners-with-springbok-analytics-to-integrate-ai-muscle-analysis-in-first-in-human-fshd-study/) - Press Release Highlight: – Advanced MRI analytics to enhance early signal detection and inform development of first-in-class epigenetic therapy SOUTH SAN FRANCISCO, Calif.–(BUSINESS WIRE)–Epicrispr Biotechnologies, a biotechnology company focused on developing curative therapies, today announced a partnership with Springbok Analytics to incorporate advanced, AI-driven muscle MRI imaging and analysis into its first-in-human clinical trial of
- [Epicrispr Biotechnologies Doses First Patient in First-in-Human Clinical Trial of EPI-321 for Facioscapulohumeral Muscular Dystrophy](https://www.fshdsociety.org/2025/08/06/epicrispr-8-6-25/) - Press Release Highlights: - EPI-321 is the first investigational therapy designed to silence DUX4 expression via epigenetic modulation - FDA has granted Fast Track, Rare Pediatric Disease, and Orphan Drug Designation for EPI-321 in FSHD SOUTH SAN FRANCISCO, Calif.--(BUSINESS WIRE)--Epicrispr Biotechnologies, a clinical-stage company pioneering gene-modulating therapies, today announced that the first patient has been
- [Our Canadian Chapters are Growing!](https://www.fshdsociety.org/2025/08/23/our-canadian-chapters-are-growing/) - by Beth Johnston Earlier this month, we added the 4th Canadian Chapter to the roster of our growing FSHD Communities! The Quebec Chapter is led by father/son duo Sylvain and Louis-Vincent Côté, who live just outside of Montreal in Mont-Saint-Hilaire. We are thrilled that they have joined our ‘Army of Advocates’ to grow active communities
- [Leveraging Our Talented Community for Support and Collaboration](https://www.fshdsociety.org/2025/09/11/leveraging-community-for-support/) - By Ranae Beeker My name is Ranae Beeker, and I am responsible for facilitating, running, and moderating the Women on Wellness (WOW) support group. Over the past five years, our remarkable community of women has transformed into a close-knit family and friends network. In addition to the WOW group, I also help facilitate the Wellness
- [Muscle loss with Ozempic® and similar drugs](https://www.fshdsociety.org/2024/08/12/muscle-loss-with-ozempic-and-similar-drugs/) - What’s the risk to people with muscular dystrophy? by Rich Holmes, Sandwich, Massachusetts Heard about Ozempic, Mounjaro®, and related drugs and wonder if one might help you lose weight? That’s a decision you should make with your doctor, but be aware of three points: Weight loss typically includes both fat and some muscle. How much
- [DIY & Endurance Fundraising is Gaining Momentum!](https://www.fshdsociety.org/2025/08/21/diy-momentum/) - by Kim Shanley We’re only halfway through 2025, and it’s already been an incredible year for our DIY and endurance community at the FSHD Society. Kicking things off, Michael Ahlers conquered the legendary Triple Bypass ride, pedaling up and down the Rockies and raising almost $11,000 to help us power the path forward. On August
- [Living with FSHD can feel hopeless, but there are real ways to make a difference](https://www.fshdsociety.org/2025/08/17/living-with-fshd-can-feel-hopeless-but-there-are-real-ways-to-make-a-difference/) - by Sam Feldman If you have FSHD (or are close with someone who does), you probably know that mix of frustration, fear, and “will anything ever actually help?” I’ve been there, and the uncertainty of progression and potential future treatments (always so far away) can feel like the worst part. This Saturday, I attended an
- [Joanne Dalessandro has been busy!](https://www.fshdsociety.org/2025/08/12/joanne-feature-2025/) - by Chelsea Moeller, Development Director - FSHD Society Retiree Joanne Dalessandro has been busy – busier than she ever was during her 50-year career in sales. Between weekly medical appointments, fitness classes, and FSHD advocacy and fundraising efforts, she’s booked solid! It took 10 years of living with gait impairment for Joanne to be diagnosed
- [More Laughter, More Love: Reflections on an inter-abled relationship](https://www.fshdsociety.org/2025/08/12/more-laughter-more-love-reflections-on-an-inter-abled-relationship/) - By Leah Lee Originally posted to the Muscular Dystrophy Coalition Facebook Group on July 26, 2025. Loving someone with FSHD means learning to live in constant motion. Everything is always shifting. Emotionally, physically, and mentally. Joe is incredibly intelligent, thoughtful, and full of a deep, love for life. That part of him never fades. But
- [The 2025 Walk & Roll Season Is Almost Here](https://www.fshdsociety.org/2025/08/07/the-2025-walk-roll-season/) - By Jess Wright The 2025 Walk & Roll to Cure FSHD season is right around the corner, and we’re already feeling the excitement build. Across the country, teams are forming, plans are coming together, and communities are gearing up to walk, roll, and rally for a cause that matters deeply to so many. Walk &
- [Understanding the Physiatrist's Role in FSHD Care](https://www.fshdsociety.org/2025/08/13/physiatrist/) - By Ashley Ferreira Many patients have never heard of a physiatrist, and when they do, they ask themselves, "What do they do?" There are many different healthcare professionals that are part of the FSHD care team, but the role of the physiatrist is one that, although not often heard of, can play a critical role
- [Opening the Door to Better Research: A New Gateway for FSHD Scientists](https://www.fshdsociety.org/2025/07/22/opening-the-door-to-better-research-a-new-gateway-for-fshd-scientists/) - By Amanda Hill Sr. Director of Research & Care, FSHD Society Since we launched BetterLife FSHD in August 2024, the innovative platform has provided people living with FSHD in the United States a way to track their health, get matched with clinical research opportunities, and receive personalized resources. Through structured research surveys and tools like
- [Reflecting on my years with the FSHD Society](https://www.fshdsociety.org/2025/07/31/reflecting-on-my-years-with-the-fshd-society/) - By June Kinoshita As I step into a new chapter of my life, I find myself reflecting on the extraordinary 13-year journey I’ve had with the FSHD Society. What began as a leap into the unknown evolved into an experience that changed me personally and professionally—and, I hope, made a difference in the lives of
- [In Tribute to Ann Biggs-Williams: A Pillar of the FSHD Community](https://www.fshdsociety.org/2025/07/23/in-tribute-to-ann-biggs-williams-a-pillar-of-the-fshd-community/) - By June Kinoshita, FSHD Society It is with deep sadness and gratitude that the FSHD Society honors the memory of beloved community member and long-time volunteer, Ann Biggs-Williams, who passed away on July 20, at age 74. Ann lived her entire life in Alabama and worked as head librarian at Coastal Alabama Community College (formerly Jefferson
- [Answering your questions about BetterLife FSHD](https://www.fshdsociety.org/2025/06/16/answering-your-questions-about-betterlife-fshd/) - In case you missed it, the long-awaited and first-of-its-kind digital research and health platform, BetterLife FSHD, launched last fall. In our video below (scroll to the bottom of the page), Kayleigh Worek walks you through the basics and answers frequently asked questions. BetterLife was designed in partnership with people living with FSHD to be your
- [Don Nemke: Eight Decades of Determination](https://www.fshdsociety.org/2025/06/18/don-nemke-eight-decades-of-determination/) - by Chelsea Moeller Don Nemke recently turned 80. If you’re lucky enough to sit with him awhile, he’ll regale you with small town tales of 10-year-olds driving tractors and growing green beans on the family farm, brothers making their mark ski racing and playing high school baseball. You’ll hear about humble beginnings, hard-working parents, and
- [Breathing with FSHD, a talk by Dr. Joshua Benditt](https://www.fshdsociety.org/2025/07/21/breathing-with-fshd-a-talk-by-dr-joshua-benditt/) - https://www.youtube.com/watch?v=zQwTDcEOWWo This recent FSHD University webinar titled "Breathing with FSHD" features Dr. Joshua Benditt, a pulmonary and critical care expert at the University of Washington. He provides a comprehensive overview aimed at helping FSHD patients understand and manage respiratory symptoms effectively. Key points from the webinar for managing respiratory symptoms in FSHD include: Breathing Muscle
- [My Takeaways from the 2025 FSHD Connect Europe  ](https://www.fshdsociety.org/2025/07/15/connect-europe/) - By Rick Whitehead This past June, I had the opportunity to attend the inaugural FSHD Connect Europe meeting. Here are my takeaways from the conference that I would like to share with the community. Much of the conference content will be made available on the European FSHD website, so if you weren’t able to attend
- [Smiles, Science, and Solidarity: Our Experience at FSHD Europe Connect ](https://www.fshdsociety.org/2025/07/11/smiles-science-and-solidarity-our-experience-at-fshd-europe-connect/) - By Selina Lai, Pacific Northwest Chapter Director Our attendance at the Denver Patient Connect Conference last June inspired us to plan a summer trip to Europe to participate in the first-ever FSHD Europe Connect Conference in Amsterdam. We arrived in style—World FSHD t-shirts and my orange slice earrings—proudly representing our community. The fashion sparked photo
- [A Powerful First: FSHD Connect Europe Brings Together Community Across Borders ](https://www.fshdsociety.org/2025/07/10/fshd-connect-europe-powerful-first/) - By Ria de Haas, FSHD Europe FSHD Europe proudly hosted the first edition of FSHD Connect Europe, an event that marked a significant milestone for the European FSHD community. The meeting brought together 200 participants, patients, family members and caregivers, from 25 countries across Europe and beyond. This event created a unique opportunity for patients,
- [Piloting a New Format for Chapter Meetings: What We Learned and What’s Next ](https://www.fshdsociety.org/2025/07/09/piloting-a-new-format-for-chapter-meetings-what-we-learned-and-whats-next/) - By Jenny Gast, Director of Chapter Programs As the FSHD Society continues to grow, we’re reimagining how we connect our community across chapters. On June 25, we piloted a new Combined Chapter Meeting format for our East Coast chapters, part of a broader effort to create a more consistent and engaging experience for members nationwide.
- [World FSHD Day 2025](https://www.fshdsociety.org/2025/06/03/world-fshd-day-2025/) - World FSHD Day, a global movement to raise awareness of FSHD, occurs on June 20. From orange slice selfies and proclamations to lit up buildings, World FSHD Day was a rousing success in 2025! Please read below to learn more about everything that happened this year! 2025 was a huge success with more awareness raised
- [Breaking Down Avidity’s FORTITUDE Phase 1/2 Trial Update ](https://www.fshdsociety.org/2025/07/03/breaking-down-aviditys-fortitude-phase-1-2-trial-update/) - On June 24, 2025, Avidity Biosciences, alongside Dr. Nicholas Johnson, presented the much‑anticipated topline results from the FORTITUDE Phase 1/2 study of del‑brax (also known as delpacibart braxlosiran), during an FSHD University webinar. This clinical trial represents a significant step forward in targeting the root cause of facioscapulohumeral muscular dystrophy (FSHD) — and the initial findings are
- [Inside the 2025 International Research Congress on FSHD: Breakthroughs, Hope, and the Road Ahead](https://www.fshdsociety.org/2025/06/30/inside-the-2025-international-research-congress-on-fshd-breakthroughs-hope-and-the-road-ahead/) - By June Kinoshita, FSHD Society The 2025 International Research Congress (IRC) on Facioscapulohumeral Muscular Dystrophy (FSHD) convened June 12-13 in Amsterdam and online, gathering the world’s leading scientists, clinicians, and industry experts to share the latest advances in FSHD research and therapy development. This year’s congress highlighted not only the accelerating pace of scientific discovery
- [Gratitude on the pickleball court](https://www.fshdsociety.org/2025/06/26/gratitude-on-the-pickleball-court/) - By Angela Davis, Marquette, Michigan Do what you can, while you can. I always have had that mantra for my life. After being diagnosed with FSHD when I was 38 years old, I made sure to do the most that I could while I still had some muscle mass. When I turned 19 years old
- [Breaking News from Avidity Biosciences](https://www.fshdsociety.org/2025/06/09/avidityupdate/) - In early June 2025, Avidity shared promising results from their Phase 2 clinical trial. Participants who received the treatment showed noticeable improvements in strength and function compared to those on placebo, highlighting the therapy’s potential effectiveness. Even more exciting, Avidity has identified a circulating biomarker that, if approved, could accelerate access to treatment by up
- [2025 Young Investigator Prize winners](https://www.fshdsociety.org/2025/06/25/2025-young-investigator-prize-winners/) - Tessa Arends, PhD, and Katy de Valle, PhD, were awarded this year's Young Investigator Prize, announced at the 32nd Annual International Research Congress (IRC) on FSHD in Amsterdam earlier this month. The award recognizes outstanding junior researchers who are making significant contributions to FSHD research. Arends, a postdoctoral fellow at the Fred Hutch Cancer Center
- [Breaking News from Avidity Biosciences](https://www.fshdsociety.org/2025/06/09/breaking-news-from-avidity-biosciences/) - An announcement from Avidity Biosciences to the FSHD community: June 9, 2025 Dear FSHD Community, Today, we are very pleased to share multiple milestones related to the delpacibart braxlosiran (del-brax) program in facioscapulohumeral muscular dystrophy (FSHD). We have confirmed with the FDA that the accelerated approval pathway is open for del-brax in the U.S., initiated
- [How Fulcrum Therapeutics' Phase 3 REACH Clinical Trial Will Continue to Power the Path Forward ](https://www.fshdsociety.org/2025/06/10/how-fulcrum-therapeutics-phase-3-reach-clinical-trial-will-continue-to-power-the-path-forward/) - Author: Ashley Ferreira, FSHD Society The REACH Phase 3 clinical trial, conducted by Fulcrum Therapeutics, aimed to evaluate the efficacy of losmapimod in treating facioscapulohumeral muscular dystrophy (FSHD). Despite promising results in earlier phases, the trial did not meet its primary endpoint, leading to the discontinuation of the program in September 2024. The recent post-mortem
- [Understanding the FDA’s Orphan Drug Development Program: Why It Matters for FSHD and All Rare Disease Communities ](https://www.fshdsociety.org/2025/06/06/understanding-the-fdas-orphan-drug-development-program-why-it-matters-for-fshd-and-all-rare-disease-communities/) - Author: Dr. Raymond A. Huml Rare diseases affect millions worldwide, yet treatment options remain scarce. For families like ours who live with Facioscapulohumeral muscular dystrophy (FSHD) - the journey toward effective therapies is deeply personal. The U.S. Food and Drug Administration (FDA) offers a critical program known as the Orphan Drug Development Program, designed to
- [Against All Odds: The Early Heroes of the FSHD Society](https://www.fshdsociety.org/2025/05/26/against-all-odds-the-early-heroes-of-the-fshd-society/) - by Erin Saxon, FSHD Society A few months ago, I began an exciting project: capturing the stories of the early members of the FSHD Society. Since then, I’ve interviewed several remarkable people over Zoom and delved into early issues of FSH Watch to uncover the Society’s incredible history. While there are still more stories to
- [This is how we win](https://www.fshdsociety.org/2025/05/19/this-is-how-we-win/) - Every move we make drives us toward our goal By June Kinoshita, FSHD Society There is so much going on at the FSHD Society that for someone observing from the outside, it may seem overwhelming and unfocused. In truth, everything we do is intentional and part of a strategy to improve lives for people in
- [Suitcase Tetris, or how to travel with a disability](https://www.fshdsociety.org/2025/05/14/suitcase-tetris-or-how-to-travel-with-a-disability/) - By Amy Bekier, San Diego, California Traveling is supposed to be magical. Think sunsets in Santorini, surprise upgrades, and tiny shampoos you definitely don’t need but absolutely take. But if you travel with a disability, it can feel less “Eat Pray Love” and more “Survive Pray Don’t Break Anything.” I don’t fly often, but when
- [Brand Launch](https://www.fshdsociety.org/2025/05/01/brand-launch/) - A New Look. A Stronger Voice. The Same Mission. We’ve refreshed our brand to better reflect who we are, the impact we make together, and the future we’re building with the FSHD community. Why the Change? For individuals living with FSHD, every day is a fight to stay strong, independent, and optimistic. You’ve trusted us
- [International Women’s Day 2025](https://www.fshdsociety.org/2025/03/08/international-womens-day-2025/) - Celebrating Women in FSHD In honor of International Women’s Day, join us in celebrating many of the amazing women advancing research and creating community for folks living with FSHD. Thank you to these phenomenal advocates. We are grateful for your time, energy, care, and commitment. Ranae Beeker, Women On Wellness (WOW) Facilitator & Rockstar Volunteer
- [A tribute to Judy Seslowe](https://www.fshdsociety.org/2025/04/22/a-tribute-to-judy-seslowe/) - A transformative force for the FSHD Society by June Kinoshita, FSHD Society Judy Seslowe, whose life was marked by compassion, leadership, and unwavering commitment, passed away on April 13, 2025 at 82 years of age. She leaves behind a legacy that has profoundly shaped the FSHD Society and the broader community affected by facioscapulohumeral muscular
- [Hope in the laboratory](https://www.fshdsociety.org/2025/04/21/hope-in-the-laboratory/) - Taking back control of my destiny through research By Heloise Hoffmann, Standford University For the past year, I have been working alongside a team of fellow undergraduates at Stanford University to research a therapeutic approach for FSHD. Directing this project has taught me unique lessons in hope, resilience, collaboration, and the goodness of people. I
- [Epicrispr Biotechnologies achieves milestones in developing groundbreaking therapy for FSHD](https://www.fshdsociety.org/2025/04/10/epicrispr-biotechnologies-achieves-milestones-in-developing-groundbreaking-therapy-for-fshd/) - Epicrispr Biotechnologies, a South San Francisco-based biotech company, has announced two major advancements in its mission to develop transformative therapies for genetic diseases. The company secured $68 million in Series B financing and received FDA clearance for its Investigational New Drug (IND) application for EPI-321, a first-of-its-kind epigenetic therapy targeting facioscapulohumeral muscular dystrophy (FSHD). These
- [Avidity Biosciences Completes Enrollment in Biomarker Cohort in Phase 1/2 FORTITUDE™ Trial](https://www.fshdsociety.org/2025/03/31/avidity-biosciences-completes-enrollment-in-biomarker-cohort-in-phase-1-2-fortitude-trial/) - Letter from Avidity Biosciences to the FSHD community: Dear FSHD Community, Today, we are very pleased to share with you that we have completed enrollment in the biomarker cohort in the Phase 1/2 FORTITUDE clinical trial of delpacibart braxlosiran (del-brax/) in people living with facioscapulohumeral muscular dystrophy (FSHD). You can view our full press release
- [Aiming to access fresh funding for FSHD research](https://www.fshdsociety.org/2025/04/02/aiming-to-access-fresh-funding-for-fshd-research/) - We need YOU – to write to your senators by Anna Gilmore, FSHD Society Last year was an exciting one for our community as we launched our first FSHD Day on Capitol Hill! A small but mighty group of advocates succeeded in getting a House Resolution introduced with bipartisan sponsorship. They built valuable relationships with
- [Using HIPAA to Make Sure You Are Treatment Ready](https://www.fshdsociety.org/2025/03/26/using-hipaa-to-make-sure-you-are-treatment-ready/) - by William Saraille, Washington DC We hope we that in the not-too-distant future, treatments for FSHD will be approved by the Food and Drug Administration. But when that time comes, will you be treatment ready? Payers will likely insist, at a minimum, that any patient qualifying for coverage have the International Classification Disease Code (ICD-10)
- [The Care Connector](https://www.fshdsociety.org/2025/03/24/43788/) - Find resources near you by Anna Gilmore, FSHD Society Among the most frustrating interactions you can have with a new healthcare provider is realizing that they don’t know anything about your condition. For a long time, the FSHD community has asked for some kind of database of providers who have any level of FSHD knowledge.
- [Springbok Analytics Leads MRI Innovations in Multi-Site Pediatric FSHD Clinical Study](https://www.fshdsociety.org/2025/03/21/springbok-analytics-leads-mri-innovations-in-multi-site-pediatric-fshd-clinical-study/) - AI-Driven Muscle Analysis to Support MOVE Peds Study, Advancing Trial Readiness for Pediatric FSHD CHARLOTTESVILLE, Va., March 17, 2025 /PRNewswire/ – Springbok Analytics (www.springbokanalytics.com), a leader in AI-powered muscle analysis, today announced its role in MOVE Peds, the first large-scale clinical study focused on pediatric facioscapulohumeral muscular dystrophy (FSHD; NCT06847282). The study, led by top neuromuscular
- [Anesthesia in surgery for people with FSHD](https://www.fshdsociety.org/2025/03/11/anesthesia-in-surgery-for-people-with-fshd/) - This webinar discusses anesthetic considerations for patients with FSHD, emphasizing that each anesthetic plan is tailored to the individual patient and procedure. The speaker is Bruna Castro de Oliveira, a board-certified anesthesiologist and director of the orthopedic anesthesia service at Mass General Hospital. Working with Dr. Bassem Elhassan, she has participated in many scapular surgery
- [Rebounding exercises](https://www.fshdsociety.org/2025/02/26/rebounding-exercises/) - by June Kinoshita, FSHD Society At a recent Feeling Fit Zoom gathering, Cheryl Clulow, who had logged in from her home in Cape Town, South Africa, mentioned that she has derived a lot of benefit from “rebounding.” This was a new concept to me and I wanted to learn more. Rebounding, Cherly explained, is a
- [Press Release: FSHD Society Strengthens Leadership with Experts in Healthcare, Biotech, and Market Access](https://www.fshdsociety.org/2025/02/26/press-release-fshd-society-strengthens-leadership-with-experts-in-healthcare-biotech-and-market-access/) - FOR IMMEDIATE RELEASE RANDOLPH, Mass., Feb. 26, 2025 — The FSHD Society, a leading nonprofit dedicated to advancing research and improving the lives of individuals with facioscapulohumeral muscular dystrophy (FSHD), proudly announces the appointment of four distinguished members to its Board of Directors. The newest members, Mel Hayes, Chris Mancill, William (Bill) Sarraille, and Jason
- [2025 Volunteer Leadership Summit](https://www.fshdsociety.org/2025/02/19/2025-volunteer-leadership-summit/) - Powered by love and resilience by Beth Johnston, FSHD Society “It’s not just about giving back—it’s about growing, having fun, and being part of something truly impactful.​” – anonymous “Seeing so many faces (on my Zoom screen!) with enthusiasm, joy and eagerness…was just the uplift that I needed. I’m ready to roll forward.” – Ranae
- [You're invited! Mobility impact study](https://www.fshdsociety.org/2025/02/06/youre-invited-mobility-impact-study/) - Nils Hakansson (he also goes by Alex) and is a professor in the College of Engineering at Wichita State University. He has FSHD and is working on projects to help improve accessibility for people with disabilities. He is currently working with a team of professors (who also have disabilities) on a project that will help
- [The fate of the Fulcrum Phase 3 data](https://www.fshdsociety.org/2025/02/04/the-fate-of-the-fulcrum-phase-3-data/) - This invaluable data is coming to the FSHD Society by Lucienne Ronco, PhD, FSHD Society When a clinical trial fails, what happens to the data? It may include hundreds of thousands of measurements—blood chemistry, images, performances on physical tests, answers to questionnaires—collected from hundreds of participants over several years, at a cost of many millions
- [European Neuromuscular Centre Conference on Pediatric FSHD](https://www.fshdsociety.org/2025/01/29/european-neuromuscular-centre-conference-on-pediatric-fshd/) - by Ally Roets, Tucson, Arizona I was honored to attend the Pediatric FSHD European Neuromuscular Centre (ENMC) conference in Amsterdam, Netherlands, this past October. I was invited as a parent advocate and as a member of a global community striving for better care and outcomes for those affected by pediatric and early-onset FSHD. This workshop
- [Disability, Wildfire & Disaster Resources ](https://www.fshdsociety.org/2025/01/16/disability-wildfire-disaster-resources/) - The California Wildfires have disrupted life and displaced thousands. Natural disasters and other emergencies greatly impact individuals using power chairs/mobility aides and those who might need assistance to evacuate safely. As wildfires continue to devastate southern California, our hearts are with all those affected by this unimaginable tragedy. The scale of this disaster and its
- [Your practical guide to clinical trials](https://www.fshdsociety.org/2024/01/10/your-practical-guide-to-clinical-trials/) - by Amanda Hill, FSHD Society How do I find clinical trials that are recruiting participants? Our website is one of the best ways to find clinical trials that are recruiting. We will always have current information for you on our Clinical Trials web page. Another great way to find clinical trials is at clinicaltrials.gov. This
- [Big pharmas show growing interest in FSHD](https://www.fshdsociety.org/2024/12/31/big-pharmas-show-growing-interest-in-fshd/) - By June Kinoshita, FSHD Society The pharmaceutical industry is showing a growing interest in developing therapies for facioscapulohumeral muscular dystrophy (FSHD), a rare genetic disorder affecting an estimated one million people worldwide. This trend is evident through recent high-profile deals between major pharmaceutical companies and smaller biotechnology firms specializing in FSHD and other muscle conditions.
- [Fundraise YOUR way](https://www.fshdsociety.org/2025/01/06/fundraise-your-way/) - by Kim Shanley, FSHD Society At the FSHD Society, we know that every advance is made possible by the incredible support of people like you. One way you can join the fight is through our DIY fundraising program, which allows you to create events that are as unique and creative as you are. Whether it’s
- [A passion for adventure and advocacy](https://www.fshdsociety.org/2024/12/30/a-passion-for-adventure-and-advocacy/) - Don Burke recently completed a remarkable 93-day road trip, covering 28,000 miles across 36 states and four Canadian provinces in his electric vehicle. This journey is part of why he decided to retire early. “This trip was a bucket list adventure,” he said, “and it reminded me just how much is still out there to
- [Speaking honestly](https://www.fshdsociety.org/2024/12/23/speaking-honestly/) - Originally from the Midwest, Chelsea Moeller now calls Maine home, where she lives with her husband, daughter, and their 125-pound Newfoundland, Del. The close-knit community of her town makes it an ideal place for her family. Chelsea also shares a deeply personal connection to FSHD, navigating life with the condition herself. Her journey inspired her
- [FSHD is not for cowards](https://www.fshdsociety.org/2024/07/29/fshd-is-not-for-cowards/) - There was plenty of ingenuity and grit on display in Denver by June Kinoshita, FSHD Society Many scientists who work on FSHD spend their days bent over test tubes and computers, so this year's International Research Congress (IRC), on June 13-14, opened with a bracing talk by Jeff Johnston, who has lived with the diagnosis
- [Epic Bio takes aim at DUX4](https://www.fshdsociety.org/2022/10/28/epic-bio-takes-aim-at-dux4/) - Updated 12-12-24 to reflect the chance in name from Epic Bio to Epicrispr Biotechnologies. Leading-edge CRISPR biotech chooses FSHD as its first disease target Epicrispr Biotechnologies, based in the San Francisco Bay Area, announced that FSHD is the first disease it plans to take on with its proprietary CRISPR technology. Founded by Stanley Qi, PhD,
- [Orphan drug designation for Epic Bio's FSHD candidate](https://www.fshdsociety.org/2023/11/16/orphan-drug-designation-for-epic-bios-fshd-candidate/) - Updated 12-12-24 to reflect the chance in name from Epic Bio to Epicrispr Biotechnologies. Read the full news release here. SOUTH SAN FRANCISCO, Calif., Nov. 16, 2023 (GLOBE NEWSWIRE) -- Epicrispr Biotechnologies, a biotechnology company developing therapies to modulate gene expression using compact, non-cutting dCas proteins, today announced that the U.S. Food and Drug Administration (FDA)
- [A personal mission to advance research](https://www.fshdsociety.org/2024/12/16/a-personal-mission-to-advance-research/) - Amanda Hill, a Colorado native, lives with her husband, Justin, and their two dogs in the Denver area. Together, they share a love for travel, great food, and discovering new spots in their local dining scene. Professionally, Amanda has built a career in biomedical research, where her knack for project management led her to roles
- [Science with a heart](https://www.fshdsociety.org/2024/12/12/science-with-a-heart/) - Lucienne Ronco’s journey is a testament to the power of curiosity and compassion. With roots in the Pocono Mountains of Pennsylvania, she embarked on a path that would lead her to the forefront of rare disease research and drug discovery. Her academic quest took her from Tufts University to the University of California, Los Angeles,
- [Putting a lifetime of lawyering to work for our community](https://www.fshdsociety.org/2024/12/09/putting-a-lifetime-of-lawyering-to-work-for-our-community/) - “I couldn’t do a chin-up to save my life,” Bill Sarraille recalls of his third-grade self. This did not deter him from sports, but he was plagued by mysterious pains in his back, hip, and knees. Then, when he was in law school, he was unable to pivot in the middle of a football game.
- [Connecting generosity with purpose](https://www.fshdsociety.org/2024/12/02/connecting-generosity-with-purpose/) - Carolyn Lloyd’s journey as chief development officer of the FSHD Society reflects her lifelong commitment to service and empathy for those affected by chronic illness. Her role as a caregiver for her mother, who had multiple sclerosis, taught her firsthand about the complexities of chronic conditions. “I understand the challenges not just for the individual,
- [Meet Michelle Mellion, MD, our medical advisor](https://www.fshdsociety.org/2024/11/18/meet-michelle-mellion-md-our-medical-advisor/) - Finding a way around all obstacles by June Kinoshita, FSHD Society One lesson Michelle Mellion, MD, absorbed from seeing patients at a Muscular Dystrophy Association (MDA) neuromuscular clinic is that people with FSHD “are great adapters, using what they can and taking what they have learned about themselves and FSHD to overcome any challenges to
- [The Global FSHD Innovation Hub](https://www.fshdsociety.org/2024/11/29/the-global-fshd-innovation-hub/) - Accelerating clinical trials and access to treatments by Lawrence Korngut, MD, and Blaine Penny, Calgary, Canada This is a very exciting time for the FSHD community, as new therapeutics are advancing through clinical development and the global patient community is coming together to collaborate as part of new initiatives. This began with the FSHD Society
- [Why I exercise](https://www.fshdsociety.org/2024/12/05/why-i-exercise/) - To keep myself fit, ready, and aware of changes in my body by Frank Hanley, Bolivia, North Carolina This is an exciting time for us. The research, clinical trials, and recent announcements by pharma companies bring increasingly optimistic news that treatment for FSHD is getting closer by the day. As research and development move forward
- [Avidity Biosciences announces Phase 1/2 trial for FSHD](https://www.fshdsociety.org/2022/09/29/avidity-biosciences-announces-phase-1-2-trial-for-fshd/) - Trial has FDA approval. Start dates and locations have not yet been determined. Update as of 11/21/2024: AOC 1020 is now being referred to as Del-brax. San Diego-based Avidity Biosciences announced this morning that it plans to launch a Phase 1/2 clinical trial of AOC 1020 in adults with FSH muscular dystrophy this year in
- [The remarkable origins of FSHD research in America](https://www.fshdsociety.org/2020/11/16/the-remarkable-origins-of-fshd-research-in-america/) - by Allison Calder, Salt Lake City, Utah Did you know the first grant ever paid out by the United States National Institutes of Health (NIH) was awarded to study FSHD? Maybe you are as shocked as I was when I first heard this while sitting in a family conference at the University of Utah a
- [XPRIZE for FSHD research](https://www.fshdsociety.org/2024/11/16/xprize-for-fshd-research/) - SOLVE FSHD, a venture philanthropic organization established to catalyze innovation in Facioscapulohumeral muscular dystrophy (FSHD) research, is partnering with the nonprofit organization XPRIZE Foundation to host a global competition to remove barriers and accelerate development of novel therapies for FSHD. XPRIZE Healthspan is a 7-year global competition, with a $111-million total prize purse distributed across
- [FDA Patient Listening Session](https://www.fshdsociety.org/2024/11/14/fda-patient-listening-session/) - Upper body mobility: A crucial focus in FSHD treatment by Anna Gilmore, FSHD Society On August 23, 2024, the FSHD Society brought a fresh perspective to the Food and Drug Administration’s (FDA’s) attention during a Patient Listening Session focused on upper body mobility in facioscapulohumeral muscular dystrophy (FSHD). The session aimed to shift the conversation
- [Changemaker: Marisa Spain](https://www.fshdsociety.org/2024/11/25/changemaker-marisa-spain/) - Advocacy with humor and hacks Marisa Spain has a knack for making everyday advocacy both fun and impactful. Based in southeastern Michigan, Marisa brings fresh energy to accessibility awareness with her unique YouTube channel, Disabled in Nature, where she reviews public restrooms for accessibility in a series called “When Nature Calls.” Her witty take on
- [Getting treatments to young patients](https://www.fshdsociety.org/2024/11/21/getting-treatments-to-young-patients/) - MOVE Peds is essential to pave the way by Natalie Katz, MD, and Katy de Valle, research physical therapist More than 50% of people with FSHD develop symptoms as children or teens. When treatments to slow or stop FSHD are approved, common sense suggests that it will be best to treat patients as early as
- [Changemaker: Archer Sverdrup](https://www.fshdsociety.org/2024/11/12/changemaker-archer-sverdrup/) - Building an early-onset community Meet Archer Sverdrup, a St. Louis native with a love for power soccer, arts and crafts, and hanging out with their loyal German Shepherd, Blue. Archer recently joined a power chair soccer team, where they enjoy the thrill of the game and the camaraderie it brings. Living with symptoms of FSHD
- [Teaching medical students is therapeutic](https://www.fshdsociety.org/2024/11/08/teaching-medical-students-is-therapeutic/) - by Brian Jude Loiacono I have been volunteering to teach second-year neurology students about Facioscapulohumeral Muscular Dystrophy (FSHD) at the Renaissance School of Medicine at Stony Brook University. This is my fifth year of doing this, and I've discovered that this has been a source of self-help and motivation for me in managing my struggles
- [Working out with a personal trainer](https://www.fshdsociety.org/2024/10/31/working-out-with-a-personal-trainer/) - https://www.youtube.com/watch?v=4d9FX9hhKCY The Feeling Fit Zoom community hosts twice-monthly Zoom sessions about exercises tailored to the needs of individuals with FSHD. The group hosted recent discussions about the role of personal trainers and how they differ from physical therapists. Physical therapists are licensed medical practitioners. One typically needs a doctor to prescribe PT, and the cost
- [Avidity begins Cohort C enrollment in FORTITUDE trial](https://www.fshdsociety.org/2024/10/30/avidity-begins-cohort-c-enrollment-in-fortitude-trial/) - Avidity begins Cohort C enrollment in FORTITUDE trial Avidity Biosciences has begun enrollment of Cohort C of the Phase 1/2 FORTITUDE™ clinical trial. Below is Avidity's letter to the FSHD community and their answers to some FAQs: October 30, 2024 We are very pleased to share with you that we have initiated a biomarker cohort
- [Are you prepared for an emergency?](https://www.fshdsociety.org/2024/10/07/are-you-prepared-for-an-emergency/) - The catastrophic impact of Hurricane Helene is a sobering reminder of the importance of being prepared for disasters and the special care people with disabilities need to take. One handy reference is this Disaster Preparedness Guide for Older Adults. The guide is relevant to anyone with mobility and sensory challenges. The America Association of People
- [Feeling Fit with low-impact seated exercises](https://www.fshdsociety.org/2022/12/08/feeling-fit-with-low-impact-seated-exercises/) - https://youtu.be/Di8nQxF_ymg?t=75 Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. This week's leader, known by her Instagram handle @FSHD Wellness is a fitness enthusiast and active member of the international FSHD Instagram online community. She brings her experience as a former
- [Mighty micro RNAs](https://www.fshdsociety.org/2024/10/08/mighty-micro-rnas/) - by Yi-Wen Chen, PhD, Children's National Hospital, Washington DC Many Nobel Prize-winning discoveries have contributed to the advancement of research and treatments for facioscapulohumeral muscular dystrophy (FSHD), and the work recognized in yesterday’s announcement follows in this tradition. The Nobel Committee awarded the 2024 prize in physiology and medicine to Victor Ambros of UMass Chan
- [Aging in place - Tips for planning ahead](https://www.fshdsociety.org/2024/09/25/aging-in-place-tips-for-planning-ahead/) - Notes by Helen Cave on behalf of the Wellness Hour Life brings change. Life would be boring if it didn’t encompass change. Yet the changes that FSHD brings to us are more intense than most—-if not all—-of us would voluntarily choose. Adjusting to life with FSHD is an ongoing process. In some ways it helps
- [A note to our families from CEO Mark Stone](https://www.fshdsociety.org/2024/09/12/a-note-to-our-families-from-ceo-mark-stone/) - A note to our families This morning, Fulcrum released top-line results of its phase 3 trial for Losmapimod. The results showed no difference between placebo and active ingredient groups. Therefore, Fulcrum is suspending future Losmapimod development. This news is disheartening and as a community, we will need time to process this development. But we will
- [Fulcrum halts losmapimod development](https://www.fshdsociety.org/2024/09/12/fulcrum-halts-losmapimod-development/) - Fulcrum halts losmapimod development by June Kinoshita This morning, we received news Fulcrum has decided to halt its development of losmapimod (see press release below). Fulcrum’s decision was based on analysis of data from the Phase 3 REACH trial. The REACH data reported small improvements in Reachable Workspace (RWS) not only in people taking the
- ["Good Bad Things" is for everyone](https://www.fshdsociety.org/2024/09/16/good-bad-things-is-for-everyone/) - by June Kinoshita, FSHD Society “Nothing about us without us” has been the mantra of disability rights advocates for decades, but when it comes to Hollywood, the number of feature films about disabled characters that were written or acted in by people with disabilities can be counted with the fingers on one hand (or the
- [Muscle regeneration research](https://www.fshdsociety.org/2024/09/05/muscle-regeneration-research/) - A complementary approach for FSHD therapeutics by Justin Cohen, New Haven, Connecticut This is an exciting time for facioscapulohumeral muscular dystrophy (FSHD) patients, with many therapeutics entering clinical trials. Most of these focus on targeting DUX4, the toxic protein that causes the disease. However, other approaches are also entering the clinic, including muscle regeneration to
- [Genetic testing for FSHD—a new frontier](https://www.fshdsociety.org/2020/03/11/genetic-testing-for-fshd-a-new-frontier/) - Several genetic diagnostics labs now offer a test called whole-genome optical mapping for FSHD Type 1. Some also offer a neuromuscular panel that includes FSHD Type 2. These are major advances in FSHD molecular diagnostic testing that are now available for your doctor to order. A genetic test for FSHD is now being offered by
- [Remembrance of Lilleen Walters](https://www.fshdsociety.org/2024/08/29/remembrance-of-lilleen-walters/) - by Kathryn Wagner, MD PhD I lost my dear friend, Lilleen Walters to FSHD in August. Lilleen and I met approximately 20 years ago when she and her young son, Collin, came to my clinic at Johns Hopkins for care. I remained their neurologist for many years as they followed me from Hopkins to Kennedy
- [Why put off getting hearing aids?](https://www.fshdsociety.org/2024/08/27/why-put-off-getting-hearing-aids/) - They’re now more affordable and available by Richard Holmes, Sandwich, Massachusetts If you’re straining to hear what people say, or find yourself cranking up the volume on your TV to the point others find loud, you probably need hearing aids. High-frequency hearing loss, often mild, may occur in more than half of people with FSHD,
- [It’s alive! It’s alive!](https://www.fshdsociety.org/2024/08/19/its-alive-its-alive/) - A space-age solution for eating soup by Amy Bekier, San Diego, California Hello, my fellow slurpy, sloppy FSHD superhero eaters! For many of us with FSHD, as our hands, wrists, and arms grow weaker, it becomes quite difficult to raise an eating utensil to our mouths. Even when we succeed by using both hands, the
- [Better Nutrition for FSHD](https://www.fshdsociety.org/2024/07/29/better-nutrition-for-fshd/) - The foods you eat impact your disease and can support improved muscle function in combination with supplementation and exercise. Using real FSHD patient food records, we will explore the journey to better nutrition for FSHD and discuss the dietary choices that we make each day. Selina Lai, our Pacific Northwest Chapter director, has a registered
- [FAQs about genetic testing for FSHD](https://www.fshdsociety.org/2020/01/21/faqs-about-genetic-testing/) - Julie Cohen, ScM, genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute in Baltimore, Maryland, answers some commonly asked questions. Q. What is the genetic cause of FSHD? Let me begin by saying that the genetics of FSHD is quite complex! There are two types of FSHD, called Type 1
- [Ten things I wish someone had told me...](https://www.fshdsociety.org/2024/07/08/ten-things-i-wish-someone-had-told-me/) - ...when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every couple of months another decline will happen. Once you stop trying to predict progression and just focus on living your life you will be happier.
- [Updated medic alert card](https://www.fshdsociety.org/2024/07/03/updated-medic-alert-card/) - We have released a new version of our Medic Alert Card, with the gracious assistance of Ranae Beeker, RN, Helen Cave, and Dr. Joshura Benditt, a pulmonologist at the University of Washington. Anyone with FSHD should carry this wallet card, especially if they have breathing issues. In addition to providing space to enter your emergency
- [Advocating for Change on Capitol Hill](https://www.fshdsociety.org/2024/06/26/advocating-for-change-on-capitol-hill/) - A Day of Impact in Washington, D.C. On May 8th, the FSHD Society held its first-ever Day on Capitol Hill in Washington, D.C. This milestone in our advocacy efforts brought together over a dozen individuals living with FSHD and their families from across the country to have their voices heard by legislators. Throughout the day,
- [Meet del-brax, Avidity's FSHD therapeutic candidate](https://www.fshdsociety.org/2024/06/26/meet-del-brax-aviditys-fshd-therapeutic-candidate/) - https://youtu.be/7U7SMTAEFc4 Results presented by Avidity of interim data from its Phase 1/2 clinical trial in FSHD were all the buzz at this year's International Research Congress and FSHD Connect conference. We also wrote about it on our blog. If you missed those meeting, you could catch it in our FSHD University webinar on June
- [Avidity shares interim data from its FORTITUDE trial](https://www.fshdsociety.org/2024/06/14/avidity-shares-interim-data-from-its-fortitude-trial/) - “Unprecedented” and “consistent” reductions in DUX4 activity along with improvements in strength and function by June Kinoshita, FSHD Society Avidity Biosciences, Inc., a San Diego-based biopharmaceutical company, announced this Wednesday, June 12, that its investigational therapy for facioscapulohumeral muscular dystrophy (FSHD) reduced by more than 50% the expression of genes that are regulated by DUX4—widely
- [Teachable moments](https://www.fshdsociety.org/2024/06/06/teachable-moments/) - How do we deal with uncertainty in a positive, productive manner? from the Women on Wellness group. Adapted from notes by Ranae Beeker, RN At our meeting in May, our group had a wonderful discussion about how and what makes us feel a sense of purpose and gives us a sense of autonomy and identity.
- [FSHD Cycling Team to ride again](https://www.fshdsociety.org/2024/05/28/fshd-cycling-team-to-ride-again/) - George Pollock is tackling the Triple Bypass this July Click HERE to donate to George's ride Audacious in its ambition and breathtaking in its logical execution, Team FSHD Cycling first captured our attention and our hearts in 2017 when its founder and leader, George Pollock, Jr., decided he would recruit a group of friends to
- [Nerve mobility and pain](https://www.fshdsociety.org/2024/05/29/nerve-mobility-and-pain/) - Our May Feeling Fit Zoom group featured Arielle Levy, a physical therapist from Re+Active Physical Therapy founded by Julie Hershberg (a legend in the FSHD community). Following the introductory information below, you'll find a downloadable list of her exercises and the video of the Zoom session. We see a lot of postural impairments that come
- [David Glass elected to the National Academy of Sciences](https://www.fshdsociety.org/2024/05/16/david-glass-elected-to-the-national-academy-of-sciences/) - Co-chair of the Society’s Scientific Advisory Board receives one of highest honors in science The FSHD Society is proud to share the news that David J. Glass, MD, co-chair of its Scientific Advisory Board, has been elected to the National Academy of Sciences (NAS). Election to the Academy is an award granted to scientists that
- [Tips & tricks for standing up](https://www.fshdsociety.org/2024/04/11/tips-tricks-for-standing-up/) - A common household material keeps my feet from slipping by Bill Maclean, Blue Bell, Pennsylvania As FSHD progresses, many find that standing up becomes more difficult. As a result, one must find new approaches to accomplishing this feat. In many cases the body simply transitions to an approach that works. It might require your legs
- [Fulcrum Therapeutics and Sanofi to collaborate](https://www.fshdsociety.org/2024/05/14/fulcrum-therapeutics-and-sanofi-to-collaborate/) - Sanofi receives exclusive rights to commercialize losmapimod in all territories outside the U.S.; Fulcrum retains full U.S. commercialization rights Read the full news release here CAMBRIDGE, Mass., May 13, 2024 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc.® (Fulcrum) (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on developing small molecules to improve the lives of patients with genetically
- [Connecting to others is essential to your health](https://www.fshdsociety.org/2024/04/25/connecting-to-others-is-essential-to-your-health/) - Friendships are built intentionally by Gregg Lichtenstein, Margate City, New Jersey The 1970s band Three Dog Night proclaimed that “One is the loneliest number that you’ll ever do.” For all of us, particularly those with a challenge like FSHD, it is all too easy to relate to this song – unless we establish strong relationships
- [Calgary 360 slides](https://www.fshdsociety.org/2024/04/07/calgary-360-slides/) - Here are the slides from the Calgary FSHD 360 meeting on March 16, 2024. Welcome! What is a 360? What is the CTRN? Beth Johnston, FSHD Society, and Neil Camarta, FSHD Canada Fdn. FSHD 101 and overview Lawrence Korngut, MD, University of Calgary FSHD genetics and genetic counseling Gerald Pfeffer, MD PhD, University of Calgary
- [Is MRI the "holy grail" for FSHD clinical trials?](https://www.fshdsociety.org/2024/03/29/is-mri-the-holy-grail-for-fshd-clinical-trials/) - The MOVE+ study aims to find out. Participants needed! by June Kinoshita, FSHD Society Imagine that you are in an FSHD clinical trial a few years in the future. On the first day of the trial, you answer a few questions about how you are feeling and functioning. Then you lie down on a narrow
- [Distended belly with FSHD:  A surgical reconstruction](https://www.fshdsociety.org/2024/03/28/distended-belly-with-fshd-a-surgical-reconstruction/) - …and perhaps refinements yet to be discovered. A first step. by Rick Whitehead, Knoxville, Tennessee I promoted using a double compression abdominal belt for years but was always looking for another solution. At age 66 I decided that I needed to find a surgeon willing, and hopefully covered by insurance, before it was too late.
- [Marijuana and CBD](https://www.fshdsociety.org/2024/03/19/marijuana-and-cbd/) - The Young Adults Zoom group hosted a session last night (March 18) with guests Claire Szabo-Casella and Lou Casella. They shared their experiences using cannabis-based products to address a variety of FSHD-related issues. Others shared their experiences as well, for a highly informative and interesting evening. Take-away lessons include: THC (tetrahydrocannabinol) and CBD (cannabidiol) are
- [Understanding your FSHD](https://www.fshdsociety.org/2024/03/11/understanding-your-fshd/) - To be able to take charge, you need to listen to your body by Lonwabo Nene, South Africa "I don’t know, but my right arm feels loose. In fact, my entire right side feels kind of loose. But at the same time – tight.” That was the first time I actually tried to describe the
- [Vita Therapeutics' cell-based therapy update](https://www.fshdsociety.org/2024/03/14/vita-therapeutics-cell-based-therapy-update/) - The company switches up its strategy and plans to develop muscle stem cells that evade the immune system by June Kinoshita, FSHD Society Hot off the press is this news that Vita Therapeutics shared at the Greater Philadelphia chapter meeting on March 2. The Baltimore-based company announced last year that it was developing muscle stem
- [FSHD Representation in Film Fest Favorite 'Good Bad Things'](https://www.fshdsociety.org/2024/03/01/fshd-representation-in-film-fest-favorite/) - Good Bad Things breaks barriers and earns accolades by Erin Saxon, FSHD Society In August, we shared exciting news about Good Bad Things, a film that promised to challenge perceptions about disability. Since then, post-production was completed, and the film has been making waves in the festival circuit. The movie breaks new ground with star
- [Challenging the narrative: new film stars actor with FSHD](https://www.fshdsociety.org/2023/08/01/challenging-the-narrative-new-film-stars-actor-with-fshd/) - Good Bad Things is unlike any film you’ve ever seen by Erin Saxon, FSHD Society Good Bad Things is almost here! Last August, we shared updates on the project, and now, we're thrilled to announce that the film has entered its final stages of post-production. Good Bad Things stars the multitalented Danny Kurtzman (we interviewed
- [Honoring Rare Disease Day: The Power of Collaboration](https://www.fshdsociety.org/2024/02/29/honoring-rare-disease-day/) - Fulcrum and the FSHD Society Reflect on Partnership at Advocacy Event On February 28th, Fulcrum Therapeutics hosted a Rare Disease Day Advocacy Event at their headquarters in Cambridge, MA. This gathering underscored the ongoing partnership between Fulcrum and the FSHD Society, highlighting our collective efforts in the fight against FSHD. The panel discussion included Fulcrum's
- [Every person’s effort takes us closer to the tipping point](https://www.fshdsociety.org/2024/02/26/every-persons-effort-takes-us-closer-to-the-tipping-point/) - Stories from our 2024 Volunteer Leadership Summit In early February, 75 of our Volunteer Leaders from across the US and Canada met in-person at the Chicago Airport Hilton or virtually over Zoom for two days of intensive learning, heartfelt camaraderie, collaboration, and a little bit of fun. The theme unfolded with our keynote speaker, patient
- [Statins (cholesterol-lowering drugs) and muscular dystrophy](https://www.fshdsociety.org/2024/02/23/statins-cholesterol-lowering-drugs-and-muscular-dystrophy/) - Weighing risks and benefits We are often asked about whether people with FSHD can safely take statins. Statins are the most widely prescribed drug in the world and are used to lower blood cholesterol, which is associated with reducing the risk of cardiovascular disease. However, they sometimes affect the muscles, so people with FSHD are
- [From the Wayback Machine, 2010](https://www.fshdsociety.org/2024/02/21/from-the-wayback-machine-2010/) - Who hasn't worried that when they clean out the attic, they'll inadvertently send a precious heirloom to the trash heap? Sometimes a good Samaritan finds the treasure and returns it. That's what happened recently when long-time FSHD Society member Don Burke was updating the Wikipedia page on Facioscapulohumeral muscular dystrophy and trying to locate key
- [The Mattering Effect](https://www.fshdsociety.org/2021/01/03/the-mattering-effect/) - https://www.youtube.com/watch?v=CzajxifTzbI “When one door of happiness closes, another opens. But often we look so long at the closed door that we don't see the one which has been opened for us.” - Helen Keller "Mattering" is a fundamental human need, say psychologists Ora and Isaac Prilleltensky in their recent FSHD Society webinar. They define mattering
- [FSHD Society partnering in €21 Million project](https://www.fshdsociety.org/2024/01/31/fshd-society-partnering-in-e21-million-project/) - Aiming to accelerate disease treatment and care for rare diseases See PaLaDIn Launch Press Release The FSHD Society is embarking on an exciting international collaboration to speed up the development of new treatments and care practices for FSHD and other rare conditions. The Patient Lifestyle and Disease Data Interactium (PaLaDIn), an ambitious Innovative Health Initiative
- [Women's health with Dr. Loralei Thornberg](https://www.fshdsociety.org/2024/01/24/womens-health-with-dr-loralei-thornberg/) - In December, our Women on Wellness Zoom group hosted Loralei Thornberg, MD, an ob/gyn at the University of Rochester. She is a rock star! She addressed issues in women's health and specifically in women with disabilities with authority, empathy, and humor. Her talk covered topics from menstruation to menopause, birth control, pregnancy, childbirth, and sexuality.
- [The FSHD Navigator](https://www.fshdsociety.org/2024/01/08/the-fshd-navigator/) - So you don’t have to journey by yourself by Anna Gilmore, FSHD Society At the FSHD Society, the families we serve always come first. With that in mind, we are proud to introduce our newest program, the FSHD Navigator. The FSHD Navigator is a service dedicated to helping families with FSHD find what they need
- [FSHD advocate in film about Apple Personal Voice](https://www.fshdsociety.org/2024/01/02/fshd-advocate-in-film-about-apple-personal-voice/) - A new short film directed by Academy Award-winning New Zealand filmmaker Taika Waititi features Dr. Tristram Ingham, a physician and disability advocate living with FSHD. The film was made in honor of International Day of Persons with Disabilities, observed on December 3rd since 1992. Watch this moving, fantastical film and read about Dr. Ingham’s experience
- [Shaking Qigong to relax your body](https://www.fshdsociety.org/2023/12/26/shaking-qigong-to-relax-your-body/) - https://www.youtube.com/watch?v=R9efRiergSw Here's something to help you relax after the stress of the holidays. Our December 2023 meeting of the Feeling Fit group featured Qigong instruction by member Trish Kean. You can try these movements and meditations alongside this video. The session is about 45 minutes long and is followed by some questions. Trish has
- [The children of FSHD – they exist, too](https://www.fshdsociety.org/2023/12/28/the-children-of-fshd-they-exist-too/) - One community – united effort – cure for all by Ally Roets, Tucson, Arizona A few years ago, as we started to hear about clinical trials for promising new drugs for FSHD, I was frustrated to learn that my son Sam was too young to participate. When he turns 18 and is old enough, he
- [Engineering new muscles](https://www.fshdsociety.org/2023/12/18/engineering-new-muscles/) - Using nature’s scaffolding to coax cells to develop into muscle by Fred Thys, Weymouth, Massachusetts Neil Camarta, who has FSHD and founded the FSHD Canada Foundation, discovered that there is something called muscle regeneration when he partnered with Lululemon founder Chip Wilson to create Solve FSHD, a venture philanthropic association committed to putting $100 million
- [Clinical care vs. clinical research](https://www.fshdsociety.org/2023/12/18/clinical-care-vs-clinical-research/) - Know the difference by Amanda Hill, FSHD Society In your journey with FSHD, you’ve probably heard about the importance of seeing your doctor regularly. You also most likely have heard about the impact you can make by taking part in clinical research and clinical trials. But sometimes the difference between these two activities isn’t clear.
- [Treatments for FSHD: A broader view](https://www.fshdsociety.org/2023/12/04/treatments-for-fshd-a-broader-view/) - There are already many effective interventions by Nicol Voermans, MD PhD, Radboud University Medical Center We hear that currently there is “no cure for FSHD,” but this does not mean there is no treatment. Treatment and cure are two different things. There are many treatments already for FSHD. Indeed, most of the drugs being developed
- [Kitchen Confidential](https://www.fshdsociety.org/2023/11/30/kitchen-confidential/) - Tips and tricks from our Women on Wellness Zoom group's October meeting on Adaptive Cooking and Adaptive Eating. Notes by Helen Cave and Ranae Beeker, RN. One member has reorganized her kitchen to streamline the process of cooking. Here appliances are now placed with her physical needs in mind. Dishwasher is a drawer, oven is
- [Legacy planning made simpler](https://www.fshdsociety.org/2021/01/07/legacy-planning-made-simpler/) - If you have ever wished that you could do more to help in the fight against FSHD, we invite you to consider joining the FSHD Society Legacy Circle by including the Society in your will or estate plan. To learn more about the numerous ways you can leaving a lasting legacy, please click here. To
- [The FACT Alliance](https://www.fshdsociety.org/2023/11/28/the-fact-alliance/) - Progress through collaboration by Jamshid Arjomand, PhD, Chief Science Officer As a fan of home improvement shows, I’m fascinated by the evolution of going from an idealized dream home or floor plan to the ultimate result. Compromise is always a key factor in decision making, especially when resources and time are limited. Scientific research is
- [2023 International Research Congress summary](https://www.fshdsociety.org/2023/11/27/2023-international-research-congress-summary/) - The journal Neuromuscular Disease has published a summary of the FSHD Society's 2023 scientific conference held in Milan, Italy, this past June. The article was co-authored by Jamshid Arjomand, PhD, chief science officer of the Society; Davide Gabellini, PhD, of Ospedale San Raffaele in Milan, and Nicol Voermans, MD PhD, of Radboud University Medical Center,
- [Step by step. Inch by inch](https://www.fshdsociety.org/2023/11/22/step-by-step-inch-by-inch/) - I have never met most of you, but you are all my village by Brian Jude Loiacono When I reflect back on my life playing all kinds of sports in the mid to late 1960’s, having muscular dystrophy was the farthest thing from my thoughts. The medical community was still evolving in its knowledge of
- [A holistic approach](https://www.fshdsociety.org/2023/11/20/a-holistic-approach/) - What the FSHD Society can and must do for the community by June Kinoshita, FSHD Society The FSHD Society has been tightly focused on understanding FSHD and speeding up the development of treatments. Now that we are in the 12-month home stretch for the first-ever Phase 3 trial of a drug designed to slow the
- [In Memory of William G. Michael](https://www.fshdsociety.org/2023/10/11/in-memory-of-william-g-michael/) - FSHD Society co-founder knew the stakes were high to get things right by Daniel Paul Perez, co-founder FSHD Society William G. “Bill” Michael passed peacefully at the age of 82 on September 11 after a long decline from Alzheimer’s. Bill was the loving husband of the late Virginia T. “Ginny” Michael, devoted father of Elizabeth
- [The 2023 Walk & Roll to Cure FSHD](https://www.fshdsociety.org/2023/11/13/the-2023-walk-roll-to-cure-fshd/) - Breaking the million dollar mark for the first time by Beth Johnston and Erin Saxon, FSHD Society On a sparkling morning this past September, against a majestic view of the Rocky Mountains, nearly 300 people in colorful T-shirts gathered for the FSHD Society’s Colorado Walk & Roll. Standing before them, Paula Lucey squared her shoulders
- [When I finally discovered the benefits of support groups](https://www.fshdsociety.org/2023/11/06/when-i-finally-discovered-the-benefits-of-support-groups/) - Sharing with fellow MD patients is a chance to learn and impart what we know by Robin Stemple. Reprinted with permission from Muscular Dystrophy News Today. I’ll admit that I was a support group cynic in my younger days. My attitude was that I’d figure things out on my own. I just couldn’t see the
- [Holistic approaches to fitness and wellbeing](https://www.fshdsociety.org/2023/10/30/holistic-approaches-to-fitness-and-wellbeing/) - When we invited people in the community to offer "exercise hacks," one of those who stepped forward was Rita Lynn. Following her FSHD diagnosis, she went through a period of progressive weakening and fatigue that made her despair that she would ever have a meaningful life. She found that following a holistic approach to fitness
- [An ounce of prevention...](https://www.fshdsociety.org/2023/09/26/an-ounce-of-prevention/) - September is Fall Prevention Awareness Month and was the subject of our Wellness Hour. Falls are the second most common cause of injury leading to death. For a person with FSHD, falling and breaking a bone may be the incident that leads to becoming reliant on a wheelchair. That's because it's much harder for FSHD
- [Avidity Announces New Positive AOC 1001 Data](https://www.fshdsociety.org/2023/10/10/avidity-announces-new-positive-aoc-1001-data/) - Avidity Biosciences, Inc. (Nasdaq: RNA), has announced new positive AOC 1001 data demonstrating improvement in multiple functional endpoints and favorable long-term safety and tolerability in people living with myotonic dystrophy type 1 (DM1). Avidity is a biopharmaceutical company committed to delivering a new class of RNA therapeutics called Antibody Oligonucleotide Conjugates (AOCs™). Preliminary data presented
- [The FSHD Society Celebrates Fulcrum's Milestone in the Fight Against FSHD](https://www.fshdsociety.org/2023/09/08/the-fshd-society-celebrates-fulcrums-milestone-in-the-fight-against-fshd/) - Fulcrum Therapeutics has announced successful completion of patient enrollment in REACH Phase 3 trial The FSHD Society is thrilled to announce a significant milestone in the battle against FSHD. Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a pioneering biopharmaceutical company focused on rare diseases, confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial
- [FSHD Lab Day was empowering for all](https://www.fshdsociety.org/2023/08/28/fshd-lab-day-was-empowering-for-all/) - Uniting the FSHD Community in Advancing Research by Nizar Saad, PhD, Columbus, Ohio On July 8th, our lab at Nationwide Children’s Hospital (NCH) in Columbus, Ohio, in collaboration with NCH, the FSHD Society, and the Society’s Columbus chapter led by Susan Aumiller, orchestrated a highly successful “FSHD Lab Day.” During this event, members of the
- [Eye Care Tips and Tricks for FSHD](https://www.fshdsociety.org/2023/08/23/eye-care-tips-and-tricks-for-fshd/) - by Helen Cave and the Women on Wellness group Dry eyes, also known as Ocular Surface Disease (OSD), is a common issue with many in the FSHD community. Symptoms are often described as grittiness, itchiness, or burning especially upon waking up in the morning and/or later in the day. Some people say it feels as
- [Making strides toward stem cell therapies](https://www.fshdsociety.org/2023/08/22/making-strides-toward-stem-cell-therapies/) - University of Minnesota lab reports promising results in mouse FSHD studies by Fred Thys, Weymouth, Massachusetts Work by a team led by Dr. Rita Perlingeiro at the University of Minnesota suggests that FSHD patients could benefit from pluripotent stem cell therapy. “Pluripotent stem cells have the capacity to generate all the different cell types of
- [Passion and hope at the IRC](https://www.fshdsociety.org/2023/06/30/passion-and-hope-at-the-irc/) - The immeasurable value of face to face meetings by Raj Badiani, FSHD UK I was given the opportunity to attend the FSHD Society's International Research Congress (IRC) in Milan this year and present the FSHD UK poster to share who we are, what we have done and our plans at this year's IRC 2023. Since
- [Falling backwards and what to do about it](https://www.fshdsociety.org/2023/07/31/falling-backwards-and-what-to-do-about-it/) - From the Women on Wellness group At our May meeting, one member shared a great question: Has anyone had experience with falling backwards due to their lordosis? She didn’t feel any warning signals, and just fell back. This was something many in the group have experienced, and the members came up with a variety of
- [Arrowhead files for regulatory clearance to start a Phase 1/2 study in FSHD](https://www.fshdsociety.org/2023/07/24/arrowhead-files-for-regulatory-clearance-to-start-a-phase-1-2-study-in-fshd/) - From Arrowhead Pharmaceuticals PASADENA, Calif.--(BUSINESS WIRE)--Jul. 17, 2023-- Arrowhead Pharmaceuticals, Inc. (NASDAQ: ARWR) today announced that it has filed an application for clearance to initiate a Phase 1/2 clinical trial of ARO-DUX4, the company’s investigational RNA interference (RNAi) therapeutic being developed as a potential treatment for patients with facioscapulohumeral muscular dystrophy (FSHD). ARO-DUX4 is the
- [True Cost of FSHD survey](https://www.fshdsociety.org/2023/07/24/true-cost-of-fshd-survey/) - Preliminary findings from our survey to understand the economic impact of FSHD by June Kinoshita, FSHD Society As a growing number of drugs enter clinical trials for FSHD, a question we hear is, How much will these treatments cost? Unfortunately, we don’t have a crystal ball. At best, we can say that the price will
- [Walkers and Wheelchairs 101](https://www.fshdsociety.org/2023/06/30/walkers-and-wheelchairs-101/) - Not every person with FSHD will need a mobility device, but many will at some point. The many designs and brands on the market can be daunting.
- [Advocacy and industry partners launch new global coalition to speed delivery of new therapies for FSHD](https://www.fshdsociety.org/2023/06/20/advocacy-and-industry-partners-launch-new-global-coalition-to-speed-delivery-of-new-therapies-for-fshd/) - Project Mercury unites patients, industry, research and clinical communities in groundbreaking initiative from Fulcrum Therapeutics Today on World FSHD Day, the FSHD Society and Fulcrum Therapeutics announce the launch of Project Mercury, a first-of-its-kind collaboration of global stakeholders committed to identifying and addressing the challenges that could impede the delivery of new medicines for this
- [Adventures with a robotic leg brace](https://www.fshdsociety.org/2023/06/14/adventures-with-a-robotic-leg-brace/) - Stumble control technology reduces falls by 80 percent by Kathy Senecal, New England chapter co-leader It can be difficult to find the right adaptive equipment we need to help us navigate the progression of FSHD. My search to stay mobile for as long as possible has led me to the C-Brace. The Ottobock C-Brace is
- [Kate Therapeutics is pursuing FSHD treatment](https://www.fshdsociety.org/2023/06/13/kate-therapeutics-is-pursuing-fshd-treatment/) - The company's MyoAAV promises a less toxic way to deliver gene therapies by June Kinoshita, Senior Director of Research and Education Kate Therapeutics, Inc. (KateTx), a San Diego-based biopharma company, announced on June 8 that it has "emerged from stealth mode with a $51 million Series A financing" to fuel its program to develop novel
- [World FSHD Day backstory](https://www.fshdsociety.org/2018/06/07/world-fshd-day-backstory/) - Italian brothers’ ordeal sparks a global movement As we approach our third annual World FSHD Day this June 20th, and the international FSHD community plans to flood their social channels with messages and images to bring attention to the day, we’d like to share the backstory of how June 20 came to be World FSHD
- [Unleashing the Power of Collaboration: Achieving More for FSHD Together](https://www.fshdsociety.org/2023/05/25/unleashing-the-power-of-collaboration/) - by Ken Kahtava, FSHD Society This blog post was originally published here on the Project Mercury website. On 11 May in Leiden, NL, the Project Mercury global task force members met for the first time to chart the path forward for achieving the program’s aims. In a world that thrives on individuality and competition, it’s easy to overlook
- [Managing Fatigue](https://www.fshdsociety.org/2023/05/22/managing-fatigue/) - Our May Women on Wellness group discussion focused on a topic that is always a big concern, fatigue. This is a group of women who meet monthly on Zoom and share a common bond of having FSHD. "We speak openly with each other, however we maintain confidentiality of who shares what, as this is a
- [Raising our voice to raise our seats!](https://www.fshdsociety.org/2023/05/18/raising-our-voice-to-raise-our-seats/) - Medicare will now cover elevating power wheelchair seats by Ranae Beeker, RN Margaret Mead opined: "Never doubt that a small group of thoughtful, committed individuals can change the world. In fact, it's the only thing that ever has." A great example of the truth of this statement took place over the last several months, right within our
- [An Unforgettable Experience at Leicester City's Disability Matters Matchday](https://www.fshdsociety.org/2023/05/05/leicester-city-disability-matters-matchday/) - The city’s famed football club engages, inspires, and empowers this FSHD family Last month, father and daughter Michael and Alexa Penwell had an incredible experience in Leicester City, England. They flew all the way from North Carolina to watch a Premier League football (soccer) match between Leicester City and the Wolverhampton Wanderers, but they had
- [New frontiers in muscle regeneration for FSHD](https://www.fshdsociety.org/2023/04/27/new-frontiers-in-muscle-regeneration-for-fshd/) - Once seen as a long shot, now more companies are looking at strategies to regrow muscles by Jamshid Arjomand, PhD, Chief Science Officer Over the past few years, there has been an increase in the number of pharmaceutical companies developing FSHD therapeutics. These strategies primarily focus on blocking DUX4, the toxic element that causes FSHD.
- [Bowel and urinary issues in FSHD](https://www.fshdsociety.org/2022/11/30/bowel-and-urinary-issues-in-fshd/) - https://www.youtube.com/watch?v=27EPTCkUcek We know that patients are the experts when it comes to understanding the impacts of FSHD on their health and well-being. That's why when we saw many discussions on social media about gastrointestinal and urinary health issues, we initiated a study in collaboration with researchers at the University of Iowa to find out if
- [What to do in a crisis](https://www.fshdsociety.org/2023/04/11/what-to-do-in-a-crisis/) - Mental health crises are prevalent in our community. Help is out there A diagnosis of FSHD poses life-long challenges. Individuals live with an undercurrent of anxiety about how their symptoms might progress in the future, with periods of stability punctuated by unpredictable and significant loss of strength and changes in abilities to do daily tasks.
- [Feeling Fit: Exercising your hands and arms](https://www.fshdsociety.org/2023/03/28/feeling-fit-exercising-your-hands-and-arms/) - https://www.youtube.com/watch?v=vw1TV2umxVA Textbook descriptions of FSH muscular dystrophy focus on weakness in biceps and shoulder blades, but many individuals also experience weakness that affects their hands, wrists, and forearms. In our March Feeling Fit with FSHD Zoom sessions, Frank Hanley takes you through exercises to keep your hands and arms limber and strong. Below is the
- [The challenges of the new era](https://www.fshdsociety.org/2023/03/23/the-challenges-of-the-new-era/) - What can you do to help? When we say that we are embarking on a new era in clinical trials, what do we mean? After all, we have seen previous FSHD trials, including those by Wyeth, aTyr, Acceleron, and Fulcrum’s ReDUX4. What makes the current era different is that, for the first time, we have
- [About early-onset FSHD](https://www.fshdsociety.org/2023/03/21/on-early-onset-fshd-video/) - https://www.youtube.com/watch?v=xjM37UT5UxY Our webinar with Dr. Tina Duong remains timely and important for families with FSHD. In it, she focuses on individuals with early-onset FSHD, meaning those who develop symptoms in their first decade of life. With early-onset FSHD, she says, research has found that "the disease is more severe, there may be faster progression, and
- [DIY holiday cards](https://www.fshdsociety.org/2020/12/09/diy-holiday-cards/) - Many of you have asked if the FSHD Society could provide holiday cards you can send to family and friends, asking for donations. We heard you and have come up with this collection of e-cards by artists with FSH muscular dystrophy. Here's how to use them: Click on the card you want to use. Control
- [How postural changes lead to pain](https://www.fshdsociety.org/2023/03/01/how-postural-changes-lead-to-pain/) - "I’m focused on getting posture right and core as active as possible." - Ulrike Uta https://www.youtube.com/watch?v=RMuOugwVYto At this month's Feeling Fit with FSHD sessions, physiotherapist Ulrike Uta, MSc, MCSP, of the Muscular Dystrophy Support Centre in Coventry, UK, explains how muscle weakness from FSHD can cause people to compensate by overworking other muscles. For example,
- [European FSHD patients speak out](https://www.fshdsociety.org/2023/02/28/european-fshd-patients-speak-out/) - To coincide with World Rare Disease Day FSHD Patients across Europe say what they want from clinical trials Announcement by FSHD Europe FSHD Europe is pleased to publish the Lay Report of the European Patient Survey where 1147 FSHD patients across Europe responded to say what they see as most important for any treatment to
- [Find your rope team](https://www.fshdsociety.org/2023/02/27/find-your-rope-team/) - When the going gets tough, your team will hold you up by Leigh Reynolds, FSHD Society Army Command Sgt. Maj. Gretchen Evans earned the highest rank an enlisted soldier can achieve. She was responsible for all security and personnel in Afghanistan, overseeing more than 30,000 ground troops, until enemy fire left her with a brain
- [Vita Therapeutics seeks volunteers](https://www.fshdsociety.org/2023/02/23/vita-therapeutics-seeks-volunteers/) - Participate in a research study on a muscle regenerating treatment for FSHD Vita Therapeutics is a cell engineering company harnessing the power of genetics to develop cellular medicines in the areas of neuromuscular diseases. The company utilizes induced pluripotent stem cell (iPSC) technology to engineer specific cell types designed to replace those that are defective
- [Avidity gets orphan drug designation](https://www.fshdsociety.org/2023/02/16/avidity-gets-orphan-drug-designation/) - Avidity Biosciences announced this week that it had received FDA Orphan Drug Designation for its experimental FSHD treatment, called AOC 1020. This does NOT mean the drug is now available for patients to take. But it's great news, nonetheless. The FDA's Office of Orphan Drug Products grants orphan status to support the development of medicines
- [Feeling Fit with Lonwabo Nene](https://www.fshdsociety.org/2023/02/06/feeling-fit-with-lonwabo-nene/) - Disclaimer: Information provided by the FSHD Society does not imply an endorsement of any of the drugs, procedures, treatments, or products discussed. Please consult your own healthcare provider about any medical interventions. When we say people with FSHD are the experts in living with their condition, we have in mind people like Lonwabo Nene, an
- [(Cautious) optimism in FSHD drug development](https://www.fshdsociety.org/2023/01/16/cautious-optimism-in-fshd-drug-development/) - Patients are critical in helping to transform optimism into reality by Ken Kahtava, Chief Business Officer, FSHD Society Breakthroughs in FSHD research have identified the primary mechanism that causes FSHD. It is when a normally silenced gene, DUX4, gets “turned on.” When this happens, the gene causes toxic health issues in the body. The discovery
- [Promising findings from Avidity's myotonic dystrophy trial](https://www.fshdsociety.org/2022/12/14/promising-findings-from-aviditys-myotonic-dystrophy-trial/) - A major breakthrough for the field of RNA therapeutics Avidity Biosciences announced today that its investigational treatment for myotonic dystrophy type 1 (DM1), called AOC 1001, can be delivered into the muscle of human patients to target the gene responsible for the disease. DM1 is a genetic, muscle-damaging disease that affects children and adults. Like
- [Stay warm and safe](https://www.fshdsociety.org/2023/01/04/stay-warm-and-safe/) - Our monthly Wellness Hour invited Dr. Mark Tarnopolsky of McMaster University to discuss an issue that many with FSHD face in winter: feeling especially susceptible to cold temperatures. He explains the role of muscles in generating heat. Larger muscles generate more heat. His laboratory compared people who exercise three times per week or more with
- [Teaching future doctors about FSHD](https://www.fshdsociety.org/2022/12/19/teaching-future-doctors-about-fshd/) - If we want to control the narrative, we need to tell our stories by Brian Jude Loiacono I was formally diagnosed with FSHD in January 2019. At that time I knew I was in trouble, because I began falling when I was walking. Being a retired compliance auditor it was inherent for me to dig
- [Springboards to the future](https://www.fshdsociety.org/2022/12/11/springboards-to-the-future/) - Everything we do propels us faster toward treatments and a cure We often speak of “filling potholes” and “overcoming obstacles” toward treatments and cures, but what the FSHD Society has done is much more dynamic. We are not just bridging gaps but are building springboards that actually propel us faster down the road to treatments.
- [Feeling Fit: Exercises for the neck and shoulders](https://www.fshdsociety.org/2022/12/08/feeling-fit-exercises-for-the-neck-and-shoulders/) - https://www.youtube.com/watch?v=H4PZ4loy0kg Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. If anything hurts, stop! In the November “Feeling Fit” sessions, Frank Hanley introduces a variety of neck and shoulder exercises and reviews the qigong breathing techniques and abdominal (core) exercises that
- [Folding Lightweight Travel Power Wheelchairs](https://www.fshdsociety.org/2021/02/22/folding-lightweight-travel-power-wheelchairs/) - RWhich one is right for me? by Amy Bekier, San Diego chapter director No one chooses to use a wheelchair, and many who are still mobile opt for a scooter hoping it's not the end of their walking life-and to avoid the perceived stigma of using a chair. Once you have crossed the threshold to
- [Using our leverage](https://www.fshdsociety.org/2022/12/05/using-our-leverage/) - A few years ago, we told our donors that a gift to the FSHD Society “is one of the most powerful investments you will ever make to advance medical research.” It might have sounded like hubris, but we meant it. And today, we see that our bold claim is truly justified. By the middle of
- [Activating the global community  ](https://www.fshdsociety.org/2022/11/28/activating-the-global-community/) - Together we are stronger than FSHD The FSHD Society’s mission is to advocate for every patient to live fully while doing all we can to accelerate the development of treatments and a cure. To succeed, we must connect with a wide community of people everywhere, because FSHD knows no borders and there is great strength
- [GivingTuesday Radiothon is December 1](https://www.fshdsociety.org/2020/11/24/radiothon2020/) - #GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls onDecember 1, and we are marking the day by holding our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback
- [CEO's 2020 second quarter report](https://www.fshdsociety.org/2020/05/28/ceos-2020-second-quarter-report/) - Mark Stone, the FSHD Society's president and CEO, reported on the Society's activities at his second quarter report to stakeholders on May 20, 2020. The webinar recording is now available (click below). He highlighted how the FSHD Society's research initiatives, International Research Congress, FSHD Connect conference, Voice of the Patient Forum, community support, and fundraising
- [$3.4 million to speed us on our journey (Part 2)](https://www.fshdsociety.org/2022/11/17/3-4-million-to-speed-us-on-our-journey-part-2/) - Building tools to accelerate drug development and clinical trials In the pioneering days of the Society, all our research funding went to basic research aimed at discovering the genetic cause of FSHD and advancing understanding of the disease itself. We have moved into a new era with many ideas for therapies (which would not have
- [$3.4 million to speed us on our journey (Part 3)](https://www.fshdsociety.org/2022/11/21/3-4-million-to-speed-us-on-our-journey-part-3/) - The foundations on which drug development happens “Infrastructure is basic physical and organizational structures…needed for the operation of a society or enterprise.” —Oxford Dictionary In a rare condition like FSHD, it’s unlikely for any one research center to be able to enroll enough patients for clinical studies or drug trials. Also, when patients and disease experts
- [$3.4 million to speed us along our journey (Part 1)](https://www.fshdsociety.org/2022/11/13/3-4-million-to-speed-us-along-our-journey-part-1/) - How projects we have funded will help us get more and better treatments to our community by June Kinoshita, FSHD Society Many of you have heard us describe the FSHD Society as a “research-focused patient advocacy organization.” While the public may see more of our patient advocacy face, research is equally central to our identity.
- [Collaborating to collect clinical trial data](https://www.fshdsociety.org/2022/05/23/collaborating-to-collect-clinical-trial-data/) - FSHD Society and Critical Path Institute will aggregate data in C-Path’s Rare Diseases Cures Accelerator-Data and Analytics Platform The FSHD Society announced that it has partnered with Critical Path Institute (C-Path) to facilitate the integration of clinical trial data from the control arm of various FSHD-related clinical studies into C-Path’s Rare Disease Cures Accelerator-Data and
- [Losmapimod continues to show promise](https://www.fshdsociety.org/2022/10/31/losmapimod-continues-to-show-promise/) - Steady improvement seen in data from open-label extension study Losmapimod, a drug that is currently in a Phase 3 clinical trial for FSH muscular dystrophy, continues to slow or stop the progression of disease in patients who have been taking the drug for up to 96 weeks, according to Fulcrum Therapeutics, the Cambridge, Massachusetts-based company
- [Corinne Bronfman,  October 28, 1947 – October 7, 2022](https://www.fshdsociety.org/2022/10/16/corinne-bronfman-october-28-1947-october-7-2022/) - She leaves a legacy of remarkable progress toward treatments for FSHD The FSHD Society was deeply saddened to learn of the passing of Corinne Bronfman on October7, in Washington DC. Corinne, her mother Marjorie Bronfman, and uncle Edward Schechter had a profound impact on the work of the FSHD Society. “The FSHD Society would not
- [Roche announces Phase 2 trial in FSHD](https://www.fshdsociety.org/2022/10/07/roche-announces-phase-2-trial-in-fshd/) - The drug, GYM329, aims to boost muscle growth Roche, the Swiss pharmaceutical giant, has announced that it is launching an international Phase 2 clinical trial for facioscapulohumeral muscular dystrophy (FSHD). The trial, which is called MANOEUVRE, will take place in Denmark, Italy, the UK, and US, and is planned to begin enrolling patients by the
- [SOLVE FSHD Invests US $1 Million in miRecule](https://www.fshdsociety.org/2022/10/03/solve-fshd-invests-us-1-million-in-mirecule/) - Funds aim to accelerate development of best-in-class antibody-RNA conjugate to treat facioscapulohumeral muscular dystrophy GAITHERSBURG, Maryland and VANCOUVER, British Columbia - September 29, 2022 (View original source.) - miRecule, Inc., an innovator of next-generation RNA therapeutics, and SOLVE FSHD, a venture-philanthropy organization catalyzing the pace of innovation to accelerate a cure for facioscapulohumeral muscular dystrophy
- [Sanofi and miRecule to partner on FSHD drug program](https://www.fshdsociety.org/2022/10/04/sanofi-and-mirecule-to-partner-on-fshd-drug-program/) - Bringing two technologies together for a best-in-class therapy miRecule, Inc., a biotech based in Gaithersburg, Maryland, today announced a strategic collaboration and exclusive license agreement with pharmaceutical giant Sanofi to develop and commercialize a novel treatment for FSHD. Sanofi is a multinational corporation valued at $36 billion, making it the ninth largest pharmaceutical company in
- [Avidity receives IND clearance for FSHD therapeutic](https://www.fshdsociety.org/2022/09/27/avidity-receives-ind-clearance-for-fshd-therapeutic/) - AOC1020 will be the first RNA therapy to be tried in FSHD Avidity Biosciences announced today that it had received investigational new drug (IND) clearance from the U.S. Food and Drug Administration (FDA) for AOC 1020, its experimental therapy for facioscapulohumeral muscular dystrophy. This means the San Diego-based biopharmaceutical company is allowed to begin testing
- [Abdominal and breathing exercises for FSHD](https://www.fshdsociety.org/2022/09/14/abdominal-and-breathing-exercises-for-fshd/) - https://www.youtube.com/watch?v=nJ_0V9O9jOg Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. We're excited to launch Feeling Fit with FSHD, our new Gathering Place Zoom group. So many of the questions we get from the FSHD community are about exercise and physical therapy,
- [International research round-up](https://www.fshdsociety.org/2022/09/19/international-research-round-up/) - Report from the FSHD Society's 29th annual International Research Congress by Alexandra Belayew, PhD, Mons, Belgium This year’s congress (June 16-17) opened with a keynote presentation by Lexi Pappas, who gave a very moving testimony of what it can be like to live with FSHD. She noted that the image of FSHD as a slowly
- [A sense of belonging](https://www.fshdsociety.org/2022/09/06/a-sense-of-belonging/) - by Raj Badiani, FSHD UK This year's FSHD Connect was the first one that I'd ever attended, and for me this started late on the Friday evening. Sadly, I had missed the welcome drinks reception, but fortuitously I met with three American ladies, and like me, for two of them this was their first time.
- [New movie will feature man with FSHD](https://www.fshdsociety.org/2022/08/25/new-movie-will-feature-man-with-fshd/) - Actors Max Adler and Danny Kurtzman team up for Good Bad Things Long-time FSHD Society champion, actor Max Adler, shared some exciting news with us that he has joined the cast of a new film now being shot that centers on a character who has FSH muscular dystrophy. What's more, the film was written by
- [True Cost of FSHD](https://www.fshdsociety.org/2022/08/22/true-cost-of-fshd/) - Part of our battle plan to ensure patients will have access to treatments by June Kinoshita, FSHD Society The FSHD Society is undertaking a major study of the full socioeconomic burden of FSHD. This is one of the most important and urgent studies we have ever done, and is the first of its kind in
- [Putting breathing issues on the front burner](https://www.fshdsociety.org/2022/08/15/putting-breathing-issues-on-the-front-burner/) - Dan Perez’s fierce advocacy will advance knowledge and extend the lives of people with FSHD Breathing complications in FSHD can be deadly, but with the lion's share of research focused on skeletal muscle weakness, breathing disorders remain understudied. That’s why it’s big news that the National Institutes of Health (NIH) recently announced a “Notice of
- [Team Up to End FSHD through the Walk & Roll](https://www.fshdsociety.org/2022/07/31/team-up-to-end-fshd-through-the-walk-roll/) - Together, we move toward a cure Ending FSHD will take all of us and the Walk & Roll to Cure FSHD makes it easy for everyone to team up - friends, loved ones, and co-workers - to change the world for all those affected. "Efforts like the Walk & Roll put fuel in the tank.
- [My Superpower - Why I volunteer for clinical trials](https://www.fshdsociety.org/2022/07/19/my-superpower-why-i-volunteer-for-clinical-trials/) - My FSHD means I can be someone who changes the course of this disease for generations to come by Colette Wheeler, Los Angeles https://www.youtube.com/watch?v=SviM99uIRzs This is an edited transcript of a talk Colette gave at the Los Angeles FSHD 360 in 2021 (see video above). Recent news leads you to believe there’s such incredible science
- [Changing mindset about assistive technologies](https://www.fshdsociety.org/2022/07/14/changing-mindset-about-assistive-technologies/) - https://youtu.be/nACQSmu0ek0 Emma Weatherley, executive director of Australia's FSHD Global Research Foundation, has a refreshingly positive outlook on assistive devices. Instead of seeing the need to use a brace or wheelchair as a sign of defeat, she views devices as enabling technologies that enable people with FSHD to live their best life. In this talk to
- [A long journey but worth it](https://www.fshdsociety.org/2022/07/07/a-long-journey-but-worth-it/) - Face-to-face meetings add an extra layer of feelings and motivation by Ricardo Gerpe, FSHD Spain I had decided to go to Orlando for the FSHD Connect conference although due to my work responsibilities, I could only attend the Sunday session. It was a 20-hour journey from my home in Spain and by the time I
- [First patient enrolls in Fulcrum’s Phase 3 clinical trial](https://www.fshdsociety.org/2022/07/05/first-patient-enrolls-in-fulcrums-phase-3-clinical-trial/) - Losmapimod has the potential to be the first drug to treat FSHD The much-anticipated Phase 3 clinical trial of losmapimod has formally begun with the dosing of the first volunteer, Fulcrum Therapeutics announced today. The Cambridge, Massachusetts-based company designed the trial to show whether this drug is safe and effective in slowing the progression of
- [Design to thrive](https://www.fshdsociety.org/2022/06/21/design-to-thrive/) - https://www.youtube.com/watch?v=noGX27Vz2eQ Jane Nemke shares how she applied universal design principles to renovate her condominium so that it was easier for her to live in as her FSHD symptoms progressed. Her goal was not merely to improve accessibility but to create a living environment where she feels she will thrive. Previously on this blog, Jane shared
- [We are convening the world this month in Orlando, Florida](https://www.fshdsociety.org/2022/06/08/we-are-convening-the-world-this-month-in-orlando-florida/) - Global stakeholders are meeting at FSHD Society conferences The FSHD Society is holding back-to-back meetings this month in Orlando, Florida, to convene patients, families, researchers, clinicians, advocacy leaders, industry scientists, and regulators from around the world to focus on the goal of developing treatments for facioscapulohumeral muscular dystrophy (FSHD). FSHD is a rare, hereditary muscle-weakening
- [June 20 is World FSHD Day 2022](https://www.fshdsociety.org/2022/06/07/june-20-is-world-fshd-day-2022/) - A global celebration to raise awareness of FSH muscular dystrophy Are you tired of getting blank stares when you explain that you or a loved one have facioscapulohumeral muscular dystrophy? How many times have you heard people say they also know someone with MS...? If each of us could educate just one more person about
- [Let's start a movement!](https://www.fshdsociety.org/2022/03/01/lets-start-a-movement-for-accessibility/) - How I got my local hospital to make accommodations for me by Diane Pappas, Gloucester, Massachusetts You don’t realize there is a problem with something until you experience it yourself. Recently, my husband and I stayed at a hotel in Boston and I made a note on the reservation that I needed a walk-in shower
- [About ankle-foot orthoses (AFOs)](https://www.fshdsociety.org/2022/05/30/about-ankle-foot-orthoses-afos/) - https://www.youtube.com/watch?v=5cA1yltRz88 Did you know we have an active group of international FSHD advocacy leaders, the World FSHD Alliance? We meet every three months to discuss global strategies. The members bring impressive skills and backgrounds to this task and often share information that we think is valuable to all. In this example, Ricardo from FSHD
- [On a Mission to Cure FSHD](https://www.fshdsociety.org/2022/05/17/on-a-mission-to-cure-fshd/) - Great.com interviews FSHD Socıety about Curing FSHD While Empowering Affected Families Danielle Riberio from Great.com interviewed Mark Stone, CEO of FSHD Society, as part of their 'Great.com Talks With...' podcast. This series is meant to serve as an antidote to the preponderance of negative news stories and aims to shed light on organizations and experts
- [A delicate matter for female travelers with FSHD](https://www.fshdsociety.org/2022/05/16/a-delicate-matter-for-female-travelers-with-fshd/) - Tips and tricks for managing urinary incontinence Editor's note: This is a summary of the May Women on Wellness Zoom meeting. The members met to discuss their concerns and solutions around toileting while traveling. Note, many of these solutions are applicable for men. Thank you to Ranae Beeker, RN, and the WOW members for this
- [Pain management in FSHD](https://www.fshdsociety.org/2022/05/12/pain-management-in-fshd/) - The science and psychology of managing chronic pain https://www.youtube.com/watch?v=qv5awpvb0V8 Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to manage. In various studies, between 82 and 89 percent of people with FSHD reported having significant pain, with 19 percent rating their pain level
- [Applying AI to FSHD research](https://www.fshdsociety.org/2022/04/21/applying-ai-to-fshd-research/) - Using Artificial Intelligence to Analyze FSHD Data The FSHD Society announced that it is launching a collaboration involving the FSHD Clinical Trial Research Network (CTRN) and BullFrogAI, an innovator in artificial intelligence, to analyze the largest-yet natural history dataset collected from patients with facioscapulohumeral muscular dystrophy (FSHD). FSHD is a debilitating, genetic disease affecting an
- [FSHD SOCIETY ACHIEVES ACCREDITATION FROM BBB WISE GIVING ALLIANCE](https://www.fshdsociety.org/2022/04/25/fshd-society-achieves-accreditation-from-bbb-wise-giving-alliance/) - Highlighting Excellence in Leadership, Finances and Mission-Driven Work Randolf, MA – April 25, 2022 – By meeting key standards of board oversight, finances, results reporting and fundraising appeals, the FSHD Society achieved accreditation by the BBB Wise Giving Alliance. This accreditation signifies that the FSHD Society is deserving of donor trust as they are a
- [What is SOLVE FSHD?](https://www.fshdsociety.org/2022/04/18/what-is-solve-fshd/) - https://www.youtube.com/watch?v=d1AN0Nj31sc The recent news that Lululemon founder Chip Wilson is committing $100 million USD to targeted FSHD research over the next six years has been called ‘game-changing’,generating tremendous excitement and hope in our community. Along with the excitement, patients have many questions about the role of Wilson’s mission-driven organization, SOLVE FSHD. In our recent webinar
- [ACT to improve quality of life](https://www.fshdsociety.org/2022/04/11/act-to-improve-quality-of-life/) - by Kent Drescher, PhD, Bay Area Chapter Co-Director I've had FSHD symptoms for over 50 years. It seems like I've spent much of that time waiting. Waiting for treatment. Waiting to see what precious physical ability I will lose next. Waiting for a cure. Along with physical symptoms of FSHD (e.g. weakness, pain, fatigue) there
- [MOVE needs you!](https://www.fshdsociety.org/2022/03/29/move-needs-you/) - To the FSHD community, we're sharing this invitation from Drs. Statland and Tawil to join the MOVE study. It is open to individuals with FSHD of all ages residing in the U.S. This is the largest-ever natural history study of FSHD, with data collected during your annual visit to the doctor. We can't stress enough
- [What we started…](https://www.fshdsociety.org/2022/03/22/what-we-started-in-fsh-muscular-dystrophy/) - by June Kinoshita, FSHD Society Over the next 12 to 24 months, four clinical trials for FSH muscular dystrophy are expected to launch. All of these upcoming trials all target the root cause of FSHD, the toxic DUX4 gene. For the first time, we have a chance at slowing disease progression, or even stopping FSHD
- [Life hacks: Braces for shoulder stabilization](https://www.fshdsociety.org/2022/03/28/braces-for-shoulder-stabilization-in-fshd/) - by Peter Blackburn, South Africa FSHD group I have two of the Ottobock 5055 Acro Comfort braces. These are joined at the back with velcro tape (my personal touch to have them act as a unit and not two separate braces) and these I use for rehabilitation purposes. They create a good amount of stability
- [Overcoming separateness](https://www.fshdsociety.org/2022/03/14/overcoming-separateness/) - by Haviva Ner-David, Kibbutz Hannaton, Israel WHEN I WAS diagnosed, aside from recommending swimming, the doctor told me and my mother there was an organization I could join called the FSHD Society. They raise money to fund research into the disease, have support networks and regular informational and social conferences. He thought it might be
- [Fulcrum’s Phase 3 trial news – what does it mean for patients?](https://www.fshdsociety.org/2022/03/07/fulcrums-phase-3-trial-news-what-does-it-mean-for-patients/) - by June Kinoshita, Director of Research and Patient Engagement Fulcrum’s announcement that it will proceed with a Phase 3 clinical trial of losmapimod is big news for the FSHD community. It means that the FDA has considered the data from the Phase 2b trial (ReDUX4) and provided guidance on the design of the Phase 3
- [Fulcrum announces Phase 3 trial of losmapimod](https://www.fshdsociety.org/2022/03/03/fulcrum-announces-phase-3-trial-of-losmapimod/) - From Fulcrum Therapeutics' press release Reachable Workspace (RWS) primary endpoint based on discussions with FDA and EU regulatory agencies Trial expected to begin in 2Q 2022 Potential first-to-market therapy for FSHD Fulcrum to host virtual Key Opinion Leader webcast on FSHD on March 24 at 10:00am ET CAMBRIDGE, Mass., March 03, 2022 (GLOBE NEWSWIRE) -- Fulcrum
- [Women on Wellness - Activities of daily living](https://www.fshdsociety.org/2022/02/23/women-on-wellness-activities-of-daily-living/) - by Ranae Beeker, RN The Women on Wellness (WOW) group, a group of women who personally share the challenges of FSHD meets on the first Wednesday of the month (2P PT, 3P MT, 4 CT 5 ET via Zoom). We are a fairly new group and it is exciting to see the great, growing engagement
- [Listening to my dreams](https://www.fshdsociety.org/2022/02/16/listening-to-my-dreams/) - by Haviva Ner-David Part III of excerpts from Rabbi Ner-David's book, Dreaming Against the Current I AM A tour guide for a large synagogue group visiting Israel, getting on and off buses. I leave my shoes somewhere and can’t find them. I keep looking—under all the seats in the bus, on the seats, but I
- [Tell your doctor about the FSHD Masterclass](https://www.fshdsociety.org/2021/05/28/tell-your-doctor-about-the-fshd-masterclass/) - UPDATE - We are now offering this CME-accredited course as an on-demand online offering. Click here for the course information. The FSHD Society is offering its first-ever CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD). This course, which will be held virtually on August 12, is of interest to any physician and allied health professional who
- [Re-igniting my passion](https://www.fshdsociety.org/2022/02/08/re-igniting-my-passion/) - by Allison Calder, Salt Lake City, Utah This year, the Volunteer Leadership Summit came at just the right time for me. I had hit a slump as a chapter leader, a role I had taken on back in 2019. Like most of the world, I was defeated by the idea of trying to plan in-person
- [Shoulder dyskinesia in FSHD](https://www.fshdsociety.org/2022/02/16/shoulder-dyskinesia-in-fshd/) - https://www.youtube.com/watch?v=yCI_9m2LRfc Our FSHD University webinar on January 27, 2022, was a revelation! We learned that the muscle weakness that causes scapular winging can lead to maladaptive, compensatory movements which themselves can result in further loss of function and severe pain from overused muscles and entrapped nerves. Our speaker, Jos IJspeert, shared videos of FSHD patients performing
- [FSHD Canada Foundation awards $2.8 million to CTRN](https://www.fshdsociety.org/2022/01/18/fshd-canada-foundation-awards-2-8-million-to-ctrn/) - by June Kinoshita, FSHD Society The FSHD Canada Foundation, a close partner and fellow traveler of the FSHD Society since its founders Neil Camarta and Craig Kelley first met in 2010 at the Society’s annual conference, announced it has awarded a $2.8 million grant to the Clinical Trial Research Network (CTRN). The grant includes support
- [Teen with FSHD is in top 40 of Science Talent Search](https://www.fshdsociety.org/2022/01/27/teen-with-fshd-is-in-top-40-of-science-talent-search/) - Our very own Heloise Hoffmann, leader of the Southwest Florida chapter and Walk & Roll, is a science rock star! The Society for Science named her a top 40 finalist in the Regeneron Science Talent Search, the nation’s oldest and most prestigious science and math competition for high school seniors. The finalists were chosen from
- [Talking to my FSHD](https://www.fshdsociety.org/2022/01/04/talking-to-my-fshd/) - by Haviva Ner-David Part II of excerpts from Dreaming Against the Current. I decided to talk directly to my disease. After thirty-two years, it was about time. “Are you willing to talk to me, FSHD? I know you are there.” “Yes.” “Can you tell me why you showed up in me, out of the blue?
- [ReDUX4 trial result exceeds expectations](https://www.fshdsociety.org/2021/06/24/redux4-trial-result-exceeds-expectations/) - By June Kinoshita, Director of Research and Patient Engagement "Positive benefit/risk supports losmapimod's potential to be a transformative therapy for the treatment of FSHD"-Fulcrum Therapeutics Fulcrum Therapeutics announced today that losmapimod, its experimental therapy for facioscapulohumeral muscular dystrophy, produced statistically significant improvements in function and decreased fatty infiltration of muscle in its ReDUX4 clinical trial.
- [Record Year in Grant Funding](https://www.fshdsociety.org/2021/10/11/record-year-in-grant-funding/) - $2 million allocated for 15 projects by Jamshid Arjomand, PhD, FSHD Society Following a lull imposed by the global pandemic, the FSHD Society’s support for research grants has come back with a roar, as 15 projects received more than $2 million in funding in 2021, the most ever allocated in a calendar year in the
- [Talking to my 16-year-old self](https://www.fshdsociety.org/2021/12/13/talking-to-my-16-year-old-self/) - by Haviva Ner-David The last line of my author bio reads: “Rabbi Haviva Ner-David lives with a degenerative genetic form of muscular dystrophy called FSHD, which has been one of her greatest teachers.” I was born in 1969 with the gene for FSHD, although back then the gene had not been discovered yet. I already
- [Extraordinary Measures - Updating the standard of care for FSHD](https://www.fshdsociety.org/2021/12/27/extraordinary-measures-updating-the-standard-of-care-for-fshd/) - by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us. Far too many people remain undiagnosed. Too many struggle to find useful guidance on managing their symptoms. It's a daunting task to update the medical
- [Gratitude and good wishes](https://www.fshdsociety.org/2021/12/24/gratitude-and-good-wishes/) - by Brian Jude Loiacono As I reflect back at the year 2021, I’m sure we all can agree that with the pandemic still prevalent in all of its variants, our collective trials have been constant and we have been well tested. As I reflect on this upcoming joyous season, I want to pay homage to
- [Extraordinary Measures – Understanding the socioeconomic impact of FSHD](https://www.fshdsociety.org/2021/12/16/extraordinary-measures-understanding-the-socioeconomic-impact-of-fshd/) - An aspect that is often overlooked during drug development is a cost-benefit analysis of a therapeutic treatment. Insurance companies often determine the level of coverage they are willing to provide for a new treatment based on the cost of the drug relative to the perceived cost to society. Unfortunately, insurance actuaries may model the socioeconomic
- [Everyday Mindfulness](https://www.fshdsociety.org/2021/12/20/everyday-mindfulness/) - At our December 13 Wellness Hour, Jennifer Egert led a short session on mindfulness in which she asked people to focus their awareness on their body sitting. Afterward, there was a discussion and participants noted that by focusing on how their body was in contact with the seat, the ground beneath their feet, etc., the
- [Artificial intelligence reveals some surprises](https://www.fshdsociety.org/2021/12/06/artificial-intelligence-reveals-some-surprises/) - Analysis of FSHD registry data overturns prior ideas about genetic and gender factors by Natalie Katz, MD, University of Rochester Facioscapulohumeral muscular dystrophy is a highly variable disease. While we have a good understanding of the underlying genetic mechanism that causes it, we have yet to understand why there is so much variability in the
- [Extraordinary measures - Educating doctors](https://www.fshdsociety.org/2021/11/22/extraordinary-measures-educating-doctors/) - by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally diagnosed accurately, a person may still face on an equally frustrating quest to find knowledgeable clinicians − doctors, physical therapists, pulmonologists, and other specialists −who
- [Extraordinary measures - An FSHD Society for everyone](https://www.fshdsociety.org/2021/11/15/extraordinary-measures-an-fshd-society-for-everyone/) - by June Kinoshita, FSHD Society Our mission at the FSHD Society is to find treatments and a cure for FSHD—and then make sure everyone in the world who needs it has access to it. Unfortunately, when it comes to healthcare in general, people do not have equal access. Racial and ethnic minorities, and the socioeconomically
- [Extraordinary Measures - Many shots on goal](https://www.fshdsociety.org/2021/11/22/extraordinary-measures-many-shots-on-goal/) - by Jamshid Arjomand, Chief Science Officer With a dozen or more potential FSHD therapies in the drug development pipeline, why is the FSHD Society continuing to invest substantial funds− a record $2 million this year− in grants for more basic research? The most recently funded projects include investigations into the structure and function of SMCHD1
- [Overcoming communication barriers with Project Relate](https://www.fshdsociety.org/2021/11/26/project-relate/) - https://youtu.be/EU2oCVlzEZk FSH muscular dystrophy often affects the muscles of the face, including the mouth. This can affect the ability to smile and can impair speech. Many people with FSHD experience the frustration of not being able to communicate easily. So we were excited to learn about Google's Project Relate, which is an Android app that
- [A children's book about resilience](https://www.fshdsociety.org/2021/11/26/a-childrens-book-about-resilience/) - My name is Monica Boeh and I live with FSH muscular dystrophy. I have a master's degree in education, and I have been working for a nonprofit organization whose vision is to have a barrier-free Northwest Missouri. I am part of a great group of people who assist people with disabilities and those who are
- [His father’s FSHD inspired scientist to make a breakthrough](https://www.fshdsociety.org/2021/11/11/his-fathers-fshd-inspired-scientist-to-make-a-breakthrough/) - Is this the ticket to gene therapy for muscle diseases? by June Kinoshita, Director of Research and Patient Engagement A lot of emails cross my desk every day, but one that came last September from an FSHD patient pulled me right down a rabbit hole that proved to be fantastic. It was a story from
- [FSHD Inspires Sam Ray to Build Mobility Devices](https://www.fshdsociety.org/2021/11/18/fshd-inspires-sam-ray-to-build-mobility-devices/) - by Paul Winn, Brain & Life. Reposted with permission. Sam Ray, a 15-year-old, in Tucson, AZ, talks to our writer Paul Wynn about how his rare disease motivated him to explore exoskeleton technology. Smiling and laughing are easy for most people, but not for me. It's not because I'm unhappy. It's because I have facioscapulohumeral muscular
- [Women on Wellness - Clothing Hacks and more](https://www.fshdsociety.org/2021/11/09/women-on-wellness-clothing-hacks-and-more/) - The "Women on Wellness" Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with discussion about finding clothing that is easier to manage. The group meets on the first Wednesday of every month at 5:00 pm ET. To join
- [Pregnancy and reproductive genetic counseling](https://www.fshdsociety.org/2021/11/02/pregnancy-and-reproductive-genetic-counseling/) - https://www.youtube.com/watch?v=_75SR91x_ho One of the questions we are often asked is how will pregnancy and child-bearing affect an individual with FSHD? And because FSHD is passed on from generation to generation, what are the options for parents who want to start a family? We are fortunate to have two experts on this topic, Sanne Vincenten, MD,
- [A standing army for FSHD](https://www.fshdsociety.org/2021/10/27/a-standing-army-for-fshd/) - You can make a difference! When you first found our website, you may have signed up to receive our emails, and you may, understandably, have thought you were all set. But we still have two vital, unanswered questions: Are you a person with FSHD? Where do you live? We must have this information because our clinical trial
- [AMRA Medical cites FSHD Society's support of its MRI study](https://www.fshdsociety.org/2021/10/13/amra-medical-cites-fshd-societys-support-of-its-mri-study/) - Hats off to AMRA Medical and Avidity Biosciences for adding magnetic resonance imaging (MRI) to the landmark MOVE study. The FSHD Society helped to build and expand the clinical trial research network that makes this study possible. We’re also constantly bringing stakeholders together to forge impactful collaborations like this one. MOVE will find out whether
- [FSHD drug development pipeline](https://www.fshdsociety.org/2020/12/08/fshd-drug-development-pipeline/) - Growing numbers of companies and academic laboratories are pressing forward with early-stage drug development efforts. This chart shows how far various candidate anti-DUX4 drugs have progressed along the path to FDA approval. DUX4 is considered a key gene causing FSHD. The process begins with finding a "target," or biological disease mechanism, that can be modified
- [COVID-19 Vaccine Q&A](https://www.fshdsociety.org/2021/01/27/covid-vaccine/) - This Q&A is based on the December 9 webinar with Rabi Tawil, MD, and Ghinwa Dumyati, MD, from the University of Rochester Medical Center, and the January 15 webinar hosted by the National Organization of Rare Diseases with Stephen Hahn, MD, FDA commissioner; Peter Marks, MD PhD, director of the FDA’s Center on Biologics Evaluation
- [FSHD Masterclass for physicians is available on-demand](https://www.fshdsociety.org/2021/10/18/fshd-masterclass-for-physicians-is-available-on-demand/) - 100% of doctors who took the live version said they would recommend this course to their colleagues. The FSHD Society’s highly rated CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD) is now available on-demand. Although FSHD is one of the most common forms of muscular dystrophy, it is often misdiagnosed and inadequately managed. This masterclass aims
- [Busting myths about orthotics](https://www.fshdsociety.org/2021/10/14/busting-myths-about-orthotics/) - Sponsored content from Allard USA. The FSHD Society provides this content for educational purposes and does not endorse any products or services. Always consult a healthcare professional about the use of any medical products. The decision to use a medical brace, or orthotic, is a major milestone for many people with FSHD. A dreaded one,
- [Clinical trial readiness study calls for volunteers](https://www.fshdsociety.org/2018/05/10/clinical-trial-readiness-study-calls-for-volunteers/) - by Jim Albert, Eldersburg, MD The FSHD Clinical Trial Research Network (CTRN) is currently recruiting up to 160 FSHD patients across the seven CTRN sites to participate in a study called ReSOLVE to help standardize a set of tools and measurements for future FSHD clinical drug trials. Recent genetic advances in the understanding of FSHD have
- [Anyone can MOVE for FSHD research](https://www.fshdsociety.org/2021/07/26/anyone-can-move-for-fshd-research/) - https://www.youtube.com/watch?v=vkuaKoDHXBg What’s so great about the MOVE study? A lot, if you are research geeks like us or care about getting treatments to patients sooner. MOVE is what's called an "observational" or "natural history" study of people with facioscapulohumeral muscular dystrophy (FSHD) that evaluates how symptoms and abilities change over a period of time. It
- [Women on Wellness (monthly Zoom)](https://www.fshdsociety.org/2021/09/27/women-on-wellness-monthly-zoom/) - By popular demand, we are launching our Women on Wellness Zoom support group starting on Wednesday, October 6. This meeting will take place on the first Wednesday of each month at 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT.This is our mutual support and social group for women
- [UCLA continues commitment to find treatments for FSHD with M.O.V.E. Study](https://www.fshdsociety.org/2021/09/22/ucla-continues-commitment-to-find-treatments-for-fshd-with-m-o-v-e-study/) - This is a sponsored blog post by UCLA Health as part of its 2021 Los Angeles Walk & Roll Platinum Sponsorship Partnership. If you ask a patient or their family what a FSHD treatment would do, they might tell you they dream of functional improvements such as walking becoming easier or the ability to grab
- [Genetic testing for FSHD in Asia](https://www.fshdsociety.org/2021/09/13/genetic-testing-for-fshd-in-asia/) - Article contributed by Pangenia. About Pangenia Genomics Pangenia is one of the leading diagnostic companies in Hong Kong with 15 years of experience in diagnostics and targeted treatment of hereditary diseases exemplified by neuromuscular disorders and cancers. Our diverse panel of services is well-recognized in the Asian region and beyond. The main mission of Pangenia
- [Sleep and pain, the hidden connection](https://www.fshdsociety.org/2021/09/06/sleep-and-pain-the-hidden-connection/) - https://www.youtube.com/watch?v=OcVZeQnBBck In this presentation, Heloise Hoffmann shares her study focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society members regarding self-reported sleep quality and daytime sleepiness in the largest sample surveyed to
- [Walk & Roll to Cure FSHD - All Your Questions Answered!](https://www.fshdsociety.org/2021/08/30/walk-roll-to-cure-fshd-all-your-questions-answered/) - The Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, events take place all over the US and Canada. Since it began with just a handful of events in 2018, the Walk & Roll has been a life-changing
- [Dynamic Sitting - exercising in a seated position](https://www.fshdsociety.org/2021/08/12/dynamic-sitting-exercising-in-a-seated-position/) - https://www.youtube.com/watch?v=XOXvHUaB73k Here are Dr. Nikia Stinson's slides (ppt) Equipment List (downloadable) All of these are available on Amazon. Com and other online shopping sites.
- [I still have joy in my life](https://www.fshdsociety.org/2021/08/02/i-still-have-joy-in-my-life/) - by Jean Devenport, Melbourne Beach, Florida Like many of you living with muscular dystrophy, I long knew something was wrong, but I was not sure what it was. Most of my adult life, I was focused on my severe scoliosis, but in 2004 I was diagnosed with FSHD by a neurologist who did nerve conduction tests
- [2021 Best Poster Award goes to Alec DeSimone](https://www.fshdsociety.org/2021/07/01/2021-best-poster-award-goes-to-alec-desimone/) - Alec DeSimone, PhD, currently a postdoctoral researcher at Yale School of Medicine, was the winner of the Best Poster Award at the 2021 International Research Congress, held virtually on June 24-25. The title of his poster “A live-cell drug screening platform for FSHD therapeutics,” co-authored with Drs. Angela Lek and Monkol Lek, describes a cost-effective,
- [Giorgio Tasca wins 2021 Young Investigator Award](https://www.fshdsociety.org/2021/07/01/giorgio-tasca-wins-2021-young-investigator-award/) - The 2021 FSHD Society Young Investigator Award at the International Research Congress was awarded to Giorgio Tasca, MD PhD, a neurologist at the Fondazione Policlinico Universitario in Rome, Italy. Dr. Tasca received his medical degree (MD) with honors at the Catholic University in Rome, Italy in 2005 and his PhD in Neuroscience at the same
- [Ayurvedic medicine for FSHD – My story](https://www.fshdsociety.org/2021/07/05/ayurvedic-medicine-for-fshd-my-story/) - by Kulangara Sivadas, Foothill Ranch, California Editor’s note: This story is one person’s anecdotal experience. He has asked Western-trained physicians to comment on it. Their remarks are added at the end of the story. In addition, we recommend you read this Johns Hopkins Medicine page about Ayruveda. For more than three years I’ve been contemplating
- [FSHD University Webinar - Fulcrum Clinical Trial Results](https://www.fshdsociety.org/2021/06/18/fshd-university-webinar-fulcrum-clinical-trial-results/) - Join us on June 24 at 4:00 pm US ET for this special webinar on the findings from Fulcrum Therapeutics' ReDUX4 clinical trial. The Fulcrum team will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4
- [The Job Talk](https://www.fshdsociety.org/2021/06/07/the-job-talk/) - https://www.youtube.com/watch?v=MxAzcschd2Y Lynn Stevens from Goodwill Industries of Northern Louisiana gave a superb webinar sharing much valuable information for anyone with a disability about resources to help people find and keep gainful employment. For anyone living with FSH muscular dystrophy, having this information handy can bring much peace of mind in planning the future. Noting that
- [Dave Younger's exercise arsenal](https://www.fshdsociety.org/2021/05/24/dave-youngers-exercise-arsenal/) - by David Younger, Austin, Texas Over the past ten to fifteen years, I have developed an arsenal of products that I use to stay as healthy and active as possible. When COVID started, I bought two inexpensive lung exercisers on Amazon. I use the FIGERM breathing trainer twice a day, in the morning and in
- [Dynamics of DUX4 downstream networks   ](https://www.fshdsociety.org/2021/05/19/dynamics-of-dux4-downstream-networks/) - by Lawrence J. Hayward, MD PhD, University of Massachusetts Medical School To develop robust therapies for FSHD, we need a better understanding of the sequence of events occurring at the single-cell level upon expression of DUX4, the causative gene. A recent paper by Chau et al. from the Yokomori lab at the University of California
- [Calling all parents of early-onset FSHD children](https://www.fshdsociety.org/2021/05/13/calling-all-parents-of-early-onset-fshd-children/) - The FSHD Society is launching a new chapter for families with early-onset FSHD (also called infantile FSHD). Led by Ally Roets, the chapter will meet virtually to serve people everywhere who have affected family members. Early-onset FSHD is defined by facial muscle weakness before the age of 5 and shoulder/arm weakness by age 10. Children
- [FDA grants fast track designation to Losmapimod](https://www.fshdsociety.org/2021/05/12/fda-grants-fast-track-designation-to-losmapimod/) - CAMBRIDGE, Mass., May 12, 2021 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to losmapimod for the potential treatment of facioscapulohumeral muscular dystrophy (FSHD). "There are
- [MRI in FSH muscular dystrophy research](https://www.fshdsociety.org/2021/01/25/mri-in-fsh-muscular-dystrophy-research/) - https://www.youtube.com/watch?v=Clq53tHF8Eo This month’s FSHD University webinar (video above) provided an outstanding, nontechnical explanation of magnetic resonance technology (MRI) and how it is being applied in the Fulcrum Therapeutics clinical trial of an FSHD therapeutic drug. Rosemary Shull of AMRA Medical expounded on why MRI is the “gold standard” method for imaging soft tissues such
- [New biotech is developing Genea Biocells’ FSHD drug](https://www.fshdsociety.org/2021/02/15/new-biotech-is-developing-genea-biocells-fshd-drug/) - By Alex Kiselyov, CEO, Myocea, Inc. Myocea is a biotechnology startup with a focus on neuromuscular disorders. Our product pipeline is championed by the small molecule GBC0905 (Rebastinib) aimed at the treatment of FSHD Type 1 and Type 2. Myocea was spun out of San Diego-based Genea Biocells in 2019 after its parent company Genea
- [A trio of promising advances toward treating FSHD](https://www.fshdsociety.org/2021/04/13/a-trio-of-promising-advances-toward-treating-fshd/) - Commentary by Emanuele Mocciaro, PhD, San Raffaele Scientific Institute, Milan, Italy Facioscapulohumeral muscular dystrophy (FSHD) is caused by the “anomalous” reactivation of the DUX4 gene. DUX4 has an important role at the beginning of embryo development and is subsequently turned off and kept silent throughout life. But in FSHD, aberrant expression of DUX4 in muscle
- [Arrowhead Pharmaceuticals announces FSHD drug candidate](https://www.fshdsociety.org/2021/04/15/arrowhead-pharmaceuticals-announces-fshd-drug-candidate/) - Arrowhead Pharmaceuticals, Inc., a Pasadena, California, company, today announced ARO-DUX4 as Arrowhead’s first muscle targeted investigational RNAi therapeutic candidate. Using the company's proprietary Targeted RNAi Molecule (TRIMTM) platform, ARO-DUX4 is designed to target the gene that encodes human double homeobox 4 (DUX4) protein as a potential treatment for patients with facioscapulohumeral muscular dystrophy (FSHD). Pending
- [A researcher's journey into FSHD](https://www.fshdsociety.org/2021/05/04/a-researchers-journey-into-fshd/) - https://youtu.be/24RGNpeYgzc In this FSHD University Webinar from April 15, 2021, Angela Lek, PhD, a research scientist at Yale University School of Medicine, speaks about how her husband's diagnosis with limb-girdle muscular dystrophy led to the scientific couple’s interest in the genetics of muscle-wasting diseases. She gives an engaging and outstandingly lucid explanation of the
- [Tips for FSHD Travelers](https://www.fshdsociety.org/2021/05/09/tips-for-fshd-travelers/) - by Rich Holmes, Sandwich, Massachusetts With growing numbers of people getting vaccinated against COVID-19, many are looking forward to being able to travel again. But traveling with a disability imposes challenges too. On the FSHD Society Wellness Hour of April 12, 2021, guest speakers Ray Jordan and Carden Wyckoff shared travel tips and considerations. Both
- [David Younger on managing difficult emotions](https://www.fshdsociety.org/2021/04/26/david-younger-on-managing-difficult-emotions/) - https://www.youtube.com/watch?v=yG_gWmgjmiU "I no longer live at the mercy of my mind," says David Younger, PhD, a psychologist who has lived with the physical decline that comes with his diagnosis of facioscapulohumeral muscular dystrophy. The benefits he has gained from meditation and mindfulness training are not just theoretical, but part of his lived experience. In this
- [Pivot](https://www.fshdsociety.org/2021/04/19/pivot/) - by Larry Chase Those of us who live with FSHD must “pivot” our world constantly. Pivot—the buzz word for what we all are going through and continue to experience, just like when you have "FSHD days" when it seems like there is no relief. My wife, our dog Zip, and I frequent a popular dog
- [The Future is Now for Clinical Trials](https://www.fshdsociety.org/2019/11/18/the-future-is-now-for-clinical-trials/) - Our community has been promised for decades that “one day in the future” there will be treatments for FSHD, and so it’s amazing to realize that day is almost upon us. The future is NOW for clinical trials. In 2019, we saw two Phase 2 trials—for Acceleron’s ACE-083 and Fulcrum’s ReDUX4 (losmapimod). A dozen biopharma
- [Partners in Pain, Harbingers of Hope](https://www.fshdsociety.org/2021/03/29/partners-in-pain-harbingers-of-hope/) - It was a chance meeting in the valley that divides my Galilean kibbutz Hannaton from the Bedouin village of Bir al Maksur that planted the seed for the storyline of my debut novel, Hope Valley. I was out walking my dog when I saw Hussein, a shepherd who frequents the valley, out with his sheep.
- [Notes on spinal and scapular surgery](https://www.fshdsociety.org/2021/03/22/notes-on-spinal-and-scapular-surgery/) - Excessive curvature of the lower spine, a condition called hyperlordosis, can be a particularly painful and troublesome symptom of FSH muscular dystrophy. We are often asked whether abdominal braces or surgery can help. To answer this question, Dr. Ray Huml has kindly given us permission to share an excerpt by Drs. R.K. Lark and E.W.
- [Hot off the press - FSHD Advocate](https://www.fshdsociety.org/2021/03/15/hot-off-the-press-fshd-advocate-2/) - Our new issue of the FSHD Advocate, the first of 2021, is now available online. For those of you who receive our flagship magazine by the postal service, it will be arriving over coming weeks. As the cover and stories inside emphasize, the FSHD Society's most important role in working toward a treatment is in
- [What a difference 30 years have made](https://www.fshdsociety.org/2021/03/01/30-years/) - Time flies when you have your nose to the grindstone, working with focus and determination on a lofty goal. It has been an amazing 30 years since Daniel Perez and Steve Jacobsen started the Society. Back then, almost no one was doing research on facioscapulohumeral muscular dystrophy (FSHD). The human genome had not yet been
- [“Our stories need to be shared”](https://www.fshdsociety.org/2021/03/08/our-stories-need-to-be-shared/) - An interview with Tim Hollenbeck, FSHD Radio host On the second Tuesday of every month, at 8 p.m. CT, Tim Hollenbeck fires up a live video stream on the FSHD Society’s YouTube channel to chat with a parade of interview guests, share news, and offer words of encouragement in his calm and cheerful baritone. With
- [More than a pretty pair of shoes](https://www.fshdsociety.org/2021/02/08/more-than-a-pretty-pair-of-shoes/) - by Barbara Zehetbauer-Hoehl, Vienna, Austria Three years ago, I developed a symptom called foot drop caused by my FSHD Type 2. The biggest loss, which came with losing my muscles that support my feet, were the pretty shoes that I just wasn’t able to wear anymore. I love dressing up and I love shoes, so
- [Our new Physical Therapy brochure](https://www.fshdsociety.org/2017/07/19/new-physical-therapy-brochure/) - Hot off the press, here's our updated Physical Therapy brochure! Co-written by leading FSHD experts Katy Eichinger, PhD, Shree Pandya, PT, DPT, MS, and Wendy King, PT, the brochure provides an excellent review of the literature on PT and exercise and practical guidelines for patients and therapists. If you would like to order copies, please
- [Get involved with research! FSHD-affected and FSHD-unaffected volunteers needed](https://www.fshdsociety.org/2012/07/12/get-involved-with-research-fshd-affected-and-fshd-unaffected-volunteers-needed/) - Get involved with research! FSHD-affected and FSHD-unaffected volunteers needed for research study using (MRI) and magnetic resonance spectroscopy (MRS) imaging in skeletal muscle at KKI, Baltimore, Maryland. Learn more about the study, inclusion criteria and how to get involved read HERE. For JHMIRB web summary More. For JHMIRB Study Consent Form More. For JHMIRB eFormA
- [FSH Watch Winter 2009](https://www.fshdsociety.org/2009/02/16/fsh-watch-winter-2009/) - Highlights include: Physical activity, FSH dystrophy, and you A cause that propels a career: An interview with Patrick Reed, Ph.D., Department of Physiology, School of Medicine, University of Maryland, Baltimore Jacobs Family Post-doctoral Research Award established. Family picnic raises funds for FSHD fellowship. FSH Society Annual Donor Report And much more! Read or download the
- [FSH Watch Spring 2009](https://www.fshdsociety.org/2009/04/10/fsh-watch-spring-2009/) - Highlights include: First muscle biopsies arrive at the NIH BBRI Senator Paul Wellstone FSHD Center Charity Navigator rates FSH Society ✭✭✭✭! A festive evening of music and song raises over $100,000 for research in FSH Society launches peer-to-peer team And much more! Read or download the full 2009 Spring Watch here.
- [FSH Watch Annual Research Report Summer 2009](https://www.fshdsociety.org/2009/07/16/1254/) - Our 2009 annual review of scientific research funded by the FSH Society was published in the Summer 2009 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the year with comments about their significance, opportunities for research volunteers, and the latest Society news from 2009. The full issue is available here to
- [FSH Watch Fall 2009](https://www.fshdsociety.org/2009/11/16/fsh-watch-fall-2009/) - Highlights include: On the road to treatment: Biomarkers will lead the way FSH Society advocacy efforts in Washington, D.C., continue to yield big gains in research funding Chronic pain in people with FSHD FSH Society launches peer-to-peer team And much more! Read or download the full 2009 Fall Watch here.
- [FSH Watch Winter 2010](https://www.fshdsociety.org/2010/02/16/fsh-watch-winter-2010/) - Highlights include: FSH Society and Boston Biomedical Research Institute host international conference on most prevalent form of muscular dystrophy FSH Society funds infantile FSHD research Breathing and respiration in neuromuscular disease FSH Society Annual Donor Report 2009 And much more! Read or download the full 2010 Winter Watch here.
- [FSH Watch Spring 2010](https://www.fshdsociety.org/2010/04/16/fsh-watch-spring-2010/) - Highlights include: Report from Paris: Research Institution Makes Inroads Roberts Nutrition Research Fellowship Grant The Roaring 20's: A night of wonderful nonsense End of tax season celebration for FSH Muscular Dystrophy And much more! Read or download the full 2010 Spring Watch here.
- [FSH Society Hails Major Breakthrough in FSH Muscular Dystrophy](https://www.fshdsociety.org/2010/08/19/fsh-society-hails-major-breakthrough-fsh-muscular-dystrophy/) - Watertown, MA--Daniel Perez, co-founder, President and CEO of the FSH Society and a 48-year-old patient with facioscapulohumeral muscular dystrophy (FSHD), the most common form of muscular dystrophy, hailed new findings, published today in Science, that revealed for the first time the biological mechanism causing FSHD. “This is a long-sought explanation of the exact biological workings of
- [FSH Watch Annual Research Report Summer/Fall 2010](https://www.fshdsociety.org/2010/09/16/fsh-watch-annual-research-report-summerfall-2010/) - Our 2010 annual review of scientific research funded by the FSH Society was published in the Summer/Fall 2010 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the year with comments about their significance, opportunities for research volunteers, and the latest Society news from 2010. The full issue
- [FSH Watch Winter 2011](https://www.fshdsociety.org/2011/02/16/fsh-watch-winter-2011/) - Highlights include: Highlight of neuromuscular clinics that might be of interest to patients and their families From "children" to "strong adults": a family's journey with FSHD FSH Society annual donor report 2010 Walk "n" Roll for FSH Muscular Dystrophy And much more! Read or download the full 2011 Winter Watch here.
- [FSH Watch Spring 2011](https://www.fshdsociety.org/2011/04/16/fsh-watch-spring-2011/) - Highlights include: FSH friends for the journey FSH Society establishes collaboration with Stanford University FSH Society grants recently awarded End of tax season celebration for FSH muscular dystrophy raises $30,000 for society. And much more! Read or download the full 2011 Spring Watch here.
- [FSH Watch Summer Annual Research Report 2011](https://www.fshdsociety.org/2011/07/16/fsh-watch-summer-annual-research-report-2011/) - Our 2011 annual review of scientific research funded by the FSH Society was published in the Summer 2011 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the year with comments about their significance, opportunities for research volunteers, and the latest Society news from 2011. The full issue is available here to
- [FSH Watch Fall 2011](https://www.fshdsociety.org/2011/11/16/fsh-watch-fall-2011/) - Highlights include: Scapulothoratic fusion in FSHD: a surgical wiring technique has been utilized for fixation of the scapula to the adjacent ribs New books for your consideration Pregnancy and birth outcomes in women with FSHD Highlight of neuromuscular clinics that we believe might be of interest to patients and their families And much more! Read
- [Best practice guidelines on genetic diagnostics of  FSHD are now available](https://www.fshdsociety.org/2011/12/20/best-practice-guidelines-on-genetic-diagnostics-of-fshd-are-now-available/) - Best practice guidelines on genetic diagnostics of FSHD are now available and published in the journal Neuromuscular Disorders! FSH Society sponsors workshop held June 9, 2010, in Leiden, The Netherlands. More
- [FSH Watch Winter 2012](https://www.fshdsociety.org/2012/02/16/fsh-watch-winter-2012-2/) - Highlights include: FSH Society Annual Donor Report FSH Society 2012 International Patient/Researcher Network Meeting Tentative Program Grant Awards for August 2011 New book Still Walking by Bill Moss. “These memoirs are the inspirational, moving, blunt and at times very funny account of how a senior and seemingly all-powerful Macquarie banker struggled for years through physical discomfort, pain and the many
- [FSH Watch Summer/Fall 2012](https://www.fshdsociety.org/2012/09/16/fsh-watch-summerfall-2012/) - Highlights include: Introduction of June Kinoshita, the new Executive Director of the FSHD Society. She describes a plan to raise visibility of FSH muscular dystrophy. Atlanta Patient-Researcher meeting. The state of FSHD and what patients might expect in the next decade. A guide for schools is now available to help teachers and parents prepare for
- [Celebrities Come Out for FSH Muscular Dystrophy](https://www.fshdsociety.org/2012/10/03/celebrities-come-fsh-muscular-dystrophy/) - Los Angeles, CA / October 03, 2012 Fans of the Fox TV hit series “Glee” know [Max Adleras the actor behind “Dave Karofsky”, the closeted football jock who tormented Kurt Hummel but later took a courageous stand against bullying. Off camera, Adler is a gentle champion for FSH muscular dystrophy (FSHD), a disabling muscle disease from which
- [Musical Stars Shine for FSH Muscular Dystrophy](https://www.fshdsociety.org/2012/09/25/musical-stars-shine-fsh-muscular-dystrophy/) - New York, NY / September 25, 2012 For years, Steven Blier has occupied the limelight as a celebrated pianist and advocate for the art song. He has toured with opera superstars like Renée Fleming. Singers line up at his door to be coached to greatness. As Artistic Director of the New York Festival of Song, he brings vocal
- [GlaxoSmithKline PLC (GSK) announces partnership to develop therapeutics to treat FSHD](https://www.fshdsociety.org/2012/12/12/glaxosmithkline-plc-gsk-announces-partnership-to-develop-therapeutics-to-treat-fshd/) - GlaxoSmithKline PLC (GSK) announces partnership to develop therapeutics to treat FSHD. The goal of the new agreement is to develop a small-molecule-based medicine to potentially reverse FSHD
- [The FSH Society Answers Questions About the New Gene for FSH Muscular Dystrophy](https://www.fshdsociety.org/2013/01/24/fsh-society-answers-questions-new-gene-fsh-muscular-dystrophy/) - Boston, MA / January 24, 2013 Facioscapulohumeral muscular dystrophy (FSHD) is a disease most people have never heard of, even though it is one of the most common forms of muscular dystrophy. Having a name that is daunting to pronounce and spell doesn’t help. But being an “invisible” disease has its up side. Frustrated by
- [FSH Society funds $393,489 for five (5) new research awards for the August 2012 grant cycle!](https://www.fshdsociety.org/2013/01/29/fsh-society-funds-393489-for-five-5-new-research-awards-for-the-aggust-2012-grant-cycle/) - FSH Society Scientific Advisory Board (SAB) recommends and Board of Directors funds $393,489 for five (5) new research awards for the August 2012 grant cycle! PDF
- [The Centers for Disease Control Spotlights FSH Muscular Dystrophy](https://www.fshdsociety.org/2013/02/11/centers-disease-control-spotlights-fsh-muscular-dystrophy/) - Boston, MA / February 11, 2013 At the age of 28, Kevin Kirby was diagnosed with a disease that most people have never heard of. Called Facioscapulohumeral Muscular Dystrophy, or FSHD, the disorder is named for the body areas that are typically affected: the face (facio-), shoulder blades (scapula-) and upper arms (humeral). The disease
- [FSH Watch Winter 2013](https://www.fshdsociety.org/2013/02/16/fsh-watch-winter-2013/) - Highlights include: Genetic Source of FSHD Type 2 pinpointed and outlined. FSHD patient climbs for hours through the mountains to visit gorillas in Uganda. FSH Society funds advances in understanding and treating FSHD. A Fish for FSHD: a genetically engineered zebrafish develops the hallmarks of FSHD, providing a new animal model for understanding the disease.
- [Marjorie  Bronfman Fellowship Grant yields a new transgenic mouse model with Human DUX4 D4Z4 advancing clinical trials readiness efforts](https://www.fshdsociety.org/2013/04/04/marjorie-bronfman-fellowship-grant-yields-a-new-transgenic-mouse-model-with-human-dux4-d4z4-advancing-clinical-trials-readiness-efforts/) - Research project initiated in 2003 under a FSH Society Marjorie Bronfman Fellowship Grant yields a new transgenic mouse model with Human DUX4 D4Z4 advancing clinical trials readiness efforts and our understanding of FSHD Press Release at PRWeb. Publication online at PLOS Genetics
- [FSH Watch Spring 2013](https://www.fshdsociety.org/2013/06/11/latest-fsh-watch-spring-2013-newsletter/) - The Spring 2013 issue of FSH Watch is now available online for your enjoyment. You can access it by clicking here. Read about recent research advances, including the D4Z4 mouse from Leiden, the collaboration between Glaxo Smith Kline and the University of Washington to find drugs targeting the DUX4 pathway, and the curious link between
- [The FSH Society Issues Research Grant](https://www.fshdsociety.org/2013/08/06/the-fsh-society-issues-research-grant-2/) - FSH Society awards a $48,909 research grant to Dr. Jeffrey Statland, University of Rochester, Rochester, New York, Fellow and Senior Instructor in the Department of Neurology, so that he can evaluate electrical impedance myography (EIM) as a tool for quantifying the muscle structure of FSHD patients. Today, the FSH Society, a Massachusetts based non-profit that is
- [The 2013 International Research Consortium & Research Planning Meetings](https://www.fshdsociety.org/2013/09/09/the-2013-international-research-consortium-research-planning-meetings-to-be-held-in-cambridge-massachusetts-on-october-21-22-2013/) - Dear Colleagues, The 2013 FSH Society FSHD International Research Consortium workshop will be held on Monday & Tuesday, October 21-22, 2013, at the Massachusetts Institute of Technology, in Cambridge, Massachusetts. Tentatively, Monday will be a full workshop day and Tuesday will be a two-thirds day of research planning efforts. The organizers will be finalizing the
- [FSH Society accolade for George Padberg](https://www.fshdsociety.org/2013/09/18/fsh-society-pioneer-award/) - FSH SOCIETY PIONEER AWARD PRESENTED TO GEORGE W. PADBERG, MD, PHD, HEAD OF THE DEPARTMENT OF NEUROLOGY, ST RADBOUD UNIVERSITY MEDICAL CENTRE, NIJMEGEN, THE NETHERLANDS AT HIS VALEDICTORY LECTURE HELD AT GROTE OF ST STEVENSKERK, NIJMEGEN, THE NETHERLANDS SEPTEMBER 13, 2013 The FSH Society is pleased to present the first Pioneer Award for outstanding contributions
- [FSH Watch Annual Research Report 2013](https://www.fshdsociety.org/2013/10/16/fsh-watch-annual-research-report-is-out/) - Our annual review of scientific research funded by the FSH Society has just been published in the Summer/Fall 2013 issue of the FSH Watch newsletter. The issue includes a list of the top papers from the past year with comments about their significance, opportunities for research volunteers, and the latest Society news. The full issue
- [Human Muscle Growing in Mice Provides a New Research Tool for FSHD](https://www.fshdsociety.org/2014/01/24/human-muscle-growing-mice-provides-new-research-tool-fshd/) - Lexington, Mass. (PRWEB) January 24, 2014. As published online today in Human Molecular Genetics, support from the FSH Society, a patient-driven nonprofit, has enabled people with facioscapulohumeral muscular dystrophy (FSHD) to donate muscle tissue, which scientists have succeeded in grafting into mice, providing a new tool for conquering this devastating muscle-wasting disease. Among the most common
- [FSH Watch Winter 2014](https://www.fshdsociety.org/2014/02/05/fsh-watch-winter-2014-issue/) - Highlights include: Report from the 2013 International Research Consortium meeting in Cambridge, Massachusetts. Advances in basic research, clinical trials and future drug targets. Introducing our new Celebrity Honorary Board. Stars from film, TV, music and sports sign on to help raise awareness. University of Massachusetts Medical School opens new FSHD research center and clinic. Photos
- [First FSH Muscular Dystrophy High-Throughput Drug Discovery Study Published](https://www.fshdsociety.org/2014/02/06/first-fsh-muscular-dystrophy-high-throughput-drug-discovery-study-published/) - From PRWeb press release, February 6, 2014. In research funded by the FSH Society, a patient advocacy organization, a Minnesota team has identified drugs that block the toxic effects of a gene involved in a most common form of muscular dystrophy. Facioscapulohumeral muscular dystrophy (FSHD) is among the most common muscle-wasting diseases, affecting more than
- [Progress in 2013](https://www.fshdsociety.org/2014/02/06/progress-2013/) - After wrapping up what was a busy first month of 2014, we finally have a moment to look back on 2013 and acknowledge what a busy – and successful – year it was! Throughout 2013, we expanded our networks locally and nationally, partnering with the University of Massachusetts’ Wellstone Center for FSHD Research and Training.
- [Lives touched by FSH muscular dystrophy](https://www.fshdsociety.org/2014/02/17/lives-touched-fsh-muscular-dystrophy/) - https://www.youtube.com/watch?v=Z_eQuzOQIh0
- [The FSH Society Issues Six Research Grants](https://www.fshdsociety.org/2014/03/24/fsh-society-issues-six-research-grants/) - Today, the FSH Society announced that it has awarded six grants totaling more $609,525 to new research projects. Through these studies, the FSH Society’s fellowship program aims to gain insights and achieve significant milestones into the research of FSHD, one of the most prevalent types of muscular dystrophy. Research grants most recently awarded by the
- [Michelle Mackay and Retired Kellogg’s CEO David Mackay Host Second Annual FSH Society Fundraiser](https://www.fshdsociety.org/2014/05/29/michelle-mackay-retired-kelloggs-ceo-david-mackay-host-second-annual-fsh-society-fundraiser/) - From PRWeb Couple Builds upon Success of Last Year’s Event to Raise Awareness of Little-Known Disease at Lakeside Michigan Event Gull Lake, Michigan – May 25, 2014 – After last year’s wildly successful event,Michelle Mackay, wife of retired Kellogg’s CEO David Mackay, and her family will host the second annual festive event to raise awareness
- [FSH Watch Spring 2014](https://www.fshdsociety.org/2014/05/31/fsh-watch-spring-2014-issue/) - You can read and download it by clicking here. Highlights of this issue include the following: Details about FSHD Connect, our biennial meeting that brings together patients and families with some of the world's foremost researchers and clinicians for two days of immersive learning and networking. The latest scientific advances including the discovery of two
- [Opera legend Frederica von Stade to sing for FSH Society](https://www.fshdsociety.org/2014/06/11/opera-legend-frederica-von-stade-sing-fsh-society/) - From PRWeb On Thursday July 24, 2014, the FSH Society will hold a very special benefit concert at Yoshi’s Jazz Club in San Francisco with opera’s legendary singer, Frederica von Stade, who will perform an intimate and personal suite of songs with the acclaimed pianist Steven Blier. Net proceeds for “Songs in the Key of Steven Blier,”
- [FSH Watch Winter 2012](https://www.fshdsociety.org/2014/07/16/fsh-watch-winter-2012/) - Highlights include: FSH Society Annual Donor Report Grant awards for August 2011 FSH Society 2012 International Patient/Researcher Network Meeting Still Walking by Bill Moss, an "inspirational, moving, blunt and at times very funny account of how a senior and seemingly all-powerful Macquarie banker struggled for years through physical discomfort, pain and the many barriers thrown
- [FSH Society's International Meeting to Bring Together Patients & Researchers From Around the World to Explore New Insights on Rare Disease](https://www.fshdsociety.org/2014/08/16/fsh-societys-international-meeting-bring-together-patients-researchers-around-world-explore-new-insights-rare-disease/) - The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Biennial International Network Meeting. The meeting will be the one of the largest gatherings of FSHD patients, clinicians and researchers providing two days of immersive learning and community-building. The event will be
- [2014 FSHD Connect attracts over 200 people](https://www.fshdsociety.org/2014/08/17/2014-fshd-connect-attracts-200-people/) - 2014 FSHD Connect, the FSH Society's biennial international conference of patients, families, researchers and clinicians, was held in Boston on August 16-17th. Over 200 people attended, the largest such gathering to date. In addition to lectures by a stellar faculty of world-class researchers, attendees gathered in breakout sessions to discuss a wide variety of topics that
- [FSHD is one of the most prevalent neuromuscular disorders](https://www.fshdsociety.org/2014/09/01/fshd-one-prevalent-neuromuscular-disorders/) - Many researchers have long suspected that the number of individuals with FSHD is significantly greater than has been reported. A new study from the Netherlands bears out this suspicion and finds that the prevalence of FSHD is 12 in 100,000 (or one in 8,333)—more than double the commonly cited figure of five in 100,000. At
- [FSHD researchers gather in San Diego](https://www.fshdsociety.org/2014/10/17/fshd-researchers-gather-san-diego/) - The 2014 FSH Society FSHD International Research Consortium workshop is being held as an ancillary meeting on Friday and Saturday, October 17-18, 2014, prior to the opening of the American Society for Human Genetics (ASHG) annual conference at the San Diego Marriott Marquis & Marina, San Diego Ballroom A, North Tower, Lobby Level, 333 West Harbor Drive, in
- [New biotech targets FSHD](https://www.fshdsociety.org/2014/10/18/new-biotech-targets-fshd/) - Three entrepreneurs who have been affected personally by FSHD announced at this year's FSHD Champions meeting that they have established a biotech dedicated to developing a treatment for FSHD. The new company, called Facio Therapies, will develop a small molecule that boosts the activity of the enzyme SMCHD1. Mutations in the SMCHD1 gene have been linked
- [FSH Watch Summer/Fall 2014 issue is out](https://www.fshdsociety.org/2014/10/23/fsh-watch-summerfall-2014-issue/) - Highlights include: Annual research report, with updates from FSH Society grant recipients. Groundbreaking study establishing that FSHD may be the most prevalent of muscular dystrophies. A new NIH-funded Wellstone Center for Muscular Dystrophy in Seattle, Washington. The life-changing impact of the #FSHDSelfies campaign. A genetically engineered mouse with an on-off switch for DUX4. American Society
- [FSHD Connect conference slides are here!](https://www.fshdsociety.org/2014/11/17/fshd-connect-slides/) - Here are the slide decks from the 2014 FSHD Connect conference. We are still missing a few and are working to complete the collection. Alexandra Belayew: Several ways to go DUX hunting FSH Society: FSHDselfies campaign FSH Society: Fundraising workshop Jefferey Statland: Unlocking the clinical trial toolbox Kathryn Wagner: Progress towards clinical trials Louis Kunkel:
- [Rocking the boat with FSHD - The Ryan Levinson Story](https://www.fshdsociety.org/2014/12/08/rocking-boat-fshd-ryan-levinson-story/) - “Muscular dystrophy is something I might have,” Levinson said. “But it doesn’t define who I am.” Ryan Levinson, of San Diego California, was diagnosed with Fascioscapulohumeral muscular dystrophy (FSHD) in 1996. Though he suffers from muscle loss typical of most people with FSHD, and can no longer hold up his arms, do a sit up,
- [The Truth Hurts, but I Can Bear It](https://www.fshdsociety.org/2015/01/08/truth-hurts-can-bear/) - The following essay was written by Zabrisa, a 16 year old with FSHD who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears--what are those things in your ears?”
- [A recap of 2014 research highlights](https://www.fshdsociety.org/2015/01/14/recap-2014-research-highlights/) - Check out our press release "A Look Back: FSHD Research Advances in 2014," which summarizes some important advances in our understanding of medical as well as fundamental scientific issues. These include new data on reduced lung capacity in FSHD patients, the first high-throughput drug screen for potential treatments, clues as to why muscles are targeted by
- [Meet Kyle Bennett, snowboarder](https://www.fshdsociety.org/2015/01/25/meet-kyle-bennett-snowboarder/) - https://www.youtube.com/watch?v=rzhoYylVLQI Kyle Bennett is a 23 year old college student in Sacramento, California, who has FSH muscular dystrophy. An outstanding baseball player when he was younger, he had to give that up. And then he discovered snowboarding. "I knew I'd found something that will change my life forever," he says. His dream is to show younger kids
- [aTyr Announces First FSHD Clinical Trial of Resolaris™](https://www.fshdsociety.org/2015/01/28/atyr-announces-first-fshd-patient-study-resolaris/) - San Diego-based biotech company aTyr Pharma announced today its first clinical trial in FSHD patients of its investigational new drug Resolaris™. The Phase 1b/2 study is a double-blind, placebo-controlled, multiple ascending dose trial in up to 44 FSHD patients at multiple sites in the European Union. The exploratory trial is designed to evaluate safety, tolerability, pharmacokinetics and
- [FSH Watch Winter 2015 issue is out](https://www.fshdsociety.org/2015/02/27/fsh-watch-winter-2015-issue/) - Highlights include: Summary of our 2014 FSHD Connect Conference held in Boston. Senator Elizabeth Warren addresses the 2014 FSHD Connect Conference. The essential role epigenetics plays in FSHD. Meet the new FSH Society staff members. The effects of DUX4 expression on muscle cells. The FSH Society's 2014 International Research Meeting. Antioxidant supplement trial results. New FSHD
- [How my progressive disease taught me that it's okay to be human](https://www.fshdsociety.org/2015/03/10/progressive-disease-taught-okay-human/) - By Kristin Duquette My body constantly changes and at times, I feel like there's nothing I can do about it. Every time I lose another piece of mobility, my mind flashes back to memories and experiences of loss contributed to my body and this condition. I break down because sometimes it's just too much to
- [Reflecting on FSHDselfies](https://www.fshdsociety.org/2015/03/01/reflecting-fshdselfies/) - By Mia Archuleta, Granbury, Texas I have been thinking about people wondering exactly how the FSHDselfies have brought awareness to FSH dystrophy. Here are just a few examples of my journey since posting them. I attend a Bible study group that I absolutely love. In the year that I have been there, everyone has welcomed
- [Bone Health in FSHD--What do I need to know?](https://www.fshdsociety.org/2015/04/27/bone-health-fshd-need-know/) - Special talk by Dr. Carla Grosmann from the Kennedy Krieger Institute Mid-Atlantic Patient Meeting Saturday, May 2, 2015. Noon-3:00 PM Will be live streamed over the FSH Society's YouTube channel. Bone health is a topic that until recently has not been discussed in the context of FSHD, but we are beginning to realize that it is
- [aTyr Receives U.S. FDA Orphan Designation for FSHD drug](https://www.fshdsociety.org/2015/04/28/atyr-receives-u-s-fda-orphan-designation-for-fshd-drug/) - San Diego-based aTyr Pharma ("aTyr"), a biotherapeutics company engaged in the discovery and development of Physiocrine-based therapeutics to address rare diseases, announced today that Resolaris™ has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for the treatment of facioscapulohumeral muscular dystrophy (FSHD). Resolaris, an investigational new drug representing aTyr's first Physiocrine-based product
- [Facio partners with Evotec and initiates FSHD drug discovery program](https://www.fshdsociety.org/2015/05/01/facio-partners-with-evotec-and-initiates-fshd-drug-discovery-program/) - From the Facio Therapies website Facio Therapies and Evotec have entered into an agreement aimed at the identification of compounds showing activity as a potential treatment to stop the progression of FSHD. This agreement marks the start of finding a drug to overcome FSHD. Facio’s drug discovery program aims to identify compounds that increase the
- [#CureFSHD. Share an image. Change a life.](https://www.fshdsociety.org/2015/05/07/curefshd-share-an-image-change-a-life/) - You can share images and facts about FSHD over your social media channels by visiting our #CureFSHD campaign page here.
- [FSH Society funds genome editing project](https://www.fshdsociety.org/2015/05/12/fsh-society-funds-genome-editing-project/) - Genome Editing, or the ability to make designer changes to the human genome, was once firmly in the realm of science fiction, but recent discoveries have changed that. Although it is still not possible to change the genome of all cells in an individual's body, it is now possible to make designer changes in cells
- [Clinical Trial Readiness for Facioscapulohumeral muscular dystrophy](https://www.fshdsociety.org/2015/05/30/clinical-trial-readiness-for-facioscapulohumeral-muscular-dystrophy/) - The FSH Society is co-funding the second FSHD Trial Preparedness Workshop. The Workshop, held from May 29-30, 2015, at the University of Rochester Medical Center in Rochester, New York, will convene more than 50 stakeholders from around the world, including representatives from industry, the Food and Drug Administration, National Institutes of Health, and patient advocacy groups,
- [Bone health for FSHD patients](https://www.fshdsociety.org/2015/06/28/bone-health-for-fshd-patients/) - Carla Grosmann, MD, of the Kennedy Krieger Institute and University of California San Diego gave this talk about bone health at the FSH Society's Mid-Atlantic patient network meeting on June 27, 2015. We recommend listening through earphones as the audio did not record well. To download slides, click -> Carla Grosmann MD, Bone health in FSHD.
- [FSH Society grant awards for February 2015 cycle](https://www.fshdsociety.org/2015/07/08/fsh-society-grant-awards-for-february-2015-cycle/) - $263,502 awarded Since 1998, the FSH Society has transformed FSHD research by providing grants for vital start-up funding for investigators in FSHD and research projects on FSHD. The milestones and insights gained are significant. The fellowship program allows innovative and entrepreneurial research to develop, prove successful, and ultimately to attract funding from large funding sources such as
- [FSH Society Awards New Round of Research Grants to Support Critical Research on FSH Muscular Dystrophy](https://www.fshdsociety.org/2015/07/24/fsh-society-awards-new-round-of-research-grants-to-support-critical-research-on-fsh-muscular-dystrophy/) - From PRWeb BOSTON, MA (PRWEB) JULY 24, 2015. The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral muscular dystrophy (FSHD), announced a new round of grant award recipients bringing the Society’s total grant awards to over $890,000 in 2015. This round of award winners were among a
- [Hot off the press: FSHD care guideline](https://www.fshdsociety.org/2015/07/27/hot-off-the-press-fshd-care-guideline/) - Evidence-based, if incomplete, new guideline is a major step forward. All too often, FSHD patients encounter doctors whose knowledge of the disease seems to be gleaned from dusty textbooks. A patient disabled by pain might be told that “pain is not associated with FSHD.” Or a physician may not think to order lung function tests,
- [Kristin Duquette speaks about the 25th Anniversary of the Americans with Disabilities Act with Huffington Post Live](https://www.fshdsociety.org/2015/08/01/kristin-duquette-speaks-about-the-25th-anniversary-of-the-americans-with-disabilities-act-with-huffington-post-live/) - The Huffington Post hosted a live discussion around the 25th anniversary of the Americans With Disabilities Act. Our very own Kristin Duquette, a decorated athlete and activist, participated in the conversation which focused on how the landmark law has impacted the lives of millions. Other panelists included Michael Morris, executive director of the National Disability
- [Carden Wyckoff on Living with Muscular Dystrophy](https://www.fshdsociety.org/2015/08/05/carden-wyckoff-living-with-muscular-dystrophy/) - FSH Society Ambassador Carden Wyckoff recently created a series of posts on Avelist regarding misconceptions and living with FSHD. Below is her latest post on living with muscular dystrophy as she hopes to open minds and bring awareness to the various types of disabilities people live with on a daily basis. For more articles, please
- ["I decided to fight back"](https://www.fshdsociety.org/2015/08/17/i-decided-to-fight-back/) - By Russell Caratenuto, FSH Society Ambassador As a child I never second-guessed my ability to stick out my shoulder blades and make what my friends would call "wings". This difference never stopped me from being the most athletic child I could possibly be. Up until puberty, I was among the fastest, strongest, and most physically
- [International facioscapulohumeral muscular dystrophy research conference in Boston](https://www.fshdsociety.org/2015/08/20/international-facioscapulohumeral-muscular-dystrophy-research-conference-in-boston/) - The FSH Society’s 2015 Facioscapulohumeral Muscular Dystrophy (FSHD) International Research Consortium and Planning Meeting will convene in Boston this year, on October 5-6. This meeting is the largest annual forum for research professionals and clinical researchers to share the latest findings in FSHD research. For more information click here.
- [Become involved with our FSHD Be Strong Campaign!](https://www.fshdsociety.org/2015/08/21/become-involved-with-our-fshd-be-strong-campaign/) - Want to see a shirt that will knock your socks off? In addition to style, for every shirt or sweatshirt sold, 100% of the profits goes back to the FSH Society to support research and education in order to treat and cure patients with FSHD. See the shirt now! [spacer height="20px"] Our new shirt started
- [2015 Spring/Summer issue of FSH Watch is out!](https://www.fshdsociety.org/2015/08/21/2015-springsummer-issue-of-fsh-watch-is-out/) - The latest issue of our FSH Watch newsletter has just come out. You can download it here. Highlights include: The first evidence-based FSHD care guideline has been published. What is it? How does this empower the patient? (Page 1). #FSHDStronger, our new awareness campaign (Page 1). The decision to stop working: what you need to know. (Page
- [Why seek genetic testing for Facioscapulohumeral muscular dystrophy?](https://www.fshdsociety.org/2015/08/31/why-seek-genetic-testing-for-facioscapulohumeral-muscular-dystrophy/) - Even without treatment, a diagnosis is therapeutic By Asifa Lalji (from her article in the FSH Watch Newsletter Spring/Summer 2015) When the Canadian provincial government of British Columbia decided it would not provide national health insurance coverage for genetic testing of FSHD, it triggered this response from a constituent. She raises important arguments that could
- [FSH Society Beneficiary of Variety of Fall Fundraising Events](https://www.fshdsociety.org/2015/09/01/fsh-society-beneficiary-of-variety-of-fall-fundraising-events/) - From PRWeb The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral muscular dystrophy (FSHD), will be the beneficiary of a collection of fundraising events this fall. From Boston to Los Angeles, each event has the same mission – to raise awareness of the FSH Society and
- [Be an Advocate to #CureFSHD](https://www.fshdsociety.org/2015/09/05/be-an-advocate-to-curefshd/) - By FSH Society Ambassador Trisha Sprayberry I'm sure everyone knows about the ALS ice bucket challenge: folks dousing themselves with icy buckets of water for ALS. This campaign took off nationally with some major celebrities dressing down and ice-bucketing themselves to rally the country and raise millions toward research on ALS. Last summer, Max Adler, the actor
- [Doug & Gracie on Philadlephia's Fox29 News!!](https://www.fshdsociety.org/2015/09/12/doug-gracie-on-philadlephias-fox29-news/) - This just in from Doug Craig's Facebook page! We were walking down Market Street in Philly and came upon the Fox 29 station. We decided to pitch our story, and after trying unsuccessfully to enter the building were given a phone number to call. I told them what our campaign was about and was informed
- [Webinar with Dr. Rabi Tawil](https://www.fshdsociety.org/2015/09/22/webinar-with-dr-rabi-tawil/) - Thursday October 1, 2015 8:00-9:00 PM EST The FSH Society is delighted to host this webinar and Q & A session with Rabi N. Tawil, MD. Dr. Tawil is Co-Director of the MDA Neuromuscular Disease Clinic at the University of Rochester. He is the lead author of "Evidence-based guideline summary: Evaluation, diagnosis, and management of facioscapulohumeral muscular
- [New brochure on facioscapulohumeral muscular dystrophy](https://www.fshdsociety.org/2015/09/25/new-brochure-on-facioscapulohumeral-muscular-dystrophy/) - We're excited to announce the arrival of our new "About FSHD" brochure. Updated with the latest information on genetics, symptoms, diagnosis, patient care and more, this is your essential guide to understanding facioscapulohumeral muscular dystrophy, whether you have just been diagnosed or have lived with FSHD for years. The brochure includes a convenient medic alert
- [Next New England member meeting November 8](https://www.fshdsociety.org/2015/10/01/next-new-england-member-meeting-november-8/) - Our next FSH Society member meetings for the New England region will be on Sunday, November 8, noon to 3PM. Kirsten Neves will be hosting us in the tasting room at her family's craft beer business, Tuckerman Brewing Company of Conway, New Hampshire. Join us for potluck, socializing and strategizing! Details here.
- [International workshop spotlights progress in facioscapulohumeral muscular dystrophy research](https://www.fshdsociety.org/2015/10/14/international-workshop-spotlights-progress-in-facioscapulohumeral-muscular-dystrophy-research/) - Report by Charis Himeda, PhD The FSH Society's 2015 International Research Consortium and Research Planning Meetings, held in Boston on October 5-6, 2015, brought together over 100 investigators, including leaders in FSHD research and many industry sponsors, to discuss advances made over the past year. In a striking change from previous years, the majority of
- [Ghostly Gala to auction luxury leather goods with a back story](https://www.fshdsociety.org/2015/10/15/ghostly-gala-to-auction-luxury-leather-goods-with-a-back-story/) - The Ghostly Gala, the first-ever fundraising gala in Los Angeles for the FSH Society, has scored another coup with the donation of a collection of stylish, exquisitely crafted leather accessories from Anson Calder. At the Ghostly Gala auction, you will have an exclusive opportunity to receive the first bag off of the production line, along with three components
- [Gene Interference Technology Used Against FSH Muscular Dystrophy Genetic Defect](https://www.fshdsociety.org/2015/11/04/gene-interference-technology-used-against-fsh-muscular-dystrophy-genetic-defect/) - Proof-of-principle study is the first to use CRISPR technology on the “repeat genome,” as well as its first successful use in primary human muscle cells BOSTON, MA (PRWEB) NOVEMBER 04, 2015. The FSH Society, the award-winning non-profit and global leader in the quest to cure Facioscapulohumeral Muscular Dystrophy (FSHD), announced that an FSH Society-funded research team
- [Enroll in the Combined Federal Campaign!](https://www.fshdsociety.org/2015/11/13/enroll-in-the-combined-federal-campaign/) - The Combined Federal Campaign (CFC) is the world's largest and most successful annual workplace charity campaign, with almost 200 CFC campaigns throughout the country and overseas raising millions of dollars each year. The FSH Society is featured on Best of the CFC! Federal, civilian, postal, and military employees can enroll to support charities during the
- [Dogs destined to develop muscular dystrophy evade their genetic fate](https://www.fshdsociety.org/2015/11/17/dogs-destined-to-develop-muscular-dystrophy-evade-their-genetic-fate/) - Golden retrievers with the Duchenne mutation show that disease-modifying genes may provide routes to treat a genetic disorder; possible parallels to facioscapulohumeral muscular dystrophy. Research led by Louis M. Kunkel, PhD, a member of the FSH Society’s board of directors and scientific advisory board, demonstrates that a disease might be treated by finding a gene
- [Washington Post features FSH muscular dystrophy story](https://www.fshdsociety.org/2015/11/19/washington-post-features-fsh-muscular-dystrophy-story/) - Today's Washington Post featured a report on work by a research team that was described in an FSH Society press release. The Post story, "How CRISPR could lead to a cure for muscular dystrophy," provides an excellent description of the CRISPR/dCas9 technology that was used to suppress the expression of DUX4 and includes an educational video on CRISPR. The
- [In Sacramento, orthotics and scooters](https://www.fshdsociety.org/2015/12/01/sacramento-meeting/) - On November 4th, fourteen members of the Sacramento FSH Society Support Group met at Louie's restaurant for lively discussion, fun and good Chinese food. We were joined by John Dorsett, M.D. of the University of California, Davis Medical Center's Department of Physical Medicine and Rehabilitation. Dr. Dorsett was there to answer questions from the group on mobility issues. Many of
- [Update on Early-Onset FSH Muscular Dystrophy Study](https://www.fshdsociety.org/2015/12/11/update-on-early-onset-fshd-study/) - Insights on symptoms, biology, and quality of life By Yi-Wen Chen, PhD and Jean Mah, MD While most people with FSHD develop muscle weakness during late teen years or adulthood, about 4 percent of patients have early-onset FSHD. Patients with early-onset FSHD develop disease symptoms early in life (facial weakness before 5 years old and
- [What FSH Muscular Dystrophy Has Given Me](https://www.fshdsociety.org/2015/12/11/what-fshd-has-given-me/) - Learn, let go, and find beauty in new places By Meredith L. Huml, Raleigh, North Carolina As a muscular dystrophy sufferer—I was diagnosed with FSHD at Duke University’s Muscular Dystrophy Association (MDA) Center in 2003—the best advice I could offer someone who is newly diagnosed would be, “Don’t hesitate to educate yourself on your affliction.”
- [Hot off the press! FSH Watch Fall 2015 issue](https://www.fshdsociety.org/2015/12/17/hot-off-the-press-fsh-watch-fall-2015-issue/) - This October we had our first-ever gala in Los Angeles, an incredibly fun Halloween costume ball aptly named “A Ghostly Gala to Vanish FSHD.” There, June spoke of the importance of raising public awareness, because you first must make something visible before you can make it vanish. That’s just Magic 101. But it’s a serious point.
- [Los Angeles Abilities Expo, Calling All Artists!](https://www.fshdsociety.org/2016/01/05/los-angeles-abilities-expo-calling-all-artists/) - FSH Society Board member Amy Bekier is organizing an FSH Society booth at the 2016 Los Angeles Abilities Expo (February 5-7) on the theme of artists living with FSHD. Creative artists of all genres are welcome to join our booth. It's a great opportunity to represent their talent to thousands of attendees. Admission is free so invite your
- [Acceleron plans to launch Phase 2 FSHD trial this year](https://www.fshdsociety.org/2016/01/05/acceleron-announces-plan-to-launch-fshd-phase-2-trial-this-year/) - According to a Boston Business Journal story, Cambridge, Massachusetts-based biotech Acceleron Pharma has plans to test its ACE-083 compound in facioscapulohumeral muscular dystrophy patients in a phase 2 clinical trial later this year: "The company presented top-line data from a Phase 1 trial in healthy volunteers showing the drug, which is injected into the muscle, was able
- [Ultragenyx Pharmaceutical to sponsor FSHD drug development project](https://www.fshdsociety.org/2016/03/24/ultragenyx-pharmaceutical-sponsor-fshd-drug-development-project/) - Ultragenyx Pharmaceutical Inc., a biopharmaceutical company focused on the development of novel products for rare and ultra-rare diseases, and Saint Louis University's (SLU) Center for World Health and Medicine, announced that they have entered into three-year agreement to collaborate on the development of small molecule therapeutics for the potential treatment of Facioscapulohumeral Muscular Dystrophy (FSHD). The SLU team is
- [FSH Society newly awarded grants](https://www.fshdsociety.org/2016/03/24/fsh-society-newly-awarded-grants/) - The FSH Society has awarded $598,242 in research funds from its August 2015 grant submission cycle. Details of the funded projects can be viewed on this page. These proposals received highest marks from our Scientific Advisory Board. They include projects to advance a gene therapy method, study how the DUX4 gene (which causes FSHD) can damage muscles, identify
- [Third Annual Songs in the Key of Steven Blier](https://www.fshdsociety.org/2016/04/25/save-date-third-annual-songs-key-steven-blier/) - June 24, 2016, 6:00 PM - REGISTER NOW! Grace Cathedral, San Francisco Please join the extraordinary pianist Steven Blier and baritone Theo Hoffman for a transcendent evening in one of San Francisco’s iconic spaces: Grace Cathedral. You will be treated to a world-class musical performance under the witty and erudite direction of maestro Blier in an
- [Thank you, Spencer and Carden!](https://www.fshdsociety.org/2016/06/10/thank-spencer-carden/) - This week, Spencer Wyckoff competed on NBC’s “American Ninja Warrior” to raise awareness and funds for the FSH Society. Before taking the course, Spencer and his sister, Carden, described their family’s experience with FSHD. If you missed it, watch a recap of their inspirational story here. Carden created this video to thank their supporters and to
- [Celebrate World FSHD Day on June 20](https://www.fshdsociety.org/2016/06/14/celebrate-world-fshd-day-june-20/) - On June 20, we will celebrate the inaugural World FSHD Day to raise awareness for Facioscapulohumeral muscular dystrophy. Participants from across the globe, including individuals with FSHD, their families and supporters, and advocacy organizations, will come together in various activities to raise awareness for FSHD, one of the most prevalent forms of muscular dystrophy. On World
- [FSH Society Awards Grant to Establish Clinical Trial Research Network for FSHD](https://www.fshdsociety.org/2016/06/14/fsh-society-awards-grant-establish-clinical-trial-research-network-fshd/) - (PRWEB) JUNE 14, 2016 The FSH Society, a nonprofit, patient-driven organization that supports research and education for individuals with facioscapulohumeral muscular dystrophy (FSHD) and their families, today announced that it has awarded a $121,000 grant to co-principal investigators Jeffrey Statland, MD of the University of Kansas Medical Center, and Rabi Tawil, MD of the University
- [FSH Watch 2016 Issue 1 is out!](https://www.fshdsociety.org/2016/06/29/fsh-watch-2016-issue-1/) - Hot off the press, our current issue of FSH Watch keeps you up to date on important advances in research and medical care, as well as news about your Society, regional meetings, and upcoming events. Individuals living with FSHD share their thoughts about "coming out" and their responsibilities as advocates and research participants. Highlights include: Human FSHD
- [FSH Society commits over $1.38 million to research in 2016](https://www.fshdsociety.org/2016/08/29/fsh-society-commits-1-36-million-research-2016/) - Grants approved from February 2016 cycle set new record. The FSH Society has committed $648,774 in funding to five research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants bring the total research funding committed by the FSH Society in 2016 to $1,383,692, a 44
- [San Diego members get a stem cell tutorial](https://www.fshdsociety.org/2016/09/01/san-diego-members-get-stem-cell-tutorial/) - By Amy Bekier, San Diego, California On July 30, 2016, twenty-five FSHD patients, family and scientists assembled at Genea Biocells in La Jolla, California, to hear presentations by senior scientists Amanda Rickard and Anabel de la Garza. Their work is aimed at identifying future treatments for FSHD patients. The company’s website states that “Genea Biocells developed
- [Carden and Spencer Wyckoff to Set off on Piggyback Adventure through the Appalachian Trail](https://www.fshdsociety.org/2016/10/18/carden-spencer-wyckoff-set-off-piggyback-adventure-appalachian-trail/) - FSH Society Ambassador Carden Wyckoff and her brother Spencer are at it again! This time, they will be traveling 79-miles through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD. Throughout the hike, sponsored by Vestigo, Spencer will be carrying his sister Carden on his back using a specially
- [The FSH Watch 2016 Issue 2 is out!](https://www.fshdsociety.org/2016/10/21/fsh-watch-2016-issue-2-2/) - Our newest issue of the FSH newsletter is here! We’re so excited to share new scientific updates, patient stories, and the latest FSH Society initiatives. Highlights include: The creation of a Clinical Trial Research Network of universities, designed to speed the search for treatments for FSH (cover story); Patient’s brother competes in American Ninja Warrior
- [aTyr Pharma Receives FDA Fast Track Designation for Resolaris™](https://www.fshdsociety.org/2016/10/24/atyr-pharma-receives-fda-fast-track-designation-resolaris/) - -- First Reported Fast Track Designation for a FSHD Treatment -- SAN DIEGO, Oct. 24, 2016 /PRNewswire/ -- aTyr Pharma, Inc. (Nasdaq: LIFE), a biotherapeutics company engaged in the discovery and development of Physiocrine-based therapeutics to address severe, rare diseases, today announced that its product candidate Resolaris™ was granted Fast Track designation by the US Food
- [What Would You Like to #AskTheResearcher?](https://www.fshdsociety.org/2016/10/25/what-would-you-like-to-asktheresearcher/) - For the past 25 years, countless researchers have dedicated their time and energy striving to find a cure for FSHD. Thanks to the work of researchers like Dr. Jeffrey Statland, Dr. Rabi Tawil and Peter Jones, PhD (just to name a few!), we are a strong community filled with some of the brightest minds in
- [Ghostly Gala posts an awesome trailer](https://www.fshdsociety.org/2016/10/25/ghostly-gala-posts-awesome-trailer/) - Hot off the press! Our celebrity champion Max Adler has confirmed that he is attending. Comedian Wendy Liebman will host the evening. Get out your powdered wigs, unitards, and sparkle! Get your tickets! Register here. Please applaud the Ghostly Gala organizers for their hard work with a donation in their honor. Just. Click. Here.
- [We Want You to #ShareYourVictory!](https://www.fshdsociety.org/2016/10/26/we-want-you-to-shareyourvictory/) - At this year’s Inaugural CureFSHD National Gala on November 11, we look to celebrate not just the victories of our tireless researchers and fearless ambassadors, but also the small (yet no less important) accomplishments that individuals with FSHD experience every day. To celebrate the strength of our Society, please share your own personal victory with
- [Carden and Spencer Wyckoff Share Their Appalachian Adventure with WSB-TV Atlanta!](https://www.fshdsociety.org/2016/11/28/carden-spencer-wyckoff-share-appalachian-adventure-wsb-tv-atlanta/) - Last month, FSH Society Ambassadors Carden and Spencer Wyckoff hiked through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD. You can now watch their experience on WSB-TV Atlanta! In total, 25 family members, friends and supporters joined the duo on the 82-mile hike. Although the trek was long,
- [Acceleron's ACE-083 clinical trial is now open](https://www.fshdsociety.org/2016/12/05/accelerons-ace-083-clinical-trial-now-open/) - Cambridge, Massachusetts-based Acceleron Pharma, Inc., is now recruiting adults with FSH muscular dystrophy for a Phase 2 clinical trial of ACE-083. The initial trial site is located in St. Louis, Missouri. Additional sites across the U.S. are expected to begin recruiting soon. ACE‐083 is an investigational drug that inhibits selected proteins in the transforming growth
- [2016 FSHD Patient Connect Conference](https://www.fshdsociety.org/2016/12/06/2016-fshd-patient-connect-conference-2/) - The FSH Society’s 2016 Patient Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM) at the Westin Copley Place Hotel in Boston, Massachusetts. The conference brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. Download the
- [Participate in our survey on the impact of FSH muscular dystrophy](https://www.fshdsociety.org/2016/12/10/participate-survey-impact-fsh-muscular-dystrophy/) - We are excited to share with you a survey containing questions to help researchers better understand the impact of FSHD on patients and caregivers. The survey was developed collaboratively by Acceleron Pharma, aTyr Pharma, the FSH Society, and Jeffrey Statland, MD PhD. Topics include the use of assistive devices, exercise, specific muscle weaknesses, and willingness
- [FSH Watch Issue 3 is out!](https://www.fshdsociety.org/2016/12/16/fsh-watch-issue-3-2016/) - We are excited to announce the arrival of our newest edition of the FSH Watch. This Watch not only shares patient stories and information on coping with FSHD, but also contains updates on the research projects being funded by the FSH Society with your support! We are happy to share all of this going into
- [Global FSHD Registry Workshop](https://www.fshdsociety.org/2017/01/12/global-fshd-registry-workshop/) - International workshop in November reaches consensus on a global FSHD patient registry. If you are an individual with FSHD, or a family member, you may have been asked to join a patient registry. Perhaps you are wondering what a registry is? Disease registries are an essential tool for advancing research to understand a disease, improve patient
- [Meet three remarkable individuals with FSH muscular dystrophy](https://www.fshdsociety.org/2017/01/16/meet-three-remarkable-individuals-fshd/) - Meet Steven Blier, Sarah Geissler, and Chris Stenmon, three remarkable individuals with FSH muscular dystrophy who spoke about their dreams and personal challenges at the 2016 CureFSHD Gala. Interviewed by WBUR Morning Edition host Bob Oakes.
- [Consensus Reached to Move Forward with Formation of International Global FSHD Patient Registry](https://www.fshdsociety.org/2017/02/22/consensus-reached-move-forward-formation-international-global-fshd-patient-registry/) - Newly Formed Facioscapulohumeral Muscular Dystrophy Consortium Aims to Consolidate More than 13 Patient Registries in Effort to Accelerate Research on Rare Disease BOSTON – (February 22, 2017) – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced that with the FSHD Champions, an international alliance of FSHD patient advocacy organizations,
- [FSH Society's first Open House!](https://www.fshdsociety.org/2017/03/01/fsh-societys-first-open-house/) - The FSH Society is looking forward to seeing you! If you live in the New England area or even just happen to be visiting, we’d love to have you stop by our office on March 7, 2017, between 5 and 7pm for our Spring Open House! We’re very excited to show you our new
- [Johns Hopkins Studies](https://www.fshdsociety.org/2017/03/06/johns-hopkins-studies/) - Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies! Volunteering for studies like this helps provide researchers with the information they need to provide better treatments, understand the mechanisms of the disease, and search for a cure. For Family Members (no travel necessary!): The Johns Hopkins Hospital and the Kennedy Krieger
- [Q &A on potential use of BET inhibitors for FSHD](https://www.fshdsociety.org/2017/03/15/q-potential-use-bet-inhibitors-fshd/) - On February 13, Canadian biotech, Reserverlogix announced that facioscapulohumeral muscular dystrophy (FSHD) is one of two new indications it is pursuing involving its lead drug, apabetalone (RVX-208) which inhibits bromodomain and extra-terminal (BET) epigenetic readers. It mentioned research conducted at Saint Louis University demonstrating apabetalone mediated modulation of important targets in FSHD. The FSH Society
- [Team FSHD Cycling eyes epic race in June 2017](https://www.fshdsociety.org/2017/03/17/team-fshd-cycling-eyes-epic-race-june-2017/) - by June Kinoshita During the month of June of this year, the FSHD community will enjoy the thrill of having one of its own lead an eight-person team in the Race Across America (RAAM), a bicycle race from Oceanside, California, to Annapolis, Maryland. The team, recruited by George Pollock, plans to compete in the Open
- [FSH Society Supporters Dr. Michael Kyba and Marge Brchan Share Their Story With FOX 9 Minneapolis](https://www.fshdsociety.org/2017/03/29/fsh-society-supporters-dr-michael-kyba-marge-brchan-share-story-fox-9-minneapolis/) - Over the weekend, supporters of the FSH Society Dr. Michael Kyba of the University of Minnesota and patient Marge Brchan shared their amazing story with Leah Beno of FOX 9 Minneapolis. To watch the broadcast video clip, click here. After being diagnosed at 19 years old, Brchan has battled the effects of FSHD most of her life.
- [The FSH Society Spring Watch is out!](https://www.fshdsociety.org/2017/03/31/fsh-society-spring-watch/) - The FSH Society is pleased to announce their Watch Newsletter for Spring 2017. Featured in the Watch are articles about Highlights from the FSH Society's 2016 International Research Conference (page 1) Young Hollywood comes out in support of the Los Angeles Ghostly Gala (cover story) New FSHD family cell lines being released for research after 30
- [FSHD patient survey results presented at MDA Conference](https://www.fshdsociety.org/2017/03/31/fshd-patient-survey-results-presented-mda-conference/) - At the Muscular Dystrophy Association’s biennial scientific conference, held in Washington, DC, on March 19-22, 2017, researchers from Acceleron Pharma presented a poster about the most prominent symptoms and daily life impact of FSH muscular dystrophy, as reported by patients and caregivers. The report was based on results from a survey developed by Acceleron in
- [FSH Society Awards $541,133 in Funding for FSH Muscular Dystrophy Research](https://www.fshdsociety.org/2017/04/05/fsh-society-awards-541133-funding-fsh-muscular-dystrophy-research/) - Boston-based Non-profit Awards New Grants to Facilitate Search for a Cure BOSTON – April 5, 2017 – Today the FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced it has committed $541,133 in funding to five research projects that aim to break new ground in the search for a treatment and cure
- [Intriguing research on tyrosine kinase inhibition as a potential therapy for FSHD: Sunitinib rescues muscle cells' ability to develop](https://www.fshdsociety.org/2017/04/19/intriguing-research-tyrosine-kinase-inhibition-potential-therapy-fshd-sunitinib-rescues-muscle-cells-ability-develop/) - Written by Jim Albert Eldersburg, Maryland A cancer drug has been shown to potentially rescue some of the damaging effects of DUX4, the gene implicated in FSH muscular dystrophy. The laboratory of Peter Zammit, PhD, Randall Division of Cell and Molecular Biophysics, King’s College London, United Kingdom, in collaboration with Robert Knight, PhD, of
- [Help us promote World FSHD Day with a selfie video!](https://www.fshdsociety.org/2017/04/26/help-us-promote-world-fshd-day-with-a-selfie-video/) - JUNE 20th is WORLD FSHD DAY! Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year's World FSHD Day awareness campaign. RaisingAware Orange is the international color of World FSHD Day - so we're using an orange slice to spread the word. All you need to do is
- [aTyr Pharma releases results of early-onset FSHD trial](https://www.fshdsociety.org/2017/04/26/atyr-pharma-releases-results-early-onset-fshd-trial/) - SAN DIEGO, April 24, 2017 (GLOBE NEWSWIRE) -- aTyr Pharma, Inc. (Nasdaq:LIFE), a biotherapeutics company engaged in the discovery and development of Physiocrine-based therapeutics to address severe, rare diseases, today announced promising clinical results from its Phase 1b/2 003 trial assessing the safety and potential activity of Resolaris™ in patients with early onset facioscapulohumeral muscular
- [FSH Society grant award for myostatin study](https://www.fshdsociety.org/2017/04/28/fsh-society-grant-award-myostatin-study/) - In April, the FSH Society awarded Julie Dumonceaux PhD, or University College London, Institute of Child Health. a grant of $9,659.43 for one year for a project aimed at better understanding patients' response to a class of drugs called myostatin inhibitors. These drugs, such as Acceleron's ACE-083 which is currently in a clinical trial in FSH
- [Into the Light Wins Three Awards at Best Shorts Film Competition](https://www.fshdsociety.org/2017/05/02/light-wins-three-awards-best-shorts-film-competition/) - The FSH Society is proud and honored to have been recognized for 3 awards from the 6th Annual Best Shorts Film Competition for our short film documentary, Into the Light. Honors were presented to Directors Jonathan Williams and Paula Aguilera, and included: Award of Merit: Disability Issues Award of Recognition: Documentary Short Award of Merit:
- [My Boston Adventure: traveling solo with my wheelchair](https://www.fshdsociety.org/2017/05/04/boston-adventure-traveling-solo-wheelchair/) - Written by Trisha Lynn Sprayberry Las Vegas, Nevada My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first
- [Team Fundraising for World FSHD Day](https://www.fshdsociety.org/2017/05/16/team-fundraising-world-fshd-day/) - FSH Society member Mia Archuleta is asking you to help our community raise awareness and funds by reaching out to your network. Studies show that asking friends and family to donate will multiply your own donations by seven-fold!! Please read on to learn about our team fundraising campaign! NEW: Read this great article about George Pollock
- [The Moving Story of George Pollock's quest to Race Across America](https://www.fshdsociety.org/2017/05/24/george-pollocks-raam-perspectives/) - Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school's magazine. In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of
- [From our CEO, a call to FSHD researchers](https://www.fshdsociety.org/2017/05/25/ceo-call-fshd-researchers/) - Dear Research Colleagues, As you know, the FSH Society constantly encourages the National Institutes of Health (NIH) to increase the number of grants and the number of dollars it funds on one of the most common forms of muscular dystrophy--facioscapulohumeral muscular dystrophy (FSHD)--while urging the FSHD research community to help the NIH to achieve higher levels
- [Make an Impact This World FSHD Day With Our Orange Slice Selfie Campaign](https://www.fshdsociety.org/2017/05/26/make-impact-world-fshd-day-orange-slice-selfie-campaign/) - The FSH Society is excited to celebrate the Second Annual World FSHD Day and join the global effort to raise awareness to FSHD this June 20th. To build upon last year’s success, we’re calling upon you—our biggest supporters—to spread the word! We ask that you join us along with members of FSHD Champions in participating
- [FSH Society Talk Radio - A chat with Chris Carrino, voice of the Brooklyn Nets](https://www.fshdsociety.org/2017/05/30/fsh-society-talk-radio-chat-chris-carrino-voice-brooklyn-nets/) - Wednesday, May 31, 2017. 10:00 pm EST / 9:00 pm CST. LISTEN HERE! Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in
- [New documentary tells one family's story about FSH muscular dystrophy](https://www.fshdsociety.org/2017/06/22/new-documentary-tells-one-familys-story-fsh-muscular-dystrophy/) - https://www.youtube.com/watch?v=VSTgoxlMvUw FSH Society ambassador Lexi Pappas has just completed her first film documentary, based on her family's multigenerational experience living with facioscapulohumeral muscular dystrophy. We learn how FSHD affects individual members of her family in different ways. The documentary is a powerful, personal "coming out story" about Lexi's courageous decision to open up about her condition and why it
- [Why I donated tissue](https://www.fshdsociety.org/2017/07/18/why-i-donated-tissue-2/) - by MAUREEN EYE Centerport, New York In November of 2016, I underwent scapula fusion surgery in Baltimore, Maryland. During that surgery I had the privilege to donate muscle tissue for FSHD research. The donation itself was relatively simple. The paperwork prior to the surgery was minimal and mainly taken care of by the doctor’s office. The
- [FSH Society Talk Radio with Dr. Charis Himeda](https://www.fshdsociety.org/2017/07/20/fsh-society-talk-radio-dr-charis-himeda/) - UPDATE: Our show has been rescheduled for Wednesday, August 30, 2017, 9:00 pm EST / 8:00 CST. Visit us here for updates. Listen live or via podcast HERE! Our guest is Charis L. Himeda, PhD, Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the
- [FSH Society awards over a half million dollars for new research](https://www.fshdsociety.org/2017/07/20/fsh-society-awards-half-million-dollars-new-research/) - The FSH Society, a world leader in combating facioscapulohumeral muscular dystrophy (FSHD), announced this spring that it has committed $550,792 in funding to six research projects that aim to break new ground in the search for a treatment and cure for FSHD. These grants follow the Society’s record-breaking $1.36 million awarded for total research funding
- [Ohio FSHD Family Day Conference](https://www.fshdsociety.org/2017/07/21/ohio-fshd-family-day-conference/) - Strengthening our network in the Midwest The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research
- [Clinical Trial Research Network receives major award from NIH](https://www.fshdsociety.org/2017/07/22/clinical-trial-research-network-receives-major-award-nih/) - by June Kinoshita The FSHD Clinical Trial Research Network (CTRN), which was launched last year with a $121,000 grant from the FSH Society, has received a UO1 award from the National Institutes of Health. The project will receive $469,642 for the first year. Additional funds, up to a total of nearly $2.7 million, will be
- [A Segway for mobility](https://www.fshdsociety.org/2017/07/23/a-segway-for-mobility/) - by TOM THOMPSON, Charlotte, North Carolina The first time I ever saw a Segway I immediately recognized it as something that could possibly help my mobility. My FSHD had progressed to the point where I was having difficulty walking. At my first opportunity I went to a Segway dealership to try one. It was an amazing
- [Relive Team FSHD Cycling's Race Across America!](https://www.fshdsociety.org/2017/08/08/relive-team-fshd-cyclings-race-across-america/) - Check out this amazing video of Team FSHD Cycling's epic race this summer. Huge thank you to Emily Pollock for creating this priceless documentary. Warning: Have a box of tissues handy!
- [Hot off the press: FSH Watch](https://www.fshdsociety.org/2017/08/11/hot-off-press-fsh-watch/) - The latest issue of FSH Watch is here! Highlights: Clinical Trial Research Network receives major NIH award World FSHD Day 2017 FSHD Family Day Conference in Columbus, Ohio Bone health and FSHD FSH Society's congressional testimony Why I donated tissue Ask the physical therapist (part 3) How can I use a planned gift to support
- [Gimpy girl goes birding](https://www.fshdsociety.org/2017/08/14/gimpy-girl-goes-birding/) - A 2017 mid-Atlantic, physically accessible birding "Big Year" by DEB CALHOUN, Frederick County, Maryland Midsummer last year, I became determined to fight back against FSH muscular dystrophy. Most of my friends and family know I have FSHD. This isn’t a new diagnosis, and living fully with this disease has kept me determined and also sensitive to the
- [FSH Society awards over $600K for new research](https://www.fshdsociety.org/2017/08/20/fsh-society-awards-600k-new-research/) - The FSH Society has awarded grants totaling $616,467 to seven research projects submitted for the February 2017 grant cycle. This brings total research funding by the Society for 2017 to $1,167,260. To learn more about the projects that are receiving this new support, visit Grants We have Funded.
- [FSH Society Talk Radio: Interview with Dr. Charis Himeda](https://www.fshdsociety.org/2017/08/29/fsh-society-talk-radio-interview-dr-charis-himeda/) - Wednesday August 30, 2017 9:00 pm EST/8:00 pm CST Tune in live or listen to the post-show recorded podcast HERE. We're excited to welcome Charis L. Himeda, PhD, Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle
- [Radio Show - Steven Blier, musician extraordinaire](https://www.fshdsociety.org/2017/09/15/radio-show-steven-blier-musician-extraordinaire/) - LISTEN LIVE ON WEDNESDAY, SEPTEMBER 27, 2017, HERE. A podcast of the interview will be available at this link. This month's radio show guest is Steven Blier, a pianist and go-to coach for some of the world's most celebrated singers. Joining us also will be George Pollock, to tell us about his experiences riding in
- [FSH Radio Show-Featuring New CEO Mark Stone](https://www.fshdsociety.org/2017/09/29/fsh-radio-show-featuring-new-ceo-mark-stone-2/) - Check out our upcoming FSH Society Radio podcast with Mark Stone, the FSH Society’s new Chief Executive Officer on October 25, 2017 at 9:00 pm EST. Tune in live HERE. Mark Stone began his tenure as CEO and President of the FSH Society in September. Stone is a leading executive in health care-related non-profit organizations,
- [FSHD Family Day Conference in Los Angeles](https://www.fshdsociety.org/2017/10/01/fshd-family-day-conference-los-angeles/) - The FSH Society's Los Angeles FSHD Family Conference will be held on October 21, 2018, at Santa Monica College's Bundy Campus. Join patients, families, and top researchers and clinicians for an afternoon of intensive learning, socializing, and networking. Hear from expert clinicians about best practices in the care of FSH muscular dystrophy health issues, including
- [A new DUX4 mouse with muscle disease](https://www.fshdsociety.org/2017/10/24/new-dux4-mouse-muscle-disease/) - The FSH muscular dystrophy scientific literature finally has a publication describing a genetic mouse model that develops skeletal muscle disease. This work comes via the laboratory of Michael Kyba, PhD, at the University of Minnesota’s Lillehei Heart Institute. This murine model, called iDUX4 pA, has a number of compelling similarities to the human disease. Ever
- [FSH Society Talk Radio - Max Adler is our November guest!](https://www.fshdsociety.org/2017/11/08/fsh-society-talk-radio-max-adler-november-guest/) - Wednesday November 29, 2017, 9:00 pm EST/8:00 pm CST. Tune in live or listen to the post-show recorded podcast HERE. We are thrilled to welcome actor Max Adler, FSH Society honorary board member and advocate. The 31-year-old film and television actor first achieved national recognition for his role as Dave Karofsky on the hit television series
- [With a Sense of Urgency](https://www.fshdsociety.org/2017/11/14/with-a-sense-of-urgency/) - https://www.youtube.com/watch?v=Fxvwob5_bkU When Katie Ruekert reached out to the FSH Society, she discovered that by connecting with others with facioscapulohumeral muscular dystrophy (FSHD), she gained a new sense of purpose. Her husband Tom says, “She’s taken a lot of that fear and depression and turned it into something really good.” After months of thinking about what
- [Nearly $1.2 million committed in 2017 to FSH muscular dystrophy research](https://www.fshdsociety.org/2017/11/17/nearly-1-2-million-committed-2017-fsh-muscular-dystrophy-research/) - The FSH Society has awarded grants totaling $616,467 to seven research projects submitted during the February 2017 grant cycle. This brings the Society’s total new research commitments to $1,167,260 for the year. Reviewed by the Society’s world-class Scientific Advisory Board, these cutting-edge projects will help to accelerate the development of treatments. Michael Kyba’s project will carry
- [A comedian's worst nightmare](https://www.fshdsociety.org/2017/11/25/comedians-worst-nightmare/) - https://www.youtube.com/watch?v=i8AhLsEFNGU Watch what happens with this famous Dutch comedian performs before an audience of people with facioscapulohumeral muscular dystrophy. Did you notice confidence and determination of these patients and families, boldly demanding recognition and action on FSHD? We know the direction we need to go. That's why you can donate with confidence to the FSH
- [Charity Navigator rates FSH Society as "Exceptional"](https://www.fshdsociety.org/2017/12/01/charity-navigator-rates-fsh-society-exceptional/) - The FSH Society has earned its tenth consecutive 4-star Charity Navigator rating! According to Michael Thatcher, President & CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 10 consecutive 4-star evaluations, indicating that FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH
- [Last 2017 Watch is out!](https://www.fshdsociety.org/2017/12/04/last-2017-watch/) - Our last Watch issue of 2017 is available now! Highlights include: Team FSHD Cycling participating in the 36th Race Across America An introduction to new FSH Society CEO, Mark Stone San Francisco FSHD Family Day Human growth hormone and testosterone as a potential treatment for FSHD A new genetic mouse model for testing FSHD treatments
- [Duchenne/Becker and FSH Muscular Dystrophies Receive ICD-10 Codes](https://www.fshdsociety.org/2017/12/07/duchennebecker-fsh-muscular-dystrophies-receive-icd-10-codes/) - Parent Project Muscular Dystrophy, FSH Society Lead Effort to Obtain Critical Diagnostic Classification Standard HACKENSACK, N.J., Dec. 7, 2017 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD), along with collaborators the FSH Society and the Foundation to Eradicate Duchenne (FED), are pleased to announce that the nominations to create more specific ICD-10 codes for Duchenne/Becker muscular
- [FSH Society Talk Radio, On-air Support Group](https://www.fshdsociety.org/2017/12/21/fsh-society-talk-radio-air-support-group/) - Join us on Wednesday, December 27, at 9:00 pm EST / 8:00 pm CST for our live radio show. Tune in HERE. On this episode, the featured guest is you, the listener! Call our host Tim Hollenback at 949-270-5953 to ask questions and tell us about you. We’ll be joined by FSHD ambassadors Carden Wyckoff and
- [Acceleron Announces Preliminary Results from Part 1 of the ACE-083 Phase 2 Trial in Patients with Facioscapulohumeral Dystrophy](https://www.fshdsociety.org/2018/01/08/acceleron-announces-preliminary-results-part-1-ace-083-phase-2-trial-patients-facioscapulohumeral-dystrophy/) - We are sharing the following press release from Acceleron Pharma, Inc., regarding the progress of their Phase 2 clinical trial of ACE-083. The FSH Society collaborates with Acceleron to help the company understand patients' symptoms, motivations, desired outcomes, etc. - Mean total muscle volume increases of over 12% in the tibialis anterior and biceps brachii
- [FSH Society Talk Radio to interview authors of "I'll Push You"](https://www.fshdsociety.org/2018/01/22/fsh-society-talk-radio-interview-authors-ill-push/) - Listen live on BlogTalkRadio on Wednesday, January 31, at 9:00 pm EST, or listen and ask questions on the air by calling (949) 270-5953. On our next episode of the FSH Society Talk Radio show, we welcome Justin Skeecuck and Patrick Gray from the book and film "I'll Push You." Over the past 20-plus years, a
- [Win a day of self-care with Hollywood star Debby Ryan!](https://www.fshdsociety.org/2018/01/23/win-day-self-care-hollywood-star-debby-ryan/) - We’re excited to announce that YOU could join Debby Ryan for a self-care day in Los Angeles! Flights and hotel are included, plus donations to win benefit our work here at the FSH Society! You can buy chances to win this once-in-a-lifetime adventure for you and a lucky friend here. Debby Ryan is one of
- [FSH Society Talk Radio with Dr. Tahseen Mozaffar](https://www.fshdsociety.org/2018/02/12/fsh-society-talk-radio-dr-tahseen-mozaffar/) - Join us on Wednesday, February 28, 2018, at 9:00 pm EST. Listen live on BlogTalkRadio, or listen and ask questions on the air by calling (949) 270-5953. On this episode of FSH Society Talk Radio, we welcome Tahseen Mozaffar MD. Dr. Mozaffar is director of the MDA ALS Neuromuscular Center at the University of California Irvine Medical Center. As a nationally recognized
- [FSH Society awards $690,894 in new research grants](https://www.fshdsociety.org/2018/02/14/fsh-society-awards-690894-new-research-grants/) - A drug that helps muscles grow and regenerate. Molecules that occur naturally in our cells to repress DUX4, the “toxic gene” thought to cause FSHD. A deeper dive into why FSHD muscle may have trouble regenerating. These are some of the exciting ideas that the FSH Society has funded in its latest round of grant
- [Rare Disease Day Rare Talent Challenge](https://www.fshdsociety.org/2018/02/21/rare-disease-day-rare-talent-challenge/) - This year, to celebrate Rare Disease Day, taking place on Wednesday, February 28, we will be hosting a viral photo and video challenge! Share your rare talents and help us bring the FSH Society into the larger conversation around rare diseases. Here’s how it works: Decide on a rare talent–whether you can sing Puccini, juggle
- [$133,254 awarded to FSHD Clinical Trials Research Network](https://www.fshdsociety.org/2018/02/21/133254-awarded-fshd-clinical-trials-research-network/) - The FSH Society has awarded a grant for a second year of support for the FSHD Clinical Trials Research Network (CTRN), through the coordinating center based at the University of Kansas Medical Center, Fairway, Kansas. In awarding the grant, the Society notes the value of having a standing, research and trial-ready infrastructure for FSH muscular
- [How the FSH Society drives FSHD therapy development](https://www.fshdsociety.org/2018/03/01/fsh-society-drives-fshd-therapy-development/) - This infographic from our FY2017 Donor Report illustrates how the FSH Society is involved at every stage of the treatment development process. We invest strategically at key stages along the entire trajectory. We invest where we see the need, to move us faster and most efficiently—from fundamental research on disease mechanisms and drug targets all
- [2018 FSHD Connect preliminary agenda](https://www.fshdsociety.org/2018/03/08/2018-fshd-connect-preliminary-agenda/) - We're excited to share with you the preliminary agenda for our 2018 FSHD Connect conference, where a coalition of patient and families, top researchers and clinicians, and advocates will gather to learn about the state of the field, advances in treatment research, and living well with FSHD. Back by popular demand to give her "FSHD
- [FSH Society Talk Radio Live Support Group!](https://www.fshdsociety.org/2018/03/15/fsh-society-talk-radio-live-support-group/) - Join us on March 28th, 9:00 PM EST / 8:00 PM CST for a live, on-air support group session with the regulars at Connecticut Connections, the FSH Society’s member group based out of Connecticut. You can stream the show on BlogTalkRadio or listen and ask questions on the air by calling (949) 270-5953. For the past few
- [Project 2025](https://www.fshdsociety.org/2018/03/16/project-2025/) - Dear Friends, At the FSH Society, our moonshot is to get to a treatment for FSHD―an intervention that will slow or halt the muscle deterioration. We have set a target year, 2025, a date our scientific advisors agree is realistic to get the first disease-modifying drug to our families. It is an ambitious goal, but
- [Webinar: Psychological interventions to improve well-being in muscle diseases](https://www.fshdsociety.org/2018/03/26/webinar-psychological-interventions-to-improve-well-being-in-muscle-diseases/) - https://www.youtube.com/watch?v=s67L70Acul4 Note: The video will be posted only until May 31, 2018. Download Chris Graham's Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris Graham, PhD, DPsychol, describes some of the findings from studies looking at what coping methods seem to be beneficial for well-being. He then describes some
- [FSHD Connect pre-conference workshop: A Mindful Way through FSHD](https://www.fshdsociety.org/2018/03/29/fshd-connect-pre-conference-workshop-a-mindful-way-through-fshd/) - Flamingo Las Vegas, Carson City ballrooom Saturday, June 9, 2018 9:30-11:00 AM PST An experiential workshop for patients, family members, and friends for managing stress, illness, and disability. This is being offered as a pre-conference activity of the 2018 FSHD Connect. If you wish to attend, RSVP to Robyn O'Leary at robyn.oleary@fshdsociety.org. Thank you! You
- [Talk Radio: Mindfulness with Dr. Jennifer Egert](https://www.fshdsociety.org/2018/04/12/talk-radio-mindfulness-with-dr-jennifer-egert/) - Join us on April 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with stress and anxiety. You can stream the show on BlogTalkRadio or listen and
- [Living with FSHD - My journey to a diagnosis](https://www.fshdsociety.org/2018/04/22/living-with-fshd-my-journey-to-a-diagnosis/) - by Angela Davis, Marquette, Michigan I first started noticing something was a bit off when I was around age 15. People often asked if I hurt my leg or knee. They said it looked like I was walking with a limp. I always said, “No, I am fine,” and brushed it off. After a while,
- [Walking & Rolling Toward a Cure!](https://www.fshdsociety.org/2018/04/25/walking-rolling-toward-a-cure/) - We are excited to announce the launch of our first nationally branded event, the Walk & Roll to Cure FSHD. This signature fundraising event will take place in September and early October 2018 in several locations around the country, with additional sites being added in 2019. FSH Society Walk & Roll fundraising events
- [Acceleron Receives FDA Fast Track Designation for its FSHD drug](https://www.fshdsociety.org/2018/05/01/acceleron-receives-fda-fast-track-designation-for-its-fshd-drug/) - The Massachusetts-based biotech, Acceleron Pharma, issued a press release this morning with some encouraging news for FSH muscular dystrophy patients about its experimental drug, ACE-083 (see related story). Here is what it says: CAMBRIDGE, Mass.--(BUSINESS WIRE)--Acceleron Pharma Inc. (NASDAQ:XLRN), a leading biopharmaceutical company in the discovery and development of TGF-beta therapeutics to treat serious and
- [The Watch has landed!](https://www.fshdsociety.org/2018/05/02/the-watch-has-landed/) - The Spring edition of FSH Watch is here! Read on to catch up on all the happenings so far in 2018: This issue's highlights include: -Jim Chin elected Chair of the Board -Announcing: Walk & Roll to Cure FSHD! -The DUX gene may have a starring role in biology -IRC & FSHD Connect Conferences coming
- [My journey from powerless to powerful](https://www.fshdsociety.org/2018/05/12/my-journey-from-powerless-to-powerful/) - by Dave Lukas, Lake In the Hills, Illinois Three years ago, my life was changed forever. Three years ago, I walked out of a doctor's office, got in my car and sobbed. Three years ago, my image of what my future looked like was shattered. Today, my life is still changed forever. Today, I leave
- [FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018](https://www.fshdsociety.org/2018/06/01/fsh-society-announces-third-annual-world-fshd-day-taking-place-on-june-20-2018/) - https://www.youtube.com/watch?v=2GOgTBvu-GY The FSH Society is excited to celebrate the Third Annual World FSHD Day and join the global effort to raise awareness to FSHD on June 20, 2018. To build on our successes of the past two years, we’re calling upon you—our biggest supporters—to spread the word! We ask that you join us along with
- [Activate a fundraiser for World FSHD Day!](https://www.fshdsociety.org/2018/06/03/activate-a-fundraiser-for-world-fshd-day/) - YOU are the driving force that enables the FSH Society to support & empower families, and to fund groundbreaking research to find treatments and a cure! Celebrate World FSHD Day (June 20th) and discover the incredible power of networking by starting your own fundraiser using our peer-to-peer platform. Sending out appeals to friends and family can
- [Talk Radio: From finance to fashion with Curt Calder](https://www.fshdsociety.org/2018/06/15/talk-radio-from-finance-to-fashion-with-curt-calder/) - Join us on June 27th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Curt Calder, co-founder of AnsonCalder, a leather accessories company that weds artisan materials and fine craftsmanship with minimalist, functional designs inspired by his experiences as a busy finance professional living with FSH muscular dystrophy. You can stream the show
- [2018 FSHD Connect videos!](https://www.fshdsociety.org/2018/06/29/2018-fshd-connect-conference-3/) - Our 2018 FSHD Connect conference was held at the Flamingo Las Vegas on June 9-10, 2018. The conference gathered together 400 patients, family members, researchers, physicians, and health experts for a day-and-a-half of intensive learning and community activism. Our meeting featured talks by thought leaders on the latest in scientific research and medical management of
- [Find your voice through FSH Society radio](https://www.fshdsociety.org/2018/07/09/find-your-voice-through-fsh-society-radio/) - https://www.youtube.com/watch?v=8FTy4NhnrpE With 14 episodes of our monthly FSH Society Radio show now under our belt, we hope many of you are not just listening, but also considering how this medium can give our community a greater voice. At the FSHD Connect conference, host Tim Hollenback issued a call to action to the FSHD community. The radio
- [Talk Radio: The FSH Society launches national chapter program](https://www.fshdsociety.org/2018/07/17/talk-radio-the-fsh-society-national-chapter-program/) - Join us on July 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Beth Johnston and Leigh Reynolds, the dynamic duo who are spearheading the FSH Society's national chapter program. Led by volunteers and supported by FSH Society staff, the Chapter Program is our greatest opportunity to fund more research,
- [Acceleron Receives FDA Orphan Drug Designation for ACE-083](https://www.fshdsociety.org/2018/07/18/acceleron-receives-fda-orphan-drug-designation-for-ace-083/) - From BusinessWire CAMBRIDGE, Mass.--(BUSINESS WIRE)--Acceleron Pharma Inc. (NASDAQ:XLRN), a leading biopharmaceutical company in the discovery and development of TGF-beta therapeutics to treat serious and rare diseases, today announced that the United States Food and Drug Administration (FDA) has granted orphan drug designation for ACE-083, the Company’s locally acting “Myostatin+” muscle agent, for the treatment of
- [Our new FSHD 101 video](https://www.fshdsociety.org/2018/07/20/our-new-fshd-101-video/) - https://www.youtube.com/watch?v=3bPOypDmPoc Our new video explains the basic facts about facioscapulohumeral muscular dystrophy--the symptoms, how it affects those who have it, how it is inherited, and how many people are affected. Watch it and share it to help educate others about FSH muscular dystrophy. Thank you to Taylor Toole for compiling this video. Image and video
- [Webinar with Doris Leung, MD PhD, on MRI insights into FSH muscular dystrophy](https://www.fshdsociety.org/2018/08/02/webinar-with-doris-leung-md-phd-on-mri-insights-into-fsh-muscular-dystrophy/) - https://www.youtube.com/watch?v=GfA9LiQB7OQ Here's the recording of our FSH Society webinar on August 1, 2018. Dr. Leung is a neurologist at Kennedy Krieger Institute Center for Genetic Muscle Disorders and an assistant professor in the Department of Neurology at the Johns Hopkins School of Medicine. She is the principal investigator of an ongoing research study using whole-body magnetic resonance
- [$1.2 Million MDA grant awarded to FSHD Clinical Trial Research Network](https://www.fshdsociety.org/2018/08/03/1-2-million-mda-grant-awarded-to-fshd-clinical-trial-research-network/) - When the FSH Society made its initial grant award in 2016 to help establish the nationwide FSHD Clinical Trial Research Network (CTRN), we expected the network would be able to bring in significant additional outside funding. We're delighted to report that the Muscular Dystrophy Association has now stepped up with a $1.2 million award over
- [Mid-Atlantic FSHD Family Day registration is open](https://www.fshdsociety.org/2018/08/06/mid-atlantic-fshd-family-day-registration-is-open/) - The preliminary agenda and registration are now available for our first Mid-Atlantic FSHD Family Day Conference. It will be held in Baltimore, MD. Co-organized with Kathryn Wagner, MD PhD, and her team at the Kennedy-Krieger Institute, this meeting will update you on research ongoing at KKI as well as from other leading FSHD centers. Experts
- [Spotlight: Skylar Conover](https://www.fshdsociety.org/2018/08/07/spotlight-skylar-conover/) - Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter [box] A message from Nicky about the Spotlight series: “Feeling connected to others living with FSHD has been a blessing to me these past 10 years, and now I want to share my amazing FSHer friends with you! This series will introduce you to incredible stories and people
- [FSH Society Launches Nationwide Signature Walk & Roll Event](https://www.fshdsociety.org/2018/08/08/fsh-society-launches-nationwide-signature-walk-roll-event/) - Today, The FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it has established its first-ever nationwide signature event, the Walk & Roll to Cure FSHD. Under the unified brand, supporters anywhere in the U.S. (and beyond) can organize a “walk & roll” event to advocate for public awareness and
- [The 2018 FSHD International Research Congress](https://www.fshdsociety.org/2018/08/16/the-2018-fshd-international-research-congress/) - The field has made astonishingly fast progress by Charis Himeda, PhD, University of Nevada, Reno Nearly 150 researchers, clinicians, patients, and industry partners convened at the FSH Society’s 2018 International Research Congress, held in Las Vegas on June 8-9, 2018. The workshop reflected the major focus of the field: building on key discoveries in recent years
- [2018 FSHD Connect Conference](https://www.fshdsociety.org/2018/08/18/2018-fshd-connect-conference-2/) - Informative and life changing by Ian Rys, Port St. John, Florida As a first-timer, I was very excited to attend the 2018 FSHD Connect Conference held in Las Vegas, Nevada, this year. As we boarded the plane for Las Vegas I noticed something I wasn’t expecting quite so soon—I was feeling waves of emotion that just
- [The latest issue of the Watch is here](https://www.fshdsociety.org/2018/08/20/the-latest-issue-of-the-watch-is-here/) - Click Here to read all the recent research and community updates! Highlights of this issue include: Reports from the International Research Congress & the Patient Connect Conference Profiles of our upcoming Walk & Roll fundraisers Calls to action: Clinical Trial Readiness study; StoryCorps contributions Inspiring stories from several of our members! Interested in contributing
- [Walk & Roll to Cure FSHD is coming next month!](https://www.fshdsociety.org/2018/08/27/walk-roll-to-cure-fshd-is-coming-next-month/) - by Beth Johnston and Leigh Reynolds, FSH Society Our first nationally branded event, the Walk & Roll to Cure FSHD, will take place in September and October 2018. This new, signature fundraising event is happening in five locations around the U.S., with additional sites being added in 2019. Find them here. Our five brave Walk &
- [Facio broadens portfolio of potential drug development candidates](https://www.fshdsociety.org/2018/08/30/facio-broadens-portfolio-of-potential-drug-development-candidates/) - Reposted from Facio Therapies, Leiden, The Netherlands – August 30, 2018 Facio Therapies announced today that it has selected a second series of potential candidates for FSHD drug development. This series encompasses a family of novel small-molecule compounds that repress DUX4 by engaging a molecular target that differs from the target of Facio’s first series
- [Gene editing takes big step forward in Duchenne dog model](https://www.fshdsociety.org/2018/08/31/gene-editing-takes-big-step-forward-in-duchenne-dog-model/) - Researchers at the University of Texas Southwestern Medical Center in Dallas announced that they have made a significant advance in demonstrating the possibility of using CRISPR gene editing technology as a therapy for Duchenne muscular dystrophy (DMD). The technology was designed to "patch" a mutation in the dystrophin gene, which is defective in DMD, and
- [Don’t let this diagnosis limit you](https://www.fshdsociety.org/2018/09/03/dont-let-this-diagnosis-limit-you/) - When one path ended, a new one opened up by Nelson Dronet, Sulphur, Louisiana I would like to take a moment to share my story in the hope that it reaches at least one person and helps him or her understand that a diagnosis of FSHD or any other neuromuscular disease can be transcended. Growing up,
- [Fulcrum Therapeutics raises $80 million in series B](https://www.fshdsociety.org/2018/09/05/fulcrum-therapeutics-raises-80-million-in-series-b/) - Here's some encouraging news about Fulcrum Therapeutics. The Cambridge, Massachusetts-based biotech that is developing a drug to treat Facioscapulohumeral muscular dystrophy has announced it has closed $80 million in series B financing. The company hopes to go public early next year, after filing papers with the FDA to begin human testing of its first drug,
- [FSH Society Talk Radio: Marketer, mom, and advocate Taylor Quigg](https://www.fshdsociety.org/2018/09/10/fsh-society-talk-radio-marketer-mom-and-advocate-taylor-quigg/) - Join us on September 26th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Taylor Quigg, a wife and mother of two who lives in the suburbs of Philadelphia. Taylor was diagnosed with FSHD in 2014 when she was eight weeks pregnant with her second daughter. She has worked hard to overcome the
- [Help Wanted: UC Irvine study seeks volunteers](https://www.fshdsociety.org/2018/09/14/help-wanted-uc-irvine-study-seeks-volunteers/) - “I just finished participating in this study as their very first volunteer patient, visiting on the 14th and 21st of August 2018. It was very easy and straightforward.” – Bryan K. First, a heartfelt thank you to all who responded to the initial notice calling for volunteers to participate in the UC Irvine study of
- [Kansas City FSHD Family Day registration now open](https://www.fshdsociety.org/2018/09/16/kansas-city-fshd-family-day-registration-now-open/) - You can now register for the FSHD Family Day Conference in Kansas City, taking place on November 10. Registration is free but required so that we have accurate numbers of attendees for planning purposes.If you have already RSVP'd with Kiley Sims at KUMC, you don't need to register again. Otherwise, please register here. Deadline to register
- [For newly (and not so newly) diagnosed people](https://www.fshdsociety.org/2018/09/17/for-newly-and-not-so-newly-diagnosed-people/) - We have published a new e-brochure, "Not Alone," by Kelly Mahon Hessler. Based on interviews with a wide range of FSH muscular dystrophy patients, parents, and partners, this e-brochure assures those who have received a diagnosis that whatever they are feeling, others have had the same experience. We also provide resources for people to get
- [Listen up! Columbus TV news features our Walk leader](https://www.fshdsociety.org/2018/09/22/listen-up-columbus-tv-news-features-our-walk-leader/) - Check out this audio from an interview with Sue Aumiller, director of our Columbus Ohio chapter, with Mark Blazor from Columbus's top local station, 610-WTVN. Mark read the Columbus Dispatch's story about Sue and her family and felt compelled to call. When you open one door, others open too. Way to go Sue!
- [Announcing our St. Louis chapter](https://www.fshdsociety.org/2018/09/28/announcing-our-st-louis-chapter/) - We are proud to announce our newest chapter of the FSH Society, in St. Louis, MO. Big thank you to Marsha Sverdrup for stepping up as our chapter director. We will be officially launching the chapter on November 1st at the Daniel Boone Branch Library. We really hope you’ll be there – more details &
- [FSH Society latest grant awards](https://www.fshdsociety.org/2018/10/17/fsh-society-latest-grant-awards/) - By Daniel Paul Perez & June Kinoshita One of the blue-sky dreams for those of us working toward treatments for FSH muscular dystrophy is regenerative therapy—treatments to generate healthy muscles to restore or replace those damaged by disease. We have taken an important step toward realizing this dream with our latest grant award for a
- [And the new ICD-10 code for FSHD is...](https://www.fshdsociety.org/2018/11/08/and-the-new-icd-10-code-for-fshd-is/) - The new ICD-10 code for Facioscapulohumeral muscular dystrophy is G71.02. The International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) is a system used by physicians and other healthcare providers to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care in the United States. Codification means a disease is assigned
- ["Building the house" for FSHD therapies](https://www.fshdsociety.org/2018/12/12/building-the-house-for-fshd-therapies/) - Patients who volunteer for research are the keystone of drug development efforts. Without them, the entire edifice built by teams of biologists, chemists, doctors, and other PhDs and MDs, would collapse. Patient involvement is more important than ever now, as many companies are starting to develop drugs. They urgently want to know, what does it
- [New England chapter meeting talks](https://www.fshdsociety.org/2018/12/22/new-england-chapter-meeting-talks/) - The University of Massachusetts Medical School's Wellstone Center for FSHD Research is a leading team of scientists dedicated to understanding FSH muscular dystrophy and developing treatments. The center kindly hosted our New England Chapter's November 4th meeting, which began with a tasty lunch, followed by a series of talks about some of the cutting-edge research
- [Peace Joy Gratitude](https://www.fshdsociety.org/2018/12/24/peace-joy-gratitude/) - You've made a difference and we are grateful As the year draws to a close, all of us at the FSH Society wish you Happy Holidays and thank you for the sacrifices you have made to support our mission. You have had life-changing impacts, not only through the research and patient education your donations have funded,
- [An urgent call to action](https://www.fshdsociety.org/2018/12/23/an-urgent-call-to-action/) - This year-end webinar by FSHD Society CEO Mark Stone is a must watch. He lays out our detailed strategy that will get treatments for FSHD to our families by the year 2025. We have a moral imperative to do everything in our power to overcome all obstacles to FDA approval of the therapies that are
- [Webinar on swallowing and speech in FSHD](https://www.fshdsociety.org/2019/01/14/webinar-on-swallowing-and-speech-in-fshd/) - Wednesday, February 13, noon to 1:00 pm EST. Register here We are delighted to bring to you this live webinar with Kiera Berggren, a research speech-language pathologist (SLP) in the Department of Neurology at Virginia Commonwealth University. Berggren was previously part of the FSHD Clinical Trial Research Network (CTRN) site at the University of Utah
- [FSH Society Radio - Two perspectives on living with FSHD](https://www.fshdsociety.org/2019/01/23/fsh-society-radio-two-perspectives-on-living-with-fshd/) - Join us via Facebook Live on Wednesday, January 30th, at 8:00 pm Central / 9:00 pm Eastern time for our live interview with two people from the Chicagoland area who live with FSHD. Ramsey Shahed is a 21 year old student at DePaul University studying for his master's in cybersecurity. He was diagnosed around ate 14
- [FSHD Society names Jamshid Arjomand, PhD, Chief Science Officer](https://www.fshdsociety.org/2019/01/24/fsh-society-names-jamshid-arjomand-phd-chief-science-officer/) - The FSHD Society today announced that Jamshid Arjomand, PhD, has joined the organization as its Chief Science Officer. The Society is the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy, or FSHD, a hereditary muscle-damaging condition that affects an estimated one million men, women, and children worldwide. There is currently no drug to
- [A modern take on muscular dystrophies](https://www.fshdsociety.org/2019/03/04/a-modern-take-on-muscular-dystrophies/) - Here's a very interesting post on Psychology Today by Jennifer Jo Brout, PsyD, about the need to raise public awareness around specific muscular dystrophies in the age of genomic medicine. Dr. Brout's grandfather, who had FSHD, co-founded the Muscular Dystrophy Association. When she was diagnosed recently with FSHD, she became curious about the history of
- [Giving a piece of me for research](https://www.fshdsociety.org/2019/03/11/giving-a-piece-of-me-for-research/) - by HILARY A. C. HOOVER, Ocala, Florida I tested positive for the FSHD gene and am currently asymptomatic. Due to my status, I was asked to donate muscle tissue via open muscle biopsy at the Kennedy Krieger Institute (KKI) in Baltimore, Maryland. Knowing that my donated tissue will be used in research to test new treatments
- [Industry collaborative workshop on FSHD clinical trial readiness](https://www.fshdsociety.org/2019/03/13/industry-collaborative-workshop-on-fshd-clinical-trial-readiness/) - Yesterday, the FSH Society convened a landmark meeting at the Tommy Douglas Conference Center, a stone's throw from the headquarters of the Food and Drug Administration (FDA). Several FDA regulators attended in addition to researchers from seven biopharmaceutical companies, academic scientists who are leading the effort to prepare the field for clinical trials, and representatives
- [FSHD Advocate is out!](https://www.fshdsociety.org/2019/04/03/fshd-advocate-is-out/) - The latest issue of our flagship magazine, FSHD Advocate, has left the printers and will be landing soon in your mailbox. To get an advance look, or if you're a digital-only reader, here is the full issue online. Highlights include: Special section on the Therapeutics Accelerator project, what it is and what we are doing
- [Gear up for World FSHD Day 2019!](https://www.fshdsociety.org/2019/04/12/gear-up-for-world-fshd-day-2019/) - Sharpen your orange slicers and polish your selfie sticks! World FSHD Day is on June 20th and you can help us turn social media world orange on that day by sharing the World FSHD Day logo and your orange slice selfie photos. If you want to make an even bigger splash, how about planning a
- [Fulcrum Acquires Global Rights to a Potential Disease-Modifying Therapy for FSHD](https://www.fshdsociety.org/2019/04/23/fulcrum-therapeutics-acquires-global-rights-to-losmapimod-a-potential-disease-modifying-therapy-for-facioscapulohumeral-muscular-dystrophy/) - From Fulcrum Therapeutics press release. Fulcrum plans to launch a Phase 2b clinical trial in FSHD in mid-2019 CAMBRIDGE, Mass., April 23, 2019 – Fulcrum Therapeutics, a biotechnology company focused on discovering and developing therapies to rebalance gene expression, today announced an exclusive worldwide license agreement with GlaxoSmithKline (GSK) for development and commercialization of the
- [TikTok to participate in World FSHD Day](https://www.fshdsociety.org/2019/06/14/tiktok-to-participate-in-world-fshd-day/) - TikTok, the video-sharing app formerly known as musical.ly, is the world's fastest growing social networking platform. This year, TikTok is participating in World FSHD Day on June 20th. The relationship was cultivated by our friends at FSHD China. TikTok will be reaching out to Chinese pop stars and other celebrities, who will share a 15-second
- [World FSHD Day 2019 highlights](https://www.fshdsociety.org/2019/06/28/world-fshd-day-highlights/) - World FSHD Day was a HUGE Success! Thank you to all of you who hosted events and participated! Here are a few highlights: The Tampa Chapter and George Pollock Raced Across America with Team FSHD Skyland Trail The Atlanta Chapter lit up the King & Queen Buildings The New England Chapter lit up the Zakim Bridge The Arizona and Utah Chapters had
- [International FSHD Patient Advocacy Summit](https://www.fshdsociety.org/2019/07/11/international-fshd-patient-advocacy-summit-2/) - Marseille meeting convenes delegates from 11 nations BY SHEILA HAWKINS, TRUSTEE, MUSCULAR DYSTROPHY UK FSH muscular dystrophy affects people of every nation and ethnicity, and the effort to develop treatments will undoubtedly require the participation of patients from multiple countries. With international clinical trials already under way and more on the horizon, it was more
- [Hot off the press: FSHD Advocate](https://www.fshdsociety.org/2019/08/01/hot-off-the-press-fshd-advocate/) - The newest issue of FSHD Advocate has left the printers and will be landing soon in your mailbox. To get an advance look, or if you’re a digital-only reader, here is the issue online. Highlights: Industry Collaborative on FSHD Drug Development. Preparing the way for clinical trial success. Highlights of our milestone meeting with regulators,
- [Tim Hollenback on Milwaukee's PBS [VIDEO]](https://www.fshdsociety.org/2019/09/20/tim-hollenback-on-milwaukees-pbs/) - We are so excited and proud to see Tim Hollenback, host of the FSHD Society talk radio show, featured by Milwaukee's 10thirtysix news program last night. In this segment, we get a glimpse of Tim's life as a Little League baseball coach, exhorting his team to "play fearless," and also get to see him hosting
- [Chicagoland FSHD Family Day on October 20](https://www.fshdsociety.org/2019/09/23/chicagoland-fshd-family-day-on-october-20/) - Join us for the first-ever FSHD Family Day Conference to grace the shores of Lake Michigan. Join family, friends, and fellow travelers living with FSH muscular dystrophy for a wonderful half day of learning and connecting. You’ll meet the region’s leading doctors and specialists, such as Drs. Charulatha Nagar and Don McGovern, to learn about
- [The Fierce Urgency of Now](https://www.fshdsociety.org/2019/10/28/the-fierce-urgency-of-now-for-fshd-community/) - “We are now faced with the fact that tomorrow is today. We are confronted with the fierce urgency of now.” Thus Dr. Martin Luther King Jr. exhorted the nation at the March on Washington on that historic summer day in 1963. While King spoke of long-deferred dreams of equality, today in the FSHD community we
- [Dan Levy’s FSHD family story](https://www.fshdsociety.org/2019/11/14/dan-levys-fshd-family-story/) - If you’ve been on our social media channels, you may have seen our posts about actor Dan Levy’s Omaze campaign to raise funds for the FSHD Society but you may not know his family story and his connection to FSHD. Dan and his father, Eugene Levy, are actors and co-creators of Schitt$ Creek, a Canadian
- [$447,620 in funding for four new projects](https://www.fshdsociety.org/2019/11/23/447620-in-funding-for-four-new-projects/) - The FSHD Society Board of Directors approved $447,620 in funding for four projects submitted in the February 2019 cycle. These grants will move forward four distinct strategies that show promise. Identification and testing of DUX4 inhibitory compounds. Angela Lek, PhD, Yale University, Hartford, Connecticut, USA, and Louis Kunkel, PhD, Boston Children’s Hospital, Massachusetts, USA. $110,000
- [The Future is Now for the Voice of the Patient](https://www.fshdsociety.org/2019/12/05/the-future-is-now-for-the-voice-of-the-patient/) - At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have already lost? What if a drug made you stronger temporarily, even if it did not stop the disease? Only those who are directly affected by
- [ABC's of Clinical Trials for FSHD [VIDEO]](https://www.fshdsociety.org/2019/12/09/abcs-of-clinical-trials-for-fshd/) -  We're pleased to share with you this video recording from the FSHD Society's webinar, "ABC's of Clinical Trials," given on December 7, 2019. Our webinar speaker is Rabi Tawil MD, a foremost authority on FSH muscular dystrophy. Dr. Tawil is director of the Fields Center for FSHD Research at the University of Rochester in
- [A Monument of Pearls](https://www.fshdsociety.org/2019/12/16/a-monument-of-pearls/) - BY BELINDA MILLER MANASSAS, VIRGINIA The United States contains some of the most magnificent monuments in the world, both natural and human-made. But few compare to the state of South Dakota’s Mount Rushmore – the massive granite crag sculpted to honor some of our most iconic leaders. A lesser-known South Dakotan, but equally impressive, is
- [It's Time to Act: Take Our Muscle Biopsy Survey](https://www.fshdsociety.org/2019/12/19/its-time-to-act-take-our-muscle-biopsy-survey/) - Over the years, researchers have relied on the generosity and courage of our patient community who volunteer for important clinical studies in FSHD. Many of you have given your valuable time, undergone complicated muscle strength test, filled out endless questionnaires and even volunteered to give muscle biopsies so scientists can better understand FSHD disease progression.
- [Voice of the Patient Forum [VIDEO]](https://www.fshdsociety.org/2020/01/24/video-on-the-voice-of-the-patient-forum/) - Recorded on January 20, this informational video discusses the upcoming Voice of the Patient Forum (or patient-focused drug development meeting) for facioscapulohumeral muscular dystrophy (FSHD) that is being organized by the FSHD Society for April 21. James Valentine explains the role of the patient's voice in the FDA's consideration of drug approval applications. June Kinoshita
- [Why Your Voice Matters](https://www.fshdsociety.org/2020/01/29/why-your-voice-matters/) - This April 21, the FSHD Society is holding its landmark Voice of the Patient Forum on drug development for FSH muscular dystrophy. You will be hearing a lot about it over the coming months. This event is our community’s opportunity to testify to the FDA on the impact FSHD has on your life and the
- [Losmapimod receives orphan drug designation](https://www.fshdsociety.org/2020/02/04/losmapimod-receives-orphan-drug-designation/) - Fulcrum Therapeutics has announced that losmapimod has received orphan drug designation from the U.S. Food and Drug Administration. Losmapimod is currently in a Phase 2 clinical trial for facioscapulohumeral muscular dystrophy (FSHD). The drug qualified for this status because FSHD, with an estimated 20-40,000 affected individuals in the U.S., is considered a rare disease. (The
- [Which symptoms have the biggest impact on your life?](https://www.fshdsociety.org/2020/02/10/which-symptoms-have-the-biggest-impact-on-your-life/) - On April 21, the FSHD Society is convening its landmark Voice of the Patient Forum, our community’s opportunity to testify to the FDA on the impact FSHD. An important question to answer is, which symptoms have the biggest impact on your life? Your testimony will result in a Voice of the Patient Report that will
- [FSHD and Rare Disease Day](https://www.fshdsociety.org/2020/02/14/fshd-and-rare-disease-day/) - Celebrate Rare Disease Day on February 29th! Rare Disease Day takes place annually on the last day of February, a month known for having a rare number of days. On February 29th, people around the world will gather to increase knowledge about rare diseases and how they impact patients’ lives. Rare Disease Day promotes awareness
- [What worries you about the future?](https://www.fshdsociety.org/2020/02/25/what-worries-you-about-the-future-with-fsh-muscular-dystrophy/) - Our Voice of the Patient Forum on drug development for FSHD will take place on April 21st. This landmark event is our community’s platform to testify to the FDA on the impacts FSHD, including the worries that you have about the future for yourself and your loved ones. An important aspect of FSHD is how
- [How are you treating symptoms now?](https://www.fshdsociety.org/2020/03/09/how-are-you-treating-symptoms-now/) - Our Voice of the Patient Forum on April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve a new drug, it needs to know whether the drug works better than treatments that patients are using now. Help us prepare for our meeting
- [FSHD Advocate on the Road to Clinical Trials](https://www.fshdsociety.org/2020/03/12/fshd-advocate-on-the-road-to-clinical-trials/) - “Never give up, for that is just the place and time that the tide will turn.”--Harriet Beecher Stowe As we enter a new decade – one that we believe will see effective therapies become available – the families that form the FSHD Society face new challenges. This year, we have an unprecedented opportunity to participate
- [What would be meaningful benefits of future treatments?](https://www.fshdsociety.org/2020/03/23/what-would-be-meaningful-benefits-of-future-treatments/) - The current COVID-19 crisis has forced us to postpone the Voice of the Patient Forum. We will be rescheduling it for the earliest feasible date. In the meantime, we hope you and your family stay healthy through this difficult time. We have set up our "Sequester Camp" page with activities and resources to help our
- [“Coming out” with my FSHD diagnosis](https://www.fshdsociety.org/2020/04/28/coming-out-with-my-fshd-diagnosis/) - This story about "coming out" with an FSHD diagnosis was first published in the 2014 summer issue of the FSH Watch newsletter. Its message is timeless. The #FSHDselfies campaign by Kelly Mahon Arlington, Virginia My hands were shaking and my stomach was doing somersaults. You can do it, the voice in my head said. I
- [FSHD Society participating in #GivingTuesdayNow](https://www.fshdsociety.org/2020/05/04/fshd-society-participating-in-givingtuesdaynow/) - This May 5, the FSHD Society is participating in #GivingTuesdayNow. This is a global day of giving and unity that arose as an emergency response to the unprecedented need caused by COVID-19. This is a day when we can all come together and give back, no matter who or where we are. Every act of
- [Landmarks and Social Media Are Turning Orange This World FSHD Day](https://www.fshdsociety.org/2020/06/16/landmarks-and-social-media-are-turning-orange-this-world-fshd-day/) - This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease. On World FSHD Day, the Society will
- [Nationwide Virtual Walk & Roll for FSH Muscular Dystrophy](https://www.fshdsociety.org/2020/07/21/nationwide-virtual-walk-roll-for-fsh-muscular-dystrophy/) - The FSHD Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it will hold a slew of virtual Walk & Roll to Cure FSHD events this September 12. The online events will take the place of dozens of in-person gatherings that had been planned for this summer and fall.
- [Help us grow our network](https://www.fshdsociety.org/2020/08/10/help-us-grow-our-network/) - The future is in YOUR hands The FSHD community has an urgent challenge and a powerful opportunity to help support research studies and upcoming clinical trials. Currently, there are nearly a dozen very promising drug candidates. One is already being tested in patients. Others are in earlier stages. We are more hopeful than ever before
- [A success for the virtual 2020 International Research Congress](https://www.fshdsociety.org/2020/10/15/a-success-for-the-virtual-2020-international-research-congress/) - by Jamshid Arjomand, PhD, Chief Science Officer, FSHD Society Our original plan for 2020 was to host the International Research Congress (IRC) in Washington, DC, in proximity to the FDA and the National Institutes of Health. The US capital (in an election year, no less!) would have provided an additional level of excitement to researchers
- [Glee star is Walk & Roll national ambassador](https://www.fshdsociety.org/2020/08/25/glee-star-is-walk-roll-national-ambassador/) - https://www.youtube.com/watch?v=rvk9QjfSTcg The FSHD Society announced today that Max Adler, an actor best known for his roles on the hit series “Glee,” available for streaming on Netflix, and “Switched at Birth”, is serving as this year’s national ambassador for the Society’s signature fundraiser, Walk & Roll to Cure FSHD, taking place September 12. There are currently
- [2020 Young Investigator Awards](https://www.fshdsociety.org/2020/08/17/2020-young-investigator-awards/) - The FSHD Society is proud to announce that three highly deserving individuals are each being given a Young Investigator Award for 2020. This award recognizes junior researchers who show exceptional promise and are likely to have a significant impact on the FSHD field. Meet the winners! Angela Lek, PhD, Associate Research Scientist, Yale University Angela
- [UCLA Health - Southern California’s Frontlines of FSHD Research](https://www.fshdsociety.org/2020/09/11/ucla-health-southern-californias-frontlines-of-fshd-research/) - Nestled into a basement in an outpatient building at UCLA Health’s Westwood hospitals is UCLA Neurology, home to ground-breaking FSHD Research. UCLA Health already ranks as the #1 hospital in California, and 4th nationally according to the U.S. News & World Report’s 2020 rankings, but it is also part of an elite network of
- [Sole Searching](https://www.fshdsociety.org/2020/10/19/sole-searching/) - Finding shoes to fit your needs AND your personality by Beth Deloria, Allard (content sponsor) Did you know that shoes can be used to guess someone’s traits or characteristics? A 2012 study showed that 90 percent of a person’s personality is reflected in their choice of footwear. For those of us needing custom orthotics and
- [The community's role in accelerating therapies](https://www.fshdsociety.org/2020/10/26/the-communitys-role-in-accelerating-therapies/) - https://www.youtube.com/watch?v=ghioWyIPUQ0 In our webinar on "Accelerating Therapy Development: The Patient Community Role," Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics, discusses the many ways in which your efforts, as individuals and family members living with FSHD, have paved the way for biopharmaceutical companies to pursue drug development. They truly cannot do it
- [We Heard Your Voice](https://www.fshdsociety.org/2020/11/09/we-heard-your-voice/) - by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to educate the FDA on how FSHD has impacted their lives. More than 600 people responded to our surveys and provided statements which have been compiled
- [Time equals lives. The parent’s voice](https://www.fshdsociety.org/2020/11/21/time-equals-lives-the-parents-voice/) - by Julie When you are a child, you feel like you have all the time in the world. When you become a parent, you realize this isn’t true. Your own children grow up way too fast. And when your child has FSH muscular dystrophy, this is not only poignant, but heartbreaking, as Julie testified at
- [FSHD Society releases Voice of the Patient Report](https://www.fshdsociety.org/2020/11/16/fshd-society-releases-voice-of-the-patient-report/) - Landmark report captures compelling testimony by patients and family members about the severity of disease symptoms and urgent need for treatment LEXINGTON, MASS. (PRWEB) NOVEMBER 12, 2020 The FSHD Society has released its Voice of the Patient Report, a landmark publication based on its June 29, 2020, externally led patient-focused drug development (EL-PFDD) meeting. During the meeting,
- [Voice of the Patient - The Biopharma perspective](https://www.fshdsociety.org/2020/12/14/voice-of-the-patient-the-biopharma-perspective/) - It has been a banner year for the biopharma industry, with record investment, groundbreaking COVID vaccine efforts and incredible scientific advances. It is a particularly hopeful time, both for the industry and for the people living with diseases that our companies are addressing. At the end of the day, though, it only matters if the
- [Telemedicine for FSHD](https://www.fshdsociety.org/2020/04/22/telemedicine-for-fshd/) - Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don't have the time or resources to travel long distances may never have the opportunity to receive state-of-the art medical care for their condition. That is about to change. One
- [High-intensity exercise training in FSHD](https://www.fshdsociety.org/2018/11/11/high-intensity-exercise-training-in-fshd/) - by Amanda Hill If you or a loved one is affected by FSHD, or any muscular dystrophy for that matter, chances are that you’ve heard it’s best not to exercise, just to avoid damaging or “using up” what healthy muscle is left. There is a pervasive uncertainty and fear among patients and doctors alike that
- [Inaugural Walk & Roll Campaign a Tremendous Success!](https://www.fshdsociety.org/2018/11/13/inaugural-walk-roll-campaign-a-tremendous-success/) - by LEIGH REYNOLDS, Kansas City, Missouri When we began planning for the inaugural Walk & Rolls to Cure FSHD, a $105,000 fundraising goal felt ambitious. Then an incredible group of volunteer leaders stepped up to pioneer this national campaign in five communities across the US. They worked tirelessly to make magic happen, and their dedication, drive,
- [Follistatin gene therapy strengthens muscle in FSHD mouse model](https://www.fshdsociety.org/2018/11/20/follistatin-gene-therapy-strengthens-muscle-in-fshd-mouse-model/) - An experimental gene therapy has been shown to enlarge and strengthen muscles in a mouse model of facioscapulohumeral muscular dystrophy (FSHD). The study was published on November 15 in the Journal of Clinical Investigation Insight by Scott Harper, PhD, and his team at Nationwide Children's Hospital. The study made use of mice developed by the
- [Scooting around unconscious biases](https://www.fshdsociety.org/2018/11/25/scooting-around-unconscious-biases/) - by MEREDITH MADDRY, Atlanta, Georgia I have heard that to have an “executive presence” in business, one should stand tall, smile, and extend your arm for a firm handshake. Yet what if people in business can no longer stand, or smile, and are losing strength in their arms―should they give up the chance at a fulfilling
- [Our Guide for Schools](https://www.fshdsociety.org/2018/12/03/our-guide-for-schools/) - The FSH Society's Guide for Schools is available online for download and print here. Created by a team of national experts, this booklet provides information about FSHD and the impact the disease can have on students’ experiences during the school day. The goal is to help parents and teachers prepare for some of the challenges
- [Freedom Through AFOs](https://www.fshdsociety.org/2018/12/10/freedom-through-afos/) - by ROD FULMER, McDonough, Georgia Who wants to wear ankle braces? I wish I didn’t have to wear any, but because I need them, I’m glad I found carbon fiber braces that have worked very well for me. Mine are made by Allard USA, and I discovered them somewhat by accident. My sister and I were
- [DUX4 structure unveiled](https://www.fshdsociety.org/2018/12/12/dux4-structure-unveiled/) - MINNEAPOLIS, MN- December 12, 2018 - New research by University of Minnesota scientists has revealed the three-dimensional structure of the DUX4 protein, which is responsible for the disease, facioscapulohumeral muscular dystrophy (FSHD). Unlike the majority of genetic diseases, FSHD is not caused by a protein that is missing or not functioning properly. Rather it is
- [Embrace your experience](https://www.fshdsociety.org/2021/01/01/embrace-your-experience/) - by Lori Brant There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this: “Man, I am tired. It has been such a long day.” I hate having to concentrate on each and every step. I can’t stand making sure I’m taking my
- [Fulcrum’s interim findings from ReDUX4 trial are “encouraging”](https://www.fshdsociety.org/2020/08/12/fulcrums-interim-findings-from-redux4-trial-are-encouraging/) - This week, Fulcrum Therapeutics announced results from an interim analysis of data collected from its Phase 2 ReDUX4 trial, which is testing the effect of a drug called losmapimod in individuals with facioscapulohumeral muscular dystrophy (FSHD). The drug, which is taken as a pill twice a day, is intended to reduce the expression of a
- [Compression belts help me look buff again](https://www.fshdsociety.org/2020/12/07/compression-belts-help-me-look-buff-again/) - by Rick Whitehead, Knoxville, Tennessee I’d like to share one of the most valuable tips I’ve had for dealing with “FSHD belly.” My abdominal core muscles had become like weak balloons, displacing internal organs. It’s not comfortable, not attractive and sometimes painful. I was in a clinical trial in Rochester, New York, and had a
- [Making the Most of the Holidays](https://www.fshdsociety.org/2020/12/11/making-the-most-of-the-holidays/) - A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright
- [Time equals lives. The patient’s voice](https://www.fshdsociety.org/2020/11/14/time-equals-lives-the-patients-voice/) - FSH muscular dystrophy is described as a “slowly progressing” condition, and for many affected individuals, this is blessedly true. But for a significant number, the symptoms can worsen suddenly, sometimes overnight. Whether one’s FSHD is slow or fast moving, the losses of strength and function tally up year after year. Time is not your friend.
- [Strength in Determination](https://www.fshdsociety.org/2019/06/28/strength-in-determination/) - Editor's note: We are proud to share, with the author's permission, an essay by eighth grader Sam Ray of Willcox, Arizona, who was a winner this year of the annual, national essay contest, “Breaking Barriers: In Sports, In Life.” The contest was created by Scholastic and Major Baseball League in honor of Jackie Robinson, to
- [Holiday gift ideas](https://www.fshdsociety.org/2018/12/14/holiday-gift-ideas/) - If you are scrambling for last-minute holiday gifts to delight the FSHers in your life, here are a few suggestions. We'd love to hear about your best holiday gift ideas in the comments section! Reusable drinking straws. While FSHD can make it hard for some to sip through a straw, many others rely on straws
- [Finding beauty in disability](https://www.fshdsociety.org/2018/12/17/finding-beauty-in-disability/) - by AUBRIE LEE I have a disability. It has manifested differently throughout my life, I have felt differently about it in various stages of my life, and people have treated me differently my whole life because of it. I could walk when I was a child, and I transitioned to using a wheelchair over my
- [Have a bigger impact than ever](https://www.fshdsociety.org/2020/11/12/have-a-bigger-impact-than-ever/) - In this year of unprecedented upheaval and uncertainty, you may wonder if you can continue to support your favorite cause (the FSHD Society!) with your yearly gift. Instead, consider becoming a Torch Bearer – by joining our newly named monthly giving program! By making a small monthly gift, in an amount that you're comfortable donating
- [Feeling the urgency of NOW. Time = Lives](https://www.fshdsociety.org/2020/11/05/feeling-the-urgency-of-now-time-lives/) - Last year, the FSHD Society launched an aggressive initiative to accelerate therapeutic development in FSHD. Because of our donors' commitment and investment, we hosted the first Industry Collaborative Workshop for Therapy Development in FSHD with pharmaceutical companies, researchers, and regulatory and governmental agencies to identify the major obstacles to clinical trial development and regulatory approval
- [Get a MOVE on!](https://www.fshdsociety.org/2020/11/23/get-a-move-on/) - by June Kinoshita, FSHD Society When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker or a wheelchair? What about respiratory support? While
- [Walking in water – mindful movement through difficult times](https://www.fshdsociety.org/2020/11/05/walking-in-water-mindful-movement-through-difficult-times/) - by Jennifer Egert, PhD, New York City I had a picture in my head: swimming in a pond at the base of a waterfall. Six months after the arrival of COVID-19, I craved an experience to "feel alive" again and planned a visit to upstate New York to see good friends. The first morning, my
- [Muscle activation strategies for FSH muscular dystrophy](https://www.fshdsociety.org/2019/01/30/muscle-activation-strategies-for-fsh-muscular-dystrophy/) - Our Dallas support group meeting on January 19th featured outstanding presentations and hands-on demonstrations of muscle activation and the Rolf method, which one of our new Dallas-area members has found very beneficial in addressing his FSHD issues. Note that these methods have not been studied scientifically for efficacy in FSHD; we are simply sharing patients'
- [Our inaugural volunteer leadership summit](https://www.fshdsociety.org/2019/01/31/our-inaugural-volunteer-leadership-summit/) - Last weekend, January 25-27, 2019, a force descended upon the Chicago O’Hare airport. And we're not talking about the Polar Vortex. Twenty-nine chapter directors and Walk & Roll leaders convened for the FSHD Society’s inaugural volunteer leadership summit for two days of intensive learning, sharing, and networking – all to train them to become effective,
- [Virginia Commonwealth University joins FSHD network](https://www.fshdsociety.org/2019/02/04/virginia-commonwealth-university-joins-fshd-network/) - The FSHD Clinical Trial Research Network (CTRN) has expanded to eight sites in the U.S. with the addition of Virginia Commonwealth University (VCU) in Richmond, Virginia. The VCU site is led by Nicholas Johnson, MD, FAAN, MSCI, who previously directed the FSHD CTRN site at the University of Utah. Johnson is Vice Chair of Research at Virginia
- [Why I did a 180 on participating in clinical trials](https://www.fshdsociety.org/2020/10/28/why-i-did-a-180-on-participating-in-clinical-trials/) - By Elizabeth W, Los Angeles, California There is a lot of fear when you live with a progressive disease like FSH muscular dystrophy. Your mind is constantly circling a sea of scary "what ifs." What if I can no longer walk around the office? What if the next time I fall I hit my head?
- [Playing the hand you've been dealt](https://www.fshdsociety.org/2019/02/20/playing-the-hand-youve-been-dealt/) - By Landon Poindexter One thing I have come to learn in my eighteen-year life is that no matter how hard you try, there is no avoiding hardships that are sent your way. How you deal with these hardships will define who you are. When obstacles come your way, you have two choices: play the cards
- [Our annual report card [2018]](https://www.fshdsociety.org/2019/02/25/our-annual-report-card/) - We are honored that you chose to support us. FSH muscular dystrophy, a debilitating disease affecting nearly a million men, women, and children worldwide, has long lacked any treatment, but because of you, our families can look forward to having a therapy by the year 2025, if not sooner. Because of you, thousands of families
- [Chicagoland chapter members invite you to their Walk & Roll to Cure FSHD!](https://www.fshdsociety.org/2019/02/27/chicagoland-chapter-members-invite-you-to-their-walk-roll-to-cure-fshd/) - “For all my friends and family out there who haven’t heard, I have recently been diagnosed with FSHD which is a form of muscular dystrophy. It is a progressive disease that basically attacks my muscles, and there is nothing I can do right now to stop or slow it down. I have joined the FSHD
- [Team FSHD Skyland Trail will compete in the 2019 Race Across America](https://www.fshdsociety.org/2019/02/28/team-fshd-skyland-trail-will-compete-in-the-2019-race-across-america/) - From PRWeb The FSHD Society and Skyland Trail today announce that they are jointly entering an eight-person team in the 2019 Race Across America (RAAM) to raise funds for their respective causes. The two non-profit organizations, one focused on facioscapulohumeral muscular dystrophy (FSHD) and the other on mental health and suicide prevention, joined forces to tackle the grueling, 3,000-mile
- [Outstanding FSH muscular dystrophy care in Connecticut](https://www.fshdsociety.org/2019/03/01/outstanding-fsh-muscular-dystrophy-care-in-connecticut/) - By Kathy Senecal, Connecticut chapter director Last week some members of the FSHD Society and I attended the Community Advisors Gathering at the Hospital for Special Care in New Britain, CT. The presenters were: Lynn Ricci, President and CEO; Wendy DeAngelo, Vice President of Development and Communications; and Dr. Kevin Felice, Chief of Neuromuscular Medicine.
- [Pandemics past and a diagnosis long delayed](https://www.fshdsociety.org/2020/10/14/pandemics-past-and-a-diagnosis-long-delayed/) - by Bill Mirza, Palm Harbor, Florida I am an 86 year old white male, living with FSHD for the past 68 years. I wanted to share my life's FSHD experiences with other individuals who may, I trust, find this brief history of my condition interesting. I was born and raised in Chicago; the youngest of
- [Fighting for life insurance](https://www.fshdsociety.org/2019/03/09/fighting-for-life-insurance/) - Excerpt from Howard Chabner's forthcoming FSHD Autobiography: I tried to find life insurance but brokers told me I was uninsurable because of my FSHD. Finally, one broker found a company willing to issue a policy, an affiliate of Mutual of Omaha called United of Omaha. But it quoted a premium nearly double the standard premium
- [Tips and tricks: Putting on a jacket](https://www.fshdsociety.org/2019/03/12/tips-and-tricks-putting-on-a-jacket/) - Tips and tricks: Putting on a jacket When you are in a wheelchair and can't raise your arms, putting on a jacket can be a contortionist's conundrum, even with the help of a caregiver. Dean Pelton shares a ruse he has come up with on this video. As he says, this is a great way
- [Bay Area FSHD Family Day Conference](https://www.fshdsociety.org/2019/03/14/bay-area-fshd-family-day-conference-2/) - Register here! Join us on Sunday, April 28, for our Bay Area FSHD Family Day conference. It will be held from 1:00-6:00 pm at the beautiful Li Ka Shing Center on the campus of the Stanford University of School of Medicine. Co-organized with Dr. John Day, director of Stanford's FSHD research center, this year's conference
- [The 11-step challenge](https://www.fshdsociety.org/2019/03/18/the-11-step-challenge/) - At the close of 2018, two adventurers accomplished what heretofore was thought impossible – they each traversed Antarctica solo, unaided, on foot. One of these intrepid souls, Louis Rudd, when asked what he did to keep going, retold a story about Robert Falcon Scott’s 1912 failed attempt. Someone had calculated that had Scott taken “just
- [FSHD Society Radio with Ben Livingston, neon artist](https://www.fshdsociety.org/2019/03/20/fsh-society-radio-with-ben-livingston-neon-artist/) - Join FSHD Radio via Facebook Live on Wednesday, March 27th, at 8:00 pm Central / 9:00 pm Eastern time for our live interview with Austin-based artist Ben Livingston. Ben drew our attention earlier this year when he shared his video, "My miracle at Barton Springs," on Facebook. According to his website: Livingston is internationally known
- [Miami FSHD Family Day Talks](https://www.fshdsociety.org/2019/03/22/miami-fshd-family-day-talks/) - Here are the agenda, speaker biographies, and presentation materials from our Miami FSHD Family Day Conference, which was held on Saturday, February 23, 2019, at the beautiful Newman Alumni Center at the University of Miami in Coral Gables. Click on the talk titles to download the slides. Best practices in caring for FSHD • FSHD
- [Tips & Tricks: Kinesiology tape to fix a droopy lip](https://www.fshdsociety.org/2019/03/23/tips-tricks-kinesiology-tape-to-fix-a-droopy-lip/) - Here's a handy tip from Diana N: I was interested to read the Press'n Seal idea for stopping dry-eye. I don’t have that problem, but most of my face (except my eyes) is completely non-functional, especially my lower lip. This means that it usually droops and at night my gums dry out and get inflamed.
- [Marie Morrell joins FSH Society Board of Directors](https://www.fshdsociety.org/2019/03/24/marie-morrell-joins-fsh-society-board-of-directors/) - At its December meeting, the FSH Society's Board of Directors elected Marie Morrell, JD, as its newest board member. Marie has worked in the aerospace and defense industry since 2003 and currently serves as a Vice President and in-house counsel for an Arizona-based company that designs, develops and manufactures survivable fuel systems for helicopters around
- [Tips and tricks: Nite Hood](https://www.fshdsociety.org/2019/03/29/tips-and-tricks-nite-hood/) - Eye dryness during the night is a chronic complaint for those who can't close their eyelids fully, as is often the case for people with FSH muscular dystrophy. One solution from the grocery store aisle is to use Glad Press & Seal as a self-adhesive mask that holds eye ointment and moisture in place. For
- [Bay Area Family Day Video and Slides](https://www.fshdsociety.org/2019/06/16/bay-area-family-day-video-and-slides/) - Here are the slides and videos from the Bay Area Family Day conference, held at the Li Ka Shing Center, Stanford Medical School, on Sunday, April 28, 2019. Click on the titles of the talks to see the slides. Click on "video" to watch the recorded talk. Advances in FSHD treatments Getting ready for FSHD
- [Staying Active While at Home](https://www.fshdsociety.org/2020/09/22/staying-active-while-at-home/) - https://www.youtube.com/watch?v=i_Xvs0kjd_4 In this recorded webinar, Julie Hershberg, PT, DPT, NCS, presents evidence-based benefits or physical therapy and exercise for patients with facioscapulohumeral muscular dystrophy (FSHD). Dr. Hershberg is a neurologic physical therapist, founder and owner of re+active physical therapy & wellness and adjunct instructor of clinical physical therapy at the University of Southern California.
- [A giant of FSHD research shares his "regrets"](https://www.fshdsociety.org/2020/09/30/a-giant-of-fshd-research-shares-his-regrets/) - https://www.youtube.com/watch?v=PoPmkNC8jfY In his keynote lecture from this year's International Research Congress on FSHD, held virtually on June 25-26, George Padberg, MD, regarded as the father of modern FSHD research, shared observations from his four decades of seeing patients and directing ground-breaking research. Now retired from UMC St. Radboud in the Netherlands, Dr. Padberg was invited
- [Dr. Anthony Romeo on scapular surgery](https://www.fshdsociety.org/2020/08/28/dr-anthony-romeo-on-scapular-surgery/) - https://www.youtube.com/watch?v=32-4riUbEUA One of the classic symptoms of FSHD is “scapular winging.” The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel’s wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works for some patients is surgery to
- [FSHD Clinical Trial Research Network expands to four new sites](https://www.fshdsociety.org/2020/08/11/fshd-clinical-trial-research-network-expands-to-four-new-sites/) - The FSHD Society announced today that it has awarded $300,000 a year to expand the Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (FSHD CTRN), with consideration of follow-on funding of $300,000 a year in 2021 and 2022. The network is a consortium of academic research centers in the United States and Europe with expertise in FSHD clinical
- [Facioscapulohumeral muscular dystrophy community speaks to the FDA](https://www.fshdsociety.org/2020/06/29/facioscapulohumeral-muscular-dystrophy-community-speaks-to-the-fda/) - The FSHD Society is holding a landmark meeting today in which individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) will tell representatives from the U.S. Food and Drug Administration (FDA) about how the muscle-wasting disease affects their health, and what they hope future treatments will do to improve their quality of life. One of
- [FSHD Society opens its first global, online educational conference](https://www.fshdsociety.org/2020/06/27/fshd-society-opens-its-first-global-online-educational-conference/) - The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living
- [27th Annual FSHD International Research Congress Goes Virtual](https://www.fshdsociety.org/2020/06/25/27th-annual-fshd-international-research-congress-goes-virtual/) - The FSHD Society announced the opening today of its 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history. The conference is widely seen as the premier global platform for the discussion and dissemination of state-of-the-art research on facioscapulohumeral muscular dystrophy (FSHD). A record 210 researchers,
- [Muscle Activation Exercises](https://www.fshdsociety.org/2017/06/13/muscle-activations-exercises/) - https://www.youtube.com/watch?v=8Heh43wd6nE Lynnette Rasmussen OTRL provides detailed, hands-on demonstrations of a variety of gentle exercises targeting specific muscles. Developed in collaboration with an FSH muscular dystrophy patient, these exercises demonstrate principles that can be adapted to your specific condition and needs.
- [YouTube series on interabled relationships](https://www.fshdsociety.org/2020/08/23/youtube-series-on-interabled-relationships/) - Meet Jenny and Tony, our new FSHD University "adjunct professors." Jenny and Tony are a married couple who share information and offer encouragement on their YouTube channel in the context of their interabled relationship. Tony's life with FSHD has set them on a journey to discover better ways to problem solve together and live life
- [ReDUX4 clinical trial update](https://www.fshdsociety.org/2020/07/29/redux4-clinical-trial-update/) - https://www.youtube.com/watch?v=efKjVbxkSjc In this video, Diego Cadavid, MD, Senior Vice President, Clinical Development, at Fulcrum Therapeutics provides an update on ReDUX4, the Phase 2b clinical trial currently underway testing the safety and efficacy of losmapimod to treat facioscapulohumeral muscular dystrophy (FSHD). The company started recruiting volunteers for the trial in August of 2019 and completed enrollment
- [Danny Kurtzman designs for life](https://www.fshdsociety.org/2019/04/18/danny-kurtzman-designs-for-life/) - The headquarters of Ezekiel Clothing is tucked in a bland office park in Irvine, California, but inside it’s anything but bland, with its too-cool-for-school interior of concrete, charred timber, and smoky steel. When I arrived there, tapping tentatively on an unmarked, tinted glass door, I wondered if I had come to the right place. Soon,
- [First-Ever FSHD Evidence-based Care Guideline Published by the American Academy of Neurology](https://www.fshdsociety.org/2015/07/27/first-ever-fshd-evidence-based-care-guideline-published-by-the-american-academy-of-neurology/) - From PRWeb Contact Information: Rosie Hale 617-779-1893 FSHSociety@shiftcomm.com Guideline is a landmark step forward for the diagnosis; comes as a result of FSH Society’s advocacy efforts over the past 20 years BOSTON, MA (July 27, 2015) – The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral
- [Ask the physical therapist](https://www.fshdsociety.org/2015/11/09/ask-the-physical-therapist-3/) - Live Facebook Q&A session Friday, November 13 10:30-11:00 AM Pacific Time Mark you calendar for this real-time Q&A session with Julie Hershberg PT, DPT, NCS. She will be on the FSH Society's Facebook page this Friday to respond to your questions. If time runs out, she will respond off-line. Julie Hershberg is a physical therapist
- [Music Therapy and Facioscapulohumeral muscular dystrophy](https://www.fshdsociety.org/2016/01/24/music-therapy-and-facioscapulohumeral-muscular-dystrophy/) - The Los Angeles FSHD Connects group will be meeting on Saturday, February 13.FSH muscular dystrophy can weaken muscles involved with breathing, so we invited Chris Anderson, a music therapist who uses vocal training methods for people with neuromuscular conditions, to share her insights and methods. Check out our Event listing for details.
- [Ask the Physical Therapist: Can braces or taping assist weak muscles?](https://www.fshdsociety.org/2016/01/25/ask-the-physical-therapist-2/) - The following is from the transcript to a session conducted on Friday, November 13, 2015, over the FSH Society’s Facebook page with Julie Hershberg PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy
- [Ask the Physical Therapist: Shoulder blades and high arches](https://www.fshdsociety.org/2016/02/26/ask-the-physical-therapist-part-2/) - From the FSH Society’s Facebook Q&A session with Julie Hershberg, PT, DPT, NCS. Hershberg is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. Q. My husband has FSHD, and his shoulder blade is hanging on by the muscle by the clavicle and
- [Q & A with Dr. Rabi Tawil, Part 1](https://www.fshdsociety.org/2016/09/01/q-dr-rabi-tawil-part-1/) - Here are selected questions from an FSH Society webinar held on October 1, 2015, with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of
- [Cool technology: Elevating walker chair](https://www.fshdsociety.org/2016/09/16/cool-technology-elevating-walker-chair/) - We're excited to see this ingenious concept for a mobility device. It's being developed by Garrett Brown, inventor of the steadycam. Shown trying out a prototype is Alan Brown, who has FSH muscular dystrophy. Alan organized the Musclepalooza fundraiser last year. Thanks to David Garden for sending us this video.
- [Q&A with Dr. Rabi Tawil, Part 2](https://www.fshdsociety.org/2016/09/30/qa-dr-rabi-tawil-part-2/) - This is a continuation of our Q&A session with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of the guideline can be downloaded at
- [Waking up your muscles with Lynnette Rasmussen](https://www.fshdsociety.org/2016/12/17/waking-muscles-lynnette-rasmussen/) - by Amy Tesolin-Gee, Midland, Michigan Several FSHD patients, family members, and FSHD-experienced clinicians came together in Ann Arbor on June 4, 2016, for an educational meeting including lots of helpful, informal discussion time. Many people traveled a good distance, and some drove from as far away as northern Michigan and Columbus, Ohio. Lynnette Rasmussen and Laura
- [Ask the Physical Therapist: What are the best exercises for different muscles?](https://www.fshdsociety.org/2017/01/13/ask-the-pt-what-are-the-best-exercises-for-different-muscles/) - The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. Q.
- [Download our medical alert card](https://www.fshdsociety.org/2017/01/19/download-medical-alert-card/) - If you ever find yourself in the emergency room, you want your medical care team to know about your status as a person with FSH muscular dystrophy. Our medical alert card, which provides essential information for emergency responders, is available for you to download, cut out, fold and carry in your wallet. Just click here: FSH Society Medical Alert
- [Ask the Physical Therapist: Asymmetrical Wasting and Braces](https://www.fshdsociety.org/2017/01/19/ask-physical-therapist-asymmetrical-wasting-braces/) - The following is part of the transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. With
- [Ask the Physical Therapist: Running a Marathon and Customized Workouts](https://www.fshdsociety.org/2017/02/07/ask-physical-therapist/) - The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I am a
- [Ask the Physical Therapist: Zero-Gravity Treadmills, Strength Training, and Braces for Lordosis](https://www.fshdsociety.org/2017/02/10/ask-physical-therapist-zero-gravity-treadmills-strength-training-braces-lordosis/) - The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I have been
- [Ask the Physical Therapist: Car Accidents and FSHD](https://www.fshdsociety.org/2017/02/13/ask-physical-therapist-car-accidents-fshd/) - The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I have FSHD
- [Ask the Physical Therapist: Inversion tables, trigger points, and chronic pain management](https://www.fshdsociety.org/2017/02/17/ask-physical-therapist-inversion-tables-trigger-points-chronic-pain-management/) - The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I recently was
- [Accessibility hacks, mobility aids, and tips (Part 1 of 3)](https://www.fshdsociety.org/2017/03/20/accessibility-hacks-mobility-aids-tips-part-1-3/) - Written by Paul Shay Groton, Massachusetts I am one of the lucky, late-onset FSHers: diagnosed at age 57, now 71. As my progression has been relatively slow over those 14 years, I have incorporated a number of adaptive devices and techniques that I can share with you. Since my wife and I are still working, we have
- [Accessibility hacks, mobility aids, and tips (Part 2 of 3)](https://www.fshdsociety.org/2017/05/01/accessibility-hacks-mobility-aids-tips-part-2-3/) - Written by Paul Shay Groton, Massachusetts Grab Bars. In conjunction with my half-steps, we added a conventional grab bar in the doorway to our garage. My wife came up with the idea of using a six-inch, black wrought iron drawer pull in the doorway in our house that contains the step from the entry area to
- [FSH Society Talk Radio on mindfulness in coping with FSHD](https://www.fshdsociety.org/2017/06/25/fsh-society-talk-radio-mindfulness-coping-fshd/) - LISTEN LIVE HERE Wednesday, June 28, 2017, 9:00 pm EST / 8:00 pm CST Our guest is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an advisor and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is
- [Bone Health and FSHD](https://www.fshdsociety.org/2017/07/25/bone-health-fshd/) - by JUNE KINOSHITA, FSH Society Muscle plays an important role in bone health, and diseases such as Duchenne muscular dystrophy have been linked to low bone mineral density (BMD), abnormal bone turnover, and increased risk of fractures. It was not known whether FSH muscular dystrophy also affects bone health, and a new study published in Muscle
- [Tips for air travel with a power wheelchair](https://www.fshdsociety.org/2017/09/26/tips-air-travel-power-wheelchair-2/) - Howard Chabner, a lawyer, disabilities advocate, and long-time FSH Society Board member, loves to travel internationally and has much experience with addressing the innumerable obstacles that impeded disabled travelers. He has compiled an extensive guide to air travel with a power wheelchair, which we are pleased to share with our readers. Download here: Tips for air
- [Bay Area FSHD Family Day Conference Videos and Slides](https://www.fshdsociety.org/2017/09/26/bay-area-fshd-family-day-conference-videos-slides/) - We are pleased to share slides and videos from our conference held in San Francisco on July 15, 2017. Thank you to our wonderful speakers and to our sponsor Acceleron Pharma. We're grateful to Jim Albert for editing the videos. Click on the titles to watch the videos. Welcome. June Kinoshita, executive director. Neil Solomon
- [Ask the Physical Therapist series](https://www.fshdsociety.org/2017/09/30/ask-physical-therapist-series/) - Our blog series of Q&As with physical therapist Julie Hershberg contain so many useful tips that we thought it would be helpful to index them all in one place. Bookmark this post so you'll have it at your fingertips! Inversion tables, trigger points, and chronic pain management Car Accidents and FSHD Zero-Gravity Treadmills, Strength Training,
- [Rediscovering the Freedom of Bicycling](https://www.fshdsociety.org/2017/11/26/rediscovering-freedom-bicycling/) - by MICHELLE CHAUVIN Sterling Heights, Michigan Bike riding is something I've always enjoyed. After my husband and I were married, we would drag our bikes down the stairs from our third-floor apartment for a four-mile ride and run every day after work. Seven years later we had our son, and two years after that our
- [Accessibility Hacks, mobility aids, and tips (Part 3 of 3)](https://www.fshdsociety.org/2018/01/03/accessibility-hacks-mobility-aids-tips-part-3-3/) - More useful tips from Paul Shay of Groton, Massachusetts. For past postings see Accessiblity Hacks Part 1 and Part 2. Reacher-Grabbers. I have four of these―one for the garage (I’ve dropped my keys more than once), two for the main living area of our house, and one for upstairs. Three of them are “cheap-o” models I got
- [Tips for getting your insurer to approve genetic testing](https://www.fshdsociety.org/2018/01/22/tips-getting-insurer-approve-genetic-testing/) - We hear often from patients and families who are having difficulty getting an insurer to pay for genetic testing of FSHD. It is our impression that the payors are denying claims based on incorrect assumptions about the medical benefits of genetic diagnosis, or outdated information about the heritability of a genetic disease that can cause
- [The Physiatrist's role in managing FSH muscular dystrophy](https://www.fshdsociety.org/2018/01/29/physiatrists-role-managing-fsh-muscular-dystrophy/) - https://www.youtube.com/watch?v=vYV8HLHHfII Many of us have never heard of this field of medicine, but physiatrists are a very important resource for FSHD patients. In this video, Dr. Susan Keeshin of Shirley Ryan Ability Lab in Chicago, one of the nation's leading rehabilitation center, introduces the field of physiatry for FSH muscular dystrophy patients. Dr. Keeshin says
- [Why have an annual check-up?](https://www.fshdsociety.org/2018/02/05/why-have-an-annual-check-up/) - https://www.youtube.com/watch?v=VPoIsHhYNf0 Many people with FSHD do not see a neuromuscular doctor regularly. Told that there is no treatment, they wonder, "What's the point?" In this video, Jeffrey Statland MD explains why a yearly visit is important. First, the doctor can check to make sure symptoms have not gotten significantly worse since the last visit. With
- [Knowing others who share your diagnosis makes you happier](https://www.fshdsociety.org/2018/03/05/knowing-others-share-diagnosis-makes-happier/) - Findings from major study of long-term disability We at the FSH Society have long believed that helping individuals and families with FSHD meet one another is one of the most important services that we provide. It’s why we invest energy in our peer support network, local gatherings, social media groups, and the biannual FSHD Connect
- [Los Angeles FSHD Family Day videos](https://www.fshdsociety.org/2018/03/07/los-angeles-fshd-family-day-videos/) - We are pleased to share these videos from our 2017 FSHD Family Day conference in Los Angeles, held on October 21, 2017. We are so grateful to Laurie Heyman and Selina Lai for their help with programming and event logistics; David Garden for recording the conference video; and Ellen Rennell for editing the videos. A
- [Accessibility Hack: Sandals for the shower](https://www.fshdsociety.org/2018/04/07/accessility-hack-sandals-for-the-shower/) - Shared by ANTHONY MANNUZZA, Woodhaven, New York Living with FSHD has caused great difficulty for me in keeping my balance. I'm sure you've heard this many times from others who have this condition. I was about to have my shower converted into a walk-in because I was afraid of falling while showering. But then I found
- [Moving toward well-being](https://www.fshdsociety.org/2018/04/30/younger/) - Muscular dystrophy is a part of me, but it does not have me by DAVID YOUNGER, PhD Austin, Texas I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a
- [Bed yoga: Four easy poses to start or end your day](https://www.fshdsociety.org/2018/05/07/bed-yoga-four-easy-poses-to-start-or-end-your-day/) - by KATHY SENECAL, Cromwell, Connecticut I became a yoga practitioner in the early 1990s, and over time I received certification and training in hatha and Svaroopa® yoga, taught classes, and ran workshops in those traditions for 10 years. I went on for advanced training as a yoga therapist, and after being diagnosed with FSHD, I began
- [Rochester FSHD Family Day videos](https://www.fshdsociety.org/2018/05/15/rochester-fshd-family-day-videos/) - Watch the videos here. The University of Rochester Fields Center for FSHD Research has posted a summary and videos from the 6th annual FSHD Family Day Conference held on April 7, 2018. Jointly sponsored by the University of Rochester, Leiden University Medical Center, and the FSH Society, the meeting presented the latest developments in FSHD
- [John Bach, MD, on noninvasive ventilatory support](https://www.fshdsociety.org/2018/07/02/john-bach-md-on-noninvasive-ventilatory-support/) - https://www.youtube.com/watch?v=Wzr3T_fZv58 John Bach, MD, of the UMDNJ New Jersey Medical School, is a leading authority on breathing issues that can arise in individuals with facioscapulohumeral muscular dystrophy and other neuromuscular conditions. In this FSH Society webinar held on June 19, 2018, Dr. Bach provides an overview on best practices to ensure good management of breathing
- [Stance control braces](https://www.fshdsociety.org/2018/07/11/stance-control-braces/) - Contributor: Kathy Senecal, Cromwell, Connecticut As a wearer of a stance control brace for 3 years, I became aware that I have not yet met another individual with FSHD wearing one. After doing a little research, there seems to be a lack of information and/or access, resulting in this type of brace being underutilized. First
- [Managing breathing issues](https://www.fshdsociety.org/2018/08/20/managing-breathing-issues/) - Notes from our webinar with John Bach, MD by June Kinoshita, FSH Society The best practices for managing breathing issues were the subject of the June 19, 2018, FSH Society webinar with John Bach, MD. Bach, of the Rutgers University New Jersey Medical School, is a leading authority on respiratory issues that can arise in individuals
- [Me and my cowboy boots](https://www.fshdsociety.org/2018/08/22/me-and-my-cowboy-boots/) - From the department of silver linings by Jeff Gibler, Humble, Texas When I was a kid we would come to the United States during the summer to visit my paternal grandparents in Houston. It was also when we got to do our annual visits to the dentist, and I, having been born cross-eyed and undergone three
- [Don Nemke’s Tips for Living with FSHD](https://www.fshdsociety.org/2018/10/11/don-nemkes-tips-for-living-with-fshd/) - by Don Nemke, Oro Valley, Arizona My name is Don Nemke and I’m 72 years old. I’ve had symptoms of FSH Muscular Dystrophy starting 60 years ago and was formally diagnosed about 54 years ago. I’m currently in an advanced stage of FSH and recently fully wheelchair-bound. As an older patient with FSHD muscular dystrophy I
- [The use of antioxidants in FSHD](https://www.fshdsociety.org/2018/10/29/the-use-of-antioxidants-in-fshd/) - What is the scientific rationale and what does the evidence show? by Adam Denny, PhD In recent years, scientists around the world have begun to investigate the role of oxidative stress in FSHD. A 2018 study reported that muscle biopsies from people with FSHD had greater levels of oxidative stress markers when compared to healthy
- [FSH Society Radio - Acupuncture for FSH muscular dystrophy](https://www.fshdsociety.org/2019/02/13/fsh-society-radio-acupuncture-for-fsh-muscular-dystrophy-2/) - Join us via Facebook Live on Wednesday, February 27th, at 8:00 pm Central / 9:00 pm Eastern time for our live interview with Katelyn Michals, a national board-certified licensed acupuncturist who has been working with patients in the Greater Milwaukee Area since 2008. She graduated from the Midwest College of Oriental Medicine with a Master’s
- [Tips and tricks for managing eye dryness](https://www.fshdsociety.org/2019/02/15/tips-and-tricks-for-managing-eye-dryness/) - One of our members went to dry eye clinic recently and they recommended using Glad Press-N Seal as an overnight eye mask for keeping eyes closed and moist. She has tried it out and shared this report: "I tear off a strip maybe 3 inches wide, put some ointment in each eye, then close my
- [Swallowing and speech in FSH muscular dystrophy](https://www.fshdsociety.org/2019/02/22/swallowing-and-speech-in-fsh-muscular-dystrophy/) - Our recent webinar featured speech language pathologist Kiera Berggren, from the FSHD clinical research center at Virginia Commonwealth University. Berggren has a passion for understanding and treating issues with swallowing (dysphagia) and speech communication, which she feels are often overlooked. Here she shares an abundance of knowledge and practical advice for FSHD patients. https://www.youtube.com/watch?v=NCUP94TtOQc
- [FSH Society Radio on Living, Loving, Caring, Sharing](https://www.fshdsociety.org/2019/04/19/fsh-society-radio-on-living-loving-caring-sharing/) - Join us via Facebook Live on Wednesday, April 24, at 9:00 pm Central / 10:00 pm Eastern time (note change of time) for our conversation with Drs. Ora and Isaac Prilleltensky about sustaining healthy, honest relationships with family and friends while living with a chronic condition. Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from
- [Tips and tricks: Pencil grips](https://www.fshdsociety.org/2020/07/27/tips-and-tricks-pencil-grips/) - If you're hand grip has weakened, here's a product that could be helpful. Originally designed to help children grip a pencil properly, these pencil grips are manufactured from soft silicone with perforations to keep your skin comfortable. The manufacturer states that this "pencil gripper can be used by children, adults or the old with arthritis
- [Tips and tricks: STABILicers light ice cleats](https://www.fshdsociety.org/2019/03/07/tips-and-tricks-stabilicers-light-ice-cleats/) - Avoiding falls is especially challenging in cold winter climates, where even the most careful walker is no match for a patch of ice. Several of our members swear by strap-on, light-weight ice cleats as their must-have winter gear. They caution that the cleats must be taken off when you transition to indoor flooring, because they
- [Surgery fixed my eye problems](https://www.fshdsociety.org/2019/04/25/surgery-fixed-my-eye-problems/) - by Nikki Young, Clarksburg, Maryland Like many others with FSHD, I have suffered from dry eyes. Weakness in the muscles around my eyes prevented me from closing my eyelids fully, even in my sleep, so my eyes would become dry, itch, burn, and tear up. It got so bad at times that people would ask
- [Tips and tricks for getting up after a fall [VIDEO]](https://www.fshdsociety.org/2019/05/07/tips-and-tricks-for-getting-up-after-a-fall/) - Check out this video by an occupational therapist demonstrating a variety of ways to get up off the floor after a fall. These require having some strength and might not work for everyone, but knowing these tricks could come in handy. https://www.youtube.com/watch?v=4ETgQD8QhZs
- [Medicare coverage for ongoing maintenance physical therapy](https://www.fshdsociety.org/2019/05/20/medicare-coverage-for-ongoing-maintenance-physical-therapy/) - Article adapted with permission from Melissa Fox, PT, DPT, University of Virginia Health System. There are times when a short course of physical therapy (PT) can meet your current needs, and you can then continue exercises on your own. Other times, however, ongoing PT may be necessary to maintain your current status (strength, flexibility, mobility,
- [Webinar video: FSHD 101](https://www.fshdsociety.org/2019/05/28/webinar-video-fshd-101/) - In our webinar from May 22, Samantha LoRusso, MD, provides a concise introduction to the basic facts about FSH muscular dystrophy and answers dozens of questions from our live webinar audience, everything from unusual symptoms, types of braces, genetic testing, and new treatments. https://www.youtube.com/watch?v=4fu5hH3Q5SM?t=5s
- [“Universal Design” is Smart Design](https://www.fshdsociety.org/2019/06/10/universal-design/) - It makes living easier for everyone by Jane Earl, Madison, Wisconsin I am 66 years old, with FSH muscular dystrophy, and live with my 82-year-old husband, Tony Earl, in a high-rise condominium in downtown Madison, WI. I anticipate having to transition from a walker and scooter to an automated wheelchair in the future. So, when
- [Stance-control brace webinar [VIDEO]](https://www.fshdsociety.org/2019/06/15/video-stance-control-brace-webinar/) - Here is the recording of our June 8th webinar with Abbey Downing, a certified prosthetist/orthotist from the Hanger Clinic in Wethersfield, CT. Ms. Downing has worked with Kathy Senecal, a client with FSHD, on fitting her with a brace. She provides an excellent explanation of the mechanics of this type of brace and the types
- [NAD+ supplementation may help aging muscle](https://www.fshdsociety.org/2019/07/29/nad-supplementation-may-help-aging-muscle/) - Could it be helpful for FSHD? BY AMANDA HILL, HIGHLANDS RANCH, COLORADO In the current absence of a treatment for FSHD, many patients experiment with a variety of lifestyle or diet changes, supplements, naturopathic medicine, or other types of treatments to help alleviate and cope with disease symptoms. In recent years, several laboratory studies have
- [Tips and tricks - The Stand Aid](https://www.fshdsociety.org/2019/08/03/tips-and-tricks-the-stand-aid/) - Here's a solution to a delicate problem: the Stand Aid PTA, or power-toilet assist. Several of our members have raved to us about this "life-changing invention" that restores independence and dignity to those whose weakening muscles make it challenging to rise from a toilet seat after answering nature's call. According to the company's website, "The
- [Tips & tricks - the Travel Scoot](https://www.fshdsociety.org/2019/08/30/tips-tricks-the-travel-scoot/) - By Bill Maclean, Blue Bell, Pennsylvania A few years ago, I purchased a Travel Scoot, and it has been an excellent investment. I use it for any distances and it has traveled the world with me. It is great for going to the mall for shopping and any type of event that requires some walking.
- [CBD and medical marijuana [VIDEO]](https://www.fshdsociety.org/2019/09/19/video-on-cbd-and-medical-marijuana/) - Here are the slides and the recording from our webinar with Jennifer Bernstein on CBD and medical marijuana. With the spread of legalized medical marijuana and the passage of the 2018 Farm Bill that made CBD legal in all 50 states, it’s a bit of the Wild West out there for individuals seeking relief from
- [Tax advantages from ABLE accounts](https://www.fshdsociety.org/2019/10/10/tax-advantages-from-able-accounts/) - You may not even know you are eligible for these By Chris Stenmon, CPA, Braintree, Massachusetts Some consider this the most significant federal legislation for disabled individuals since President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law in 1990. Called the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE)
- [FSHD and COVID-19](https://www.fshdsociety.org/2020/03/10/fshd-and-covid-19/) - As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the risk of serious illness from COVID-19 infection is the same as the general population. The CDC and MDA websites provide detailed information about who is
- [Travel report: Boston Abilities Expo](https://www.fshdsociety.org/2020/04/17/travel-report-boston-abilities-expo/) - by Danielle Liptak, Leland, North Carolina Last fall, I traveled with my parents to Boston for the Abilities Expo. It was a great trip and I’d like to share my experiences. With so many of us sheltering in place, it's good to reminisce and to look forward to the day when we can travel again.
- [Tips and Tricks - The IndeeLift](https://www.fshdsociety.org/2020/07/20/tips-and-tricks-the-indeelift/) - by Dani Liptak I get up in the middle of the night to use the bathroom. I take a step from my bed, reach for my walker, and instantly hit the floor with such force I knock the wind out of myself. My cat goes scurrying by, and I wishfully hope she is going to
- [Finding a way to keep working](https://www.fshdsociety.org/2020/07/08/finding-a-way-to-keep-working/) - by Lynn Stevens, Bossier City, Louisiana About 10 years ago, the progression of FSHD on my body forced me to begin evaluating whether I should continue trying to work full-time or consider what was next for me. I couldn’t imagine sitting on the sidelines, as this was not in my DNA (pun intended). But after
- [‘Eddie-mechanics’ was my secret to success](https://www.fshdsociety.org/2020/06/29/eddie-mechanics-was-my-secret-to-success/) - by Ed Barocas, Montclair, New Jersey In spring of 2019, I received two awards for my legal work, the New Jersey Law Journal’s Attorney of the Year Award, and the American Civil Liberties Union’s Roger Baldwin Award for a lifetime of defending civil liberties. The ceremonies were beautiful but bittersweet. I had announced my retirement
- [Losmapimod as potential COVID-19 treatment?](https://www.fshdsociety.org/2020/06/10/losmapimod-as-potential-covid-19-treatment/) - Our science team has often discussed the potential of therapies for facioscapulohumeral muscular dystrophy to address other conditions such as cancer, based on the biology of the disease. Now we have learned that losmapimod, currently in a Phase 2b clinical trial for FSHD, will be investigated as a treatment for COVID-19. According to a press
- [Dyne ramps up its FSHD program](https://www.fshdsociety.org/2020/05/20/dyne-therapeutics-ramps-up-its-fshd-program/) - Dyne Therapeutics, a Waltham, Massachusetts, biopharmaceutical company, announced yesterday that it is accelerating its FSHD therapy development program. Here is their press release: Dyne to evaluate therapies targeting genetic cause of FSHD under agreement with international research organization UMONS Leading FSHD researcher Jeffrey Statland, M.D., appointed to Scientific Advisory Board WALTHAM, Mass. – Dyne Therapeutics,
- [Self-healing from muscular dystrophy](https://www.fshdsociety.org/2019/09/05/self-healing-from-muscular-dystrophy/) - BY BEATRIZ NASCIMENTO, SAO PAOLO, BRAZIL I had some mild muscle weakness since childhood, but in my 20s everything was getting harder. I was constantly fatigued and stressed. By my early 30s, fast decline in muscle functions due to FSH muscular dystrophy was making me believe that the rest of my life would be a painful downhill trip toward
- [FSHD Warrior Pose [VIDEO]](https://www.fshdsociety.org/2019/09/12/fshd-warrior-pose/) - by Faye Flatt, Ontario, Canada Yoga has always looked effortless to me and I enjoy watching the gentle movements from one pose and smooth transition to another. In my head it looked like something I could do. So a couple years ago I decided to try it. The instructor was a friend and encouraged me.
- [Ask the Physical Therapist: How much is too much exercise and "pinging" in an arm](https://www.fshdsociety.org/2017/02/03/ask-physical-therapist-much-much-exercise-pinging-arm/) - The following is a partial transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. How can
- [Ask the Physical Therapist: Myofascial Release and Paraspinal Exercises](https://www.fshdsociety.org/2017/01/30/ask-physical-therapist-myofascial-release-paraspinal-exercises/) - The following is a partial transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC. I have
- [Imaging study shows positive effects of exercise and CBT on muscle degeneration](https://www.fshdsociety.org/2017/02/22/imaging-study-shows-positive-effects-exercise-cbt-muscle-degeneration/) - In 2014, a Dutch team reported that aerobic exercise training (AET) and cognitive behavioral therapy (CBT) decreased fatigue and improved the quality of life significantly in FSHD patients. Now, the same group has published a study demonstrating that not only did patients given AET or CBT feel more energized and active, but that their muscles
- [Fulcrum update on ReDUX4 trial](https://www.fshdsociety.org/2020/05/13/fulcrum-update-on-redux4-trial/) - Fulcrum Therapeutics Reports Recent Business Highlights and First Quarter 2020 Financial Results May 13, 2020 at 7:00 AM EDT CAMBRIDGE, Mass., May 13, 2020 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today provided a business update and reported financial results
- [Participate in COVID-19 Survey](https://www.fshdsociety.org/2020/05/06/participate-in-covid-19-survey/) - The FSHD Society is partnering with researchers on an important study of the impact of COVID-19 on the muscular dystrophy community. Please read this letter from Dr. Rabi Tawil and click on the link below to take the survey. Deadline is May 22, 2020. Thank you! Dear Participant, We are reaching out to people in
- [Member of the team](https://www.fshdsociety.org/2020/05/04/member-of-the-team/) - Getting involved in research is about so much more than helping yourself by Jim Albert, Eldersburg, Maryland Patients who are new to research may be trying to decide if clinical studies are something in which they want to participate. They might wonder, Am I a good fit? Will this study benefit me? I hope this
- [Press release from Fulcrum Therapeutics](https://www.fshdsociety.org/2020/04/02/press-release-from-fulcrum-therapeutics/) - Fulcrum Therapeutics Provides Business Update on Impact of COVID-19 CAMBRIDGE, Mass., April 2, 2020 – Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today provided a business update in the context of the developing situation with the COVID-19 (coronavirus) pandemic. “During the
- [#GivingTuesday matching gift challenge!](https://www.fshdsociety.org/2018/11/23/givingtuesday-matching-gift-challenge-2/) - #GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on November 27th, and a group of generous benefactors has pledged to match up to $85,000 of your GivingTuesday donations! Celebrated on the Tuesday following Thanksgiving (in the U.S.) and widely recognized shopping events Black Friday
- [A slam poet's take on living with FSHD](https://www.fshdsociety.org/2019/04/02/a-slam-poets-take-on-living-with-fshd/) - As with any aspect of the human condition, living with FSHD can inspire all forms of artistic expression. Cypriot Argyri Ioizou recently won his nation's first-ever slam poetry competition. Congratulations! Here's his story. Scroll down for the poem and video of his prize-winning performance: I was born in 1979 in Manchester in the UK then
- [Newly funded grants](https://www.fshdsociety.org/2019/04/05/newly-funded-grants/) - Steps forward toward new treatments The FSH Society’s board of directors voted to approve $332,906 in funding for three grant applications submitted for the August 2018 cycle. The first project investigates a novel hypothesis based on evidence that DUX4 damages muscle cells by disrupting internal quality control processes. The other projects aim to advance candidate
- [My journey continues](https://www.fshdsociety.org/2019/04/06/my-journey-continues/) - by Ian Rys, Port St. John, Florida When I turned 50, I began to feel I was moving and walking differently. I won’t lie: That scared me. I’ve always tried to have a positive outlook, but FSHD was starting to break me. I have great support from family and friends, but I needed something more.
- [The time is now...](https://www.fshdsociety.org/2019/04/08/the-time-is-now/) - In a world awash with billion-dollar profits for drugs to treat the most common ailments ─ hypertension, acid reflux, diabetes, high cholesterol, and so on ─ patients with FSH muscular dystrophy may believe that rare conditions like theirs will never get the time of day from the pharmaceutical industry. In fact, this is no longer
- [Mountains to climb](https://www.fshdsociety.org/2019/04/11/mountains-to-climb/) - by Neenah Williams, Colorado Springs, Colorado I was diagnosed with FSH muscular dystrophy at the age of 16. I am now 27 years old and have started to feel more of its effects. From an early age, I began to lose the ability to lift my arms higher than 90 degrees. That never stopped me
- [Organizing a Walk & Roll ─ if I can do it, so can you!](https://www.fshdsociety.org/2019/04/13/organizing-a-walk-roll-─-if-i-can-do-it-so-can-you/) - by Susan Aumiller, Powell, Ohio Last year, soon after my son and husband were diagnosed with FSHD, I called the FSH Society and said I’d like to organize a fundraiser. Within weeks, I found myself launching the first Walk & Roll to Cure FSHD in the state of Ohio. I had never done anything like
- [MRI-guided biopsy shows promise for clinical trials](https://www.fshdsociety.org/2019/04/15/mri-guided-biopsy-shows-promise-for-clinical-trials/) - Method may predict DUX4 activity in patients’ muscles A central tenet of modern FSH muscular dystrophy research is that the muscle damage in this disease is caused by a gene called DUX4. Normally silent in adult skeletal muscle, DUX4 is expressed through a genetic aberration and triggers a shower of toxic molecular events. This idea
- [$100,000 matching gift challenge!](https://www.fshdsociety.org/2019/04/22/100000-matching-gift-challenge/) - The time to act is now If we deliver on our promise to have therapies to our families by 2025, it will be because of your donation today. With your continued support, this year we will: begin our Therapeutic Accelerator Project to clear the path to clinical trials and FDA approval of new treatments; expand
- [Finding FSHD: the story of DUX4 in a zebrafish](https://www.fshdsociety.org/2019/04/29/finding-fshd-the-story-of-dux4-in-a-zebrafish/) - by Amanda Hill, Highlands Ranch, Colorado When studying human disease and working to develop treatments, researchers typically perform experiments on animal models that represent the disease in a controlled laboratory setting. However, in the case of FSHD, creating an animal model which accurately represents the human disease has proven difficult. One reason is that FSHD
- [An update from Mark Stone [VIDEO]](https://www.fshdsociety.org/2019/05/01/an-update-from-mark-stone/) - Yesterday, FSHD Society President and CEO gave a special webinar to update our major stakeholders on the progress of the Therapeutic Accelerator initiative and answer their questions. We're delighted to share the recording of this webinar with you. Watch it here! https://www.youtube.com/watch?v=s9z7xgZ954Y
- [European centers to collaborate on FSHD ReSOLVE study](https://www.fshdsociety.org/2019/05/05/european-centers-to-collaborate-on-fshd-resolve-study/) - Three European centers have agreed to collaborate with the FSHD Clinical Trial Research Network on its NIH UO1 grant-funded projects, notably ReSOLVE. In doing so, they join eight US members of the CTRN. Funding sources for the network and the studies running on the network include: the FSH Society, Muscular Dystrophy Association, private philanthropy, National
- [Everything you ever wanted to know about FSHD](https://www.fshdsociety.org/2019/05/14/everything-you-ever-wanted-to-know-about-fshd/) - (but were afraid to ask) There’s no doubt that facioscapulohumeral muscular dystrophy is a complicated condition. The challenge of pronouncing it correctly is a piece of cake compared to the difficulty of understanding its genetics, peculiar effects on muscles, and the extreme diversity of its symptoms and severity. Our webinar on May 22 will introduce
- [A surprise $50K gift](https://www.fshdsociety.org/2019/05/16/a-surprise-50k-gift/) - From a simple act of kindness When Jim Chin, chair of the FSH Society board of directors, donated funds for travel scholarships so that 20 patients could attend our 2018 FSHD Connect conference in Las Vegas, he had no inkling of the dividends his gift would yield. $50,000 to be exact. That’s the amount of
- [How to launch your own chapter or Walk & Roll [VIDEO]](https://www.fshdsociety.org/2019/05/18/how-to-launch-your-own-chapter-or-walk-roll/) - Have you thought about what you can do in your own backyard to serve FSHD patients and families in your community and advocate for greater awareness and resources to develop treatments? Look no further. Our community development team of Beth Johnston and Anna Gilmore walk you through the ABC's of starting a chapter and Walk
- [Helping a songbird find her voice](https://www.fshdsociety.org/2019/05/30/helping-a-songbird-find-her-voice/) - Two weeks ago, we told you about the surprise $50,000 donation to the FSH Society in honor of Ann Blake. Now we learn in this heartwarming video that Blake did so much more than inspire a gift. The Red Songbird Foundation's Hilary Roberts says that Blake lifted her from deepest despair and urged her to
- [Webinar: Stance-control braces](https://www.fshdsociety.org/2019/06/03/webinar-stance-control-braces/) - Saturday, June 8, 2019 2:00 pm - 3:00 pm Our Connecticut chapter director, Kathy Senecal, wrote in our newsletter about how this type of leg brace made a difference in her life. In speaking with a leading FSHD physical therapist, we realized that stance control braces are not well-known or widely used for FSHD patients. In
- [FSH Society Releases White Paper on Clinical Trial Readiness](https://www.fshdsociety.org/2019/06/11/fsh-society-releases-white-paper-on-clinical-trial-readiness/) - New publication details findings from an industry collaborative workshop on facioscapulohumeral muscular dystrophy The FSH Society today announced that it has published a report on its recent workshop with government regulators, biopharma companies, and academic thought leaders to discuss the current state of clinical trial preparedness for facioscapulohumeral muscular dystrophy (FSHD). The Society is the
- [Many “Firsts” for the 26th Annual FSHD International Research Congress](https://www.fshdsociety.org/2019/06/19/many-firsts-for-the-26th-annual-fshd-international-research-congress/) - The world’s premier conference on the rare muscle disease sets attendance records as it convenes for the first time in Europe The FSH Society announced the opening today of its 26th annual International Research Congress (IRC) in Marseille, France. The conference is widely seen as the premier global platform for the discussion and dissemination of
- [2019 FSHD International Research Congress Highlights](https://www.fshdsociety.org/2019/07/08/2019-fshd-international-research-congress-highlights/) - At the 26th annual FSHD International Research Congress (IRC) this June 19-20, held in a 19th-century palace overlooking the harbor of Marseille, the 180 attendees were treated to a spectacular panorama of France’s second-largest city. From the massive 17th-century stone ramparts of Fort St. Jean to the cutting-edge architecture of the Museum of European and
- [Losmapimod clinical trial key information has been posted](https://www.fshdsociety.org/2019/07/13/losmapimod-clinical-trial-protocol-has-been-posted/) - UPDATED 8/9/19 Fulcrum Therapeutics has posted on clinicaltrials.gov information about its upcoming clinical trial of losmapimod. The trial is NOT YET RECRUITING volunteers. People can monitor the clinicaltrials.gov site regularly to see if a preferred site has opened. Patients are not restricted to only participating at the site closest to them. As trial sites open
- [Legendary festival to support FSHD Society](https://www.fshdsociety.org/2019/07/16/legendary-festival-to-support-fshd-society/) - A few years ago, James Partridge, a long-time FSHD Society member, decided to re-boot his career and pursue his passion for the blues. His home city of Ann Arbor, Michigan, had in decades past hosted a famed blues festival and he felt the call to resurrect it. Thus was born Ann Arbor Blues Festival version 2.0.
- [Art lets me grow](https://www.fshdsociety.org/2019/07/19/art-lets-me-grow/) - By Tiffany Zimmerman, Deltona, Florida I don’t think any of my work as an artist really focuses on my having FSHD. I do feel, however, that my art and creativity are among the major things in my life that keep me mentally balanced and uplifted. One of the hardest things about dealing with FSHD is
- [Our next radio guest is Alan Brown of NFL Films](https://www.fshdsociety.org/2019/07/24/our-next-radio-guest-is-alan-brown-of-nfl-films/) - We're excited to welcome Alan Brown of Holicong, Pennsylvania, as our guest on FSH Society Radio on July 31 at 9PM EST. Alan is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL). Alan has FSHD in
- [Webinar: CRISPR strategy to treat FSHD](https://www.fshdsociety.org/2019/08/02/webinar-crispr-strategy-to-treat-fshd/) - For our next webinar on August 10, at 2 p.m. EST, Charis Himeda, PhD, of the University of Nevada Reno will discuss her pioneering work to show how CRISPR gene-editing technology can be used to silence the DUX4 gene. She will give us an update about her progress toward developing a treatment, as well as answer
- [A new way to detect DUX4](https://www.fshdsociety.org/2019/08/05/a-new-way-to-detect-dux4/) - by Gholamhossein Amini Chermahini, MD, Columbus, Ohio Editor’s Note: Dr. Amini Chermahini and his colleagues were awarded the Best Poster Prize at this year’s FSHD International Research Congress. Here he explains the significance of this work. The FSHD field has made tremendous progress during the last decade or so, beginning with the identification of the
- [USA Today features Carden Wyckoff](https://www.fshdsociety.org/2019/08/08/usa-today-features-carden-wyckoff/) - Those of us who spend (too much) time on Facebook may recall the envy-inducing photos posted last summer by Carden Wyckoff as she traveled solo with her wheelchair across Europe. Her story caught the attention of a reporter, and is now featured on USA Today! "Wyckoff hopes her trip will encourage more people with disabilities
- [The disappearing bomb](https://www.fshdsociety.org/2019/08/12/the-disappearing-bomb/) - How DUX4 could cause FSHD without actually being there BY AMANDA HILL, HIGHLANDS RANCH, COLORADO In the FSHD research field, there is an emerging idea that the damage caused by DUX4 may linger on long after DUX4 is no longer present. But how can this be? To illustrate, imagine DUX4 as one of those trendy
- [The journey of a forensic psychologist](https://www.fshdsociety.org/2019/08/13/the-journey-of-a-forensic-psychologist/) - by Heather Green There are moments in every life that are defining. We can live weeks, months, and years sometimes without having anything memorable happen, then in a flash, our lives are forever changed. These moments create memories that are seared into our brains. Psychologists call these “flashbulb memories,” and these events, when remembered come
- [Radio show: Meet Heather Green, forensic psychologist](https://www.fshdsociety.org/2019/08/15/radio-show-meet-heather-green-forensic-psychologist-2/) - Join radio host Tim Hollenback via Facebook Live on Thursday, August 29, at 9:00 PM EST for a conversation with the fascinating Heather Green. You can read her story here. A former singer, model, and interior designer, Heather embarked on a new career when her diagnosis with FSHD forced her to reassess her future. Childhood
- [What's in a name?](https://www.fshdsociety.org/2019/08/16/whats-in-a-name/) - We’re now the FSHD Society Discerning readers will notice that we have changed our name and logo to align with how the rest of the world abbreviates facioscapulohumeral muscular dystrophy. This is not simply an exercise in trendiness. When we were the FSH Society, we led the charge for using “FSHD,” providing a single, consistent
- [Fulcrum Announces Initiation of ReDUX4, a Phase 2b Clinical Trial of Losmapimod for FSHD](https://www.fshdsociety.org/2019/08/19/fulcrum-announces-initiation-of-redux4-a-phase-2b-clinical-trial-of-losmapimod-for-fshd/) - August 19, 2019 at 7:00 AM EDT From Fulcrum press release. PDF Version CAMBRIDGE, Mass., Aug. 19, 2019 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced it has initiated ReDUX4, a Phase 2b clinical trial of losmapimod in facioscapulohumeral muscular dystrophy (FSHD).
- [Charis Himeda talks about CRISPR and FSHD](https://www.fshdsociety.org/2019/08/21/charis-himeda-talks-about-crispr-and-fshd/) - From the FSHD Society's webinar series on facioscapulohumeral muscular dystrophy. Charis Himeda, PhD, of the University of Nevada Reno, discusses her groundbreaking work showing how CRISPR "gene editing" technology can be used to repress the DUX4 gene implicated in FSHD, and answers questions from the audience. Check out her video below. If you have further
- [First Meeting of FSHD Israel](https://www.fshdsociety.org/2019/08/22/first-meeting-of-fshd-israel/) - by Haviva Ner-David This past August 9th was the first official meeting of FSHD Israel, initiated by my 18-year-old daughter Hallel after we represented Israel in the first International FSHD Conference in Marseille in June. We were an intimate group of twelve – some FSHDers (including myself) and some our partners and/or care takers –
- [FSHD Society signs agreement to expand CTRN](https://www.fshdsociety.org/2019/08/28/fshd-society-signs-agreement-to-expand-ctrn/) - From PRWeb The FSHD Society announced today that it has signed a memorandum of understanding to enter into a three-year agreement to enable the expansion of the international facioscapulohumeral muscular dystrophy (FSHD) Clinical Trial Research Network (CTRN). FSHD is a hereditary muscle-damaging condition that affects an estimated one out of 8,000 people, or nearly one million men, women,
- [Webinar: CBD and medical marijuana](https://www.fshdsociety.org/2019/09/04/webinar-about-cbd-and-medical-marijuana/) - Our next webinar, scheduled for Wednesday, September 11, from noon to 1 PM EST, addresses a topic that is much discussed in our Facebook communities: cannabidiol (CBD) and medical marijuana. With the spread of legalized medical marijuana and the passage of the 2018 Farm Bill that made CBD legal in all 50 states, it’s
- [Mika Mae's story](https://www.fshdsociety.org/2019/09/12/mika-maes-story/) - Editor’s note: Mika Mae Jones passed away in June 20, 2019, at age 32 after sustaining severe head trauma from a fall. The FSHD community mourns her tragic loss. She wrote this essay for us shortly before her death. We publish it in her honor and memory. With fellow FSHDer, Alexandrea Comstock, Mika Mae co-founded
- [Disappointing news from Acceleron](https://www.fshdsociety.org/2019/09/16/disappointing-news-from-acceleron/) - From Acceleron's press release Acceleron Pharma Inc. (NASDAQ:XLRN), a leading biopharmaceutical company in the discovery and development of TGF-beta superfamily therapeutics to treat serious and rare diseases, today announced that treatment with ACE-083 in patients with facioscapulohumeral muscular dystrophy (FSHD) did not achieve functional secondary endpoints in the Phase 2 trial. Although ACE-083 demonstrated a robust,
- [Dyne Therapeutics to support ReSolve study of FSHD](https://www.fshdsociety.org/2019/09/23/dyne-therapeutics-to-support-resolve-study-of-fshd/) - From BusinessWire Dyne Therapeutics, a biotechnology company pioneering targeted therapies for patients with serious muscle diseases, today announced its support for the ReSolve study, an ongoing natural history study designed to inform the development of therapies for facioscapulohumeral muscular dystrophy (FSHD). ReSolve (Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD) is an observational study run
- [FSHD Society Announces 2020 Conferences](https://www.fshdsociety.org/2019/09/25/fshd-society-announces-2020-conferences/) - The nation’s capital will host the world’s premier conferences on facioscapulohumeral muscular dystrophy for all stakeholders. REGISTER HERE. The FSHD Society's 27th annual International Research Congress (IRC) will be held on June 25-26, 2020, at the Washington Hilton in Washington, DC. It will be followed on June 27-28 by FSHD Connect, the Society’s biennial global
- [Fulcrum Announced Results of Phase 1 Clinical Trial of Losmapimod](https://www.fshdsociety.org/2019/10/04/fulcrum-announced-results-of-phase-1-clinical-trial-of-losmapimod/) - Data presented in an oral presentation at World Muscle Society meeting highlighted safety, tolerability, pharmacokinetics and target engagement of losmapimod in patients with facioscapulohumeral dystrophy. CAMBRIDGE, Mass., Oct. 04, 2019 (GLOBE NEWSWIRE) -- Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of patients with genetically defined rare diseases, today announced preliminary
- [FSHD Gene May Help Tumors Evade the Immune System](https://www.fshdsociety.org/2019/10/07/fshd-gene-may-help-tumors-evade-the-immune-system/) - BY ALEXANDRA BELAYEW, MONS, BELGIUM DUX4, the gene that plays a key role in facioscapulohumeral muscular dystrophy (FSHD), is gaining unexpected notoriety in cancer research. According to a recent study1 from the Fred Hutchinson Cancer Research Center in Seattle, Washington, gene mutations in tumor cells can cause a re-expression of DUX4 in malignant tissues. What’s
- [New genetic test being developed for FSHD](https://www.fshdsociety.org/2019/10/16/new-genetic-test-for-fshd/) - From Globe Newswire Bionano Genomics, Inc. (NASDAQ: BNGO), a life sciences instrumentation company that develops and markets the Saphyr® system, a genome imaging platform for ultra-sensitive and ultra-specific genome-wide structural variation detection, today announced that leading organizations, including PerkinElmer Genomics and the University of Iowa, have adopted Saphyr for use in their clinical genomics laboratories.
- [A coloring book for the mobility challenged](https://www.fshdsociety.org/2019/10/17/a-coloring-book-for-the-mobility-challenged/) - Coloring books are no longer just for kids. They are a hot trend for adults who find that coloring between the lines is a relaxing, creative outlet in our ever-more frenzied times. Artist Tiffany Zimmerman, who is always seeking to expand her horizons, decided to design one for people like herself who depend on a
- [Meet Dan Levy of Schitt’s Creek!](https://www.fshdsociety.org/2019/10/24/meet-dan-levy-at-schitts-creek/) - Big news! We’ve teamed up with the online fundraising platform Omaze to give you the chance to meet Dan Levy, of Schitt's Creek. Dan is the co-creator and star of the hit comedy series, a 2019 Prime Time Emmy award multi-nominee including Outstanding Comedy Series. Donate through Omaze for chances to win a VIP trip
- [HAT Trick to Block the DUX4 Gene](https://www.fshdsociety.org/2019/10/24/dux4-hat-trick/) - Researchers Identify a New Compound that Inhibits the Activity of DUX4 By Alec DeSimone, PhD University of Massachusetts Medical School Led by a team at the University of Minnesota, Minneapolis, researchers have identified a new compound that inhibits the activity of DUX4, implicated as the root cause of facioscapulohumeral muscular dystrophy (FSHD). The compound provides
- [Activate! NFL Films' Alan Brown](https://www.fshdsociety.org/2019/10/27/activate-nfl-films-alan-brown/) - Join host Tim Hollenback this Wednesday, October 30, at 9:00 pm ET on Facebook Live for a conversation with the fantastic Alan Brown. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League (NFL).
- [Los Angeles Walk & Roll to Cure FSHD makes the news](https://www.fshdsociety.org/2019/11/06/los-angeles-walk-roll-to-cure-fshd-makes-the-news/) - https://youtu.be/nhnPOcQji7Q?t=372 Our inaugural Los Angeles Walk & Roll to Cure FSHD made the local TV news in Torrance, CA, this week! The event was organized by the Los Angeles chapter of the FSHD Society. Bravo to Walk leader Selina Lai for her energetic networking and advocacy to raise awareness of FSH muscular dystrophy with the
- [miRecule, Inc., is developing a novel treatment for FSHD](https://www.fshdsociety.org/2019/11/08/mirecule-inc-is-developing-a-novel-treatment-for-fshd/) - In their offices in Maryland, just northwest of Washington, DC, miRecule Inc. and its founder Anthony Saleh, PhD, are hard at work developing a novel treatment for FSHD. In the early 2000s, Saleh was a graduate student at Johns Hopkins School of Public Health in Baltimore, Maryland, working on a new class of drugs known
- [The 2019 Year-End Report](https://www.fshdsociety.org/2019/11/12/the-2019-year-end-report/) - This year, the FSHD Society – empowered by you – launched an aggressive plan to accelerate therapeutic development for FSHD. We brought together pharmaceutical companies, researchers, government agencies, and families in a working collaborative with the goal of delivering disease-modifying therapies by 2025. Your support, activity, perseverance, and faithfulness has allowed us to be here,
- [Double Your Donation... Easily and Free!](https://www.fshdsociety.org/2017/04/12/double-donation-easily-free-2/) - Corporate Matching Gifts: Does Your Company Match Your Donation? Did you know many companies offer a matching gift program to encourage philanthropy among their employees? And that some companies will even match to spouses, retirees, and board members? By simply completing the matching gift form from your employer, you may be able to double, or even
- [A new, improved CRISPR-Cas9 technology](https://www.fshdsociety.org/2019/11/16/new-version-of-crispr-cas9/) - By Angela Lek, PhD Yale University The discovery of CRISPR-Cas9 gene-editing technology has undoubtedly revolutionized the field of human genetics, enabling for the first time in human history the ability to target disease-causing mutations in our DNA--the root cause of genetic diseases. Now a new, improved version of CRISPR-Cas9 has been developed
- [Finding strength in our pain](https://www.fshdsociety.org/2019/11/21/finding-strength-in-our-pain/) - The suffering that FSHD has caused has also made us stronger people By Meredith Huml Angier, North Carolina The words “no cure” and “no treatment” were dropped casually into my lap after much prodding and poking and examination on the day I was diagnosed with a disease I’d never heard of. I was 12
- [The Future is Now for Natural History Studies](https://www.fshdsociety.org/2019/11/25/the-future-is-now-for-natural-history-studies/) - Here’s what keeps us up at night: researchers will find a drug that actually works, and yet without understanding the natural history of the disease, they can't prove the drug is what made the difference. Therefore, the drug efficacy is difficult to prove to the FDA. The very first question a drug company asks when
- [#GivingTuesday Telethon](https://www.fshdsociety.org/2019/11/26/givingtuesday-telethon/) - #GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 3, and we are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to
- [I thought I would never find happiness ever again](https://www.fshdsociety.org/2019/12/08/i-thought-i-would-never-find-happiness-ever-again/) - BY KRISTIN ZWICKAU CHARLESTOWN, MASSACHUSETTS It was October 2017. I thought I would never find happiness ever again following our daughter’s diagnosis of FSHD. She was six at the time, and we had never heard of the disease before. Now it is a part of our everyday life. It was overwhelming. During the early days
- [It's Time To Act: Take our Genetic Test Survey](https://www.fshdsociety.org/2019/12/12/its-time-to-act-take-our-genetic-test-survey/) - We are entering a time of great hope for individuals with FSH muscular dystrophy, as new treatment approaches target the root genetic cause of the disease. But this means that people will need a genetic test for FSHD in order to participate in clinical trials and to be prescribed these treatments (once they get approved
- [Listen to our Giving Tuesday Interviews](https://www.fshdsociety.org/2019/12/14/telethon/) - You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment
- [AFOs with a sparkly dress](https://www.fshdsociety.org/2019/12/23/afos-with-a-sparkly-dress/) - BY ALEXANDREA COMSTOCK LETHBRIDGE, ALBERTA, CANADA I grew up not knowing what was wrong with me as I faced the consequences of what I eventually learned was early-onset FSHD. I had foot drop. I couldn’t close my eyes. I had severe scapular winging, scoliosis, and lordosis. People called me “duck” and would quack at me.
- [FSHD goes to school](https://www.fshdsociety.org/2020/01/10/fshd-goes-to-school/) - by Kristin Zwickau New England Chapter Director Having a child diagnosed with a complex, serious disease that causes disabilities is a very hard reality for parents to deal with, let alone for the child who faces it day in and day out. Our daughter, who was diagnosed at the age of 6, is mobile, but
- [Fulcrum's approach to treating FSH muscular dystrophy [VIDEO]](https://www.fshdsociety.org/2020/01/13/fulcrums-approach-to-treating-fsh-muscular-dystrophy-video/) - In this video, Michelle Mellion, MD, medical director at Fulcrum Therapeutics, discusses the Cambridge biotech's approach to treating facioscapulohumeral muscular dystrophy. She describes the company's scientific research to develop "FSHD in a dish" models to screen and identify candidate drugs that can suppress the expression of DUX4, the gene thought to be the trigger for
- [A treatment is out there](https://www.fshdsociety.org/2018/12/19/a-treatment-is-out-there/) - "Our mom will always be a superhero in our eyes." Ever since we can remember, our mom has told us that she has "special muscles." When we were younger, we thought this meant that she was a superhero, and her special muscles were her superpower. As we've gotten older, we now know that her special
- [FSHD Connect is a game changer](https://www.fshdsociety.org/2020/02/19/fshd-connect-is-a-game-changer/) - by Jennifer Egert, PhD, New York City After being involved with the FSHD Society for more than 10 years, participating in fundraisers, social media, and events, I finally made it to the FSHD Connect meeting in 2018 in Las Vegas. It's sort of ridiculous that I hadn’t gone until then, especially when the Society is
- [We Are Not Alone](https://www.fshdsociety.org/2020/01/03/walk-roll-to-cure-fshd/) - BY DAVE LUKAS CRYSTAL LAKE, ILLINOIS The inaugural Chicagoland Walk & Roll to Cure FSHD exceeded every expectation and goal I had. What an amazing day filled with family, community, music, great food, fun, and picture-perfect weather! We had 230 walkers (my goal was 150). We raised $43,301 (my goal was $25,000). But more than
- ["It's Time For a Cure" - Our new PSA](https://www.fshdsociety.org/2013/10/16/its-time-for-a-cure-our-new-psa/) - Check out our newest public service announcement, created by the American Movie Company and premiered at our annual benefit concert at the New York Botanical Garden. This year's PSA features event co-chair Beth Johnston and her family, scientists Peter and Takako Jones, and former Glee star Max Adler. We encourage you to share this YouTube
- [Patient-Focused Drug Development Meeting for FSHD](https://www.fshdsociety.org/2019/10/23/patient-focused-drug-development-on-fshd/) - The FSHD Society announced today that the U.S. Food and Drug Administration (FDA) has approved its application to hold an externally led Patient-Focused Drug Development (EL-PFDD) meeting on facioscapulohumeral muscular dystrophy. This "voice of the patient" meeting, a key component of the Society’s Therapeutic Accelerator initiative, has been scheduled for April 21, 2020, in College
- [Progress Report on Therapeutic Accelerator for FSHD](https://www.fshdsociety.org/2019/10/29/progress-report-on-therapeutic-accelerator-for-fshd/) - https://www.youtube.com/watch?v=eD_1eNZJeoQ Last week, Mark Stone, the FSHD Society president and CEO, gave his fourth-quarter progress report on the Therapeutic Accelerator for FSHD treatments. His presentation was given via webinar to leadership donors and key volunteers, including chapter directors and Walk & Roll leaders. The recorded talk and Q&A are now available on the FSHD Society's
- [Recent FSHD research publications](https://www.fshdsociety.org/2017/12/02/recent-fshd-research-publications/) - Notable findings and advances from the past six months by DANIEL PAUL PEREZ Chief Science Officer, FSH Society Asterisk denotes FSH Society funding acknowledged in paper. “Conservation and innovation in the DUX4-family gene network,” from the laboratory of Stephen J. Tapscott at the Fred Hutchinson Cancer Center in Seattle, Washington (Whiddon et al. Nat Genet.
- [Video: Molecular therapy for FSH muscular dytrophy](https://www.fshdsociety.org/2017/12/18/video-molecular-therapy-fsh-muscular-dytrophy/) - https://www.youtube.com/watch?v=GrB7UdFtUWQ In this FSH Society webinar, Scott Q. Harper, PhD, of Nationwide Children's Research Institute describes FSHD genetics and explains how gene and molecular therapy could be used to block the genetic mechanism that is thought to cause muscle degeneration in facioscapulohumeral muscular dystrophy. The talk is very understandable to non-scientists and conveys the real
- [We bring people together to fight FSH muscular dystrophy](https://www.fshdsociety.org/2017/12/20/bring-people-together-fight-fsh-muscular-dystrophy/) - https://www.youtube.com/watch?v=sWs6PCvBX7Q The FSH Society connects patients like Katie Ruekert to a community of support so no one has to face this disease alone. We also work closely with thought leaders like Jeffrey Statland, MD, to connect research centers with one another to form a clinical trial research network, which is vital to the future of
- [Facio selects first series of potential drug development candidates](https://www.fshdsociety.org/2018/01/19/facio-selects-first-series-potential-drug-development-candidates/) - We are sharing this news release from Facio, the Netherlands-based biotech founded by FSHD advocates and business leaders with the sole mission of developing treatments for FSHD. In this story, Facio announces that it has identified drug-like molecules that show promise in repressing DUX4, the gene believed to be a key driver of the disease.
- [Placing a BET on blocking DUX4](https://www.fshdsociety.org/2017/11/18/placing-bet-blocking-dux4/) - by FRAN SVERDRUP, PHD St. Louis, Missouri DUX4 is considered to be a key cause of muscle degeneration in FSH muscular dystrophy. This is why we are interested in finding drugs that “turn off” the production of DUX4, which would prevent the many detrimental activities of this toxic protein. Such drugs would potentially provide the
- [#GivingTuesday 2017 is Just Around the Corner!](https://www.fshdsociety.org/2017/11/20/givingtuesday-2017-just-around-corner/) - Join us on Tuesday, November 28th, 2017 as we participate in the 6th annual #GivingTuesday! #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities
- [Thank you](https://www.fshdsociety.org/2017/11/22/thank-you-3/) - It is because of your donations and support that we are advancing towards treatments and healthier lives for everyone with FSH muscular dystrophy. This Thanksgiving, we are grateful for you and the difference you are making in countless lives. With gratitude from the FSH Society Team,
- [Double your impact this #GivingTuesday](https://www.fshdsociety.org/2017/11/22/double-impact-givingtuesday/) - We're excited to announce that your donation on Tuesday, November 28, will be eligible for matching gifts! Here's how: Donate through Facebook. On #GivingTuesday, Facebook and The Bill & Melinda Gates Foundation will be matching up to $2 million of funds raised for US nonprofits through Facebook's charitable giving tools. Donations can be matched up
- [An undeniable sense of optimism](https://www.fshdsociety.org/2017/11/30/undeniable-sense-optimism/) - https://www.youtube.com/watch?v=3TAkOvt3Wmo In this interview, Dr. Jeffery Statland of the University of Kansas Medical Center explains how FSH Society funding seeded the creation of the seven-site Clinical Trial Research Network (CTRN), which in turn led to the largest clinical trial preparedness study that has ever been run in the United States. We have entered a convergence
- [Blazing a Trail to the Future](https://www.fshdsociety.org/2017/12/01/blazing-trail-future/) - You inspire me! You have faithfully supported, worked, and engaged your network and loved ones to join our quest for treatments and a cure for FSHD. I want to acknowledge our deep appreciation for your past support and generosity. Many of the advancements of this year would not have been possible without you. It has
- [Not Your Mother's Yarn](https://www.fshdsociety.org/2017/10/04/not-mothers-yarn/) - FSH member Kathy Senecal will be fundraising for the FSH Society in the coming months at four different craft fairs through her business, Not Your Mother's Yarn. 100% of the net proceeds will be donated to the FSH Society. Kathy offers a large selection of hand-spun yarns, as well as hats, snoods, fingerless gloves, and
- [An FSHD Antisense Therapy Primer](https://www.fshdsociety.org/2017/10/06/fshd-antisense-therapy-primer/) - Q&A With Dr. Yi-Wen Chen by JIM ALBERT, Eldersburg, Maryland Antisense therapy is a form of treatment for genetic disorders. In the past year antisense drugs have been approved by the FDA for the treatment of two types of muscular dystrophies: some forms of Duchenne muscular dystrophy, and spinal muscular atrophy. While antisense therapy for the
- [Carden Wyckoff elected to Board of Directors](https://www.fshdsociety.org/2017/10/10/carden-wyckoff-elected-board-directors/) - Youngest member, with a passion for advocacy and fundraising The FSH Society is pleased to announce that Carden Wyckoff was elected to serve on the Board of Directors on September 26, 2017. In joining the Board just two years after graduating from college, she becomes the youngest director in the history of the Society. Carden
- [Testosterone and human growth hormone clinical trial for FSHD](https://www.fshdsociety.org/2017/10/17/testosterone-human-growth-hormone-clinical-trial-fshd/) - UPDATED October 30, 2017 Researchers at the University of Rochester in New York are conducting a research study to learn more about a potential symptomatic therapy for FSHD. This study may help determine if a combination of drugs (recombinant human growth hormone [rHGH] and testosterone) can be safely given to patients with FSHD and possibly
- [Award-winning author Lisa Reinicke author lends her support](https://www.fshdsociety.org/2017/09/01/award-winning-author-lisa-reinicke-author-lends-support/) - Readers of FSH Watch may remember Katie Ruekert's personal story about how she struggled to come to terms with her diagnosis of FSH muscular dystrophy, and how her journey eventually led her to open up about her condition and organize the first Colorado Walk 'n' Roll. Now her story has caught the attention of prize-winning
- [Pappas Family Featured on Fox 25 Boston!](https://www.fshdsociety.org/2017/09/11/pappas-family-featured-fox-25-boston/) - Fox 25 Boston recently shared the Pappas family’s journey with FSHD and youngest member, Lexi Pappas’ touching short documentary. Lexi Pappas of Natick, MA was diagnosed with the disease in grade school. Now a recent college grad, Lexi had shared the story of her mother, grandfather, and great grandfather all affected by the disease via
- [FSH Society Board of Directors Names Mark A. Stone as Next Chief Executive Officer](https://www.fshdsociety.org/2017/09/12/fsh-society-board-directors-names-mark-stone-next-chief-executive-officer/) - Co-founder and Former CEO Daniel Paul Perez to continue with the FSH Society as Chief Science Officer LEXINGTON, Massachusetts – William R. Lewis Sr. M.D., chairman of the Board of Directors of the FSH Society, today announced that Mark A. Stone has been named president and chief executive officer of the 501(c)(3) non-profit after a
- [Anson Calder Adds Orange Wallet to Collection to Benefit FSH Society](https://www.fshdsociety.org/2017/09/13/anson-calder-adds-orange-wallet-collection-benefit-fsh-society/) - Meet the newest addition to the Anson Calder collection: The Cash Wallet in FSHD Orange! In recognition of FSH muscular dystrophy (FSHD), Anson Calder designed the Cash Wallet in the official orange color of World FSHD Day to bring awareness to the disease, and to the FSH Society. A portion of sales are donated back
- [2017 Los Angeles Festive Evening Fundraiser](https://www.fshdsociety.org/2017/09/20/2017-los-angeles-festive-evening-fundraiser/) - Dear Friends of the Ghostly Gala to Vanish FSHD, Thanks to your enthusiastic and generous support, the Ghostly Gala has quickly become a beloved Halloween event, whose impact is being felt in the many important advances being made in FSH muscular dystrophy research. Moving forward, we aim to seriously engage and energize the philanthropic arms
- [Donate your used car or truck and get a tax deduction!](https://www.fshdsociety.org/2017/08/02/donate-your-used-car-or-truck/) - Wondering what to do with your used car or truck? Donating your old vehicle to the FSH Society, is convenient, easy, and may qualify you for a tax deduction. And best of all, your donation of a used car or truck will make a big difference in supporting our mission! Donate your vehicle today! We
- [FSHD Canada awards $20K for FSH Society research grant](https://www.fshdsociety.org/2017/08/04/fshd-canada-awards-20k-fsh-society-research-grant/) - The FSH Society is pleased to announce that it has received a grant of $20,000 from the FSHD Canada Foundation in support of an exciting, treatment-focused project, “Developing LNA-based therapy for facioscapulohumeral muscular dystrophy.” “We are delighted to help Neil Camarta and his colleagues at FSHD Canada help make a huge impact on FSHD by
- ["About FSHD" brochure is now available in Chinese!](https://www.fshdsociety.org/2017/08/10/fshd-brochure-now-available-chinese/) - Thanks to our friend and fellow FSHD advocate in China, Ning Baisheng, our "About FSHD" brochure has been translated and adapted for readers in China. Baisheng says patients in China face the same problems as patients everywhere, as few physicians know about FSH muscular dystrophy. This brochure is a valuable educational tool not just for patients
- [¡El folleto "About FSHD" ya está disponible en español!](https://www.fshdsociety.org/2017/08/14/el-folleto-fshd-ya-esta-disponible-en-espanol/) - Estamos muy contentos de anunciar que About FSHD, nuestro folleto esencial para todos los pacientes, familias, proveedores de atención primaria y otros, ha sido traducido al español. Damos las gracias a Manuel Gómez y al Dr. Alberto Rosa por su generosa ayuda. El folleto está disponible en formato descargable aquí.
- [2017 Festive Evening Stay-at-Home Campaign](https://www.fshdsociety.org/2017/08/20/2017-festive-evening-stay-home-campaign/) - The FSH Society Festive Evening Concert Committee will miss seeing you in person this year. Why we do what we do. FSHD can rob you of your ability to smile. Weaken your legs so you can't step over the threshold of your home. Even breathing can become a struggle. What about the dreams you have for
- [Fourth Annual Songs in the Key of Steven Blier (PHOTOS)](https://www.fshdsociety.org/2017/07/18/fourth-annual-songs-key-steven-blier-photos/) - [ngg_images source="galleries" container_ids="13" display_type="photocrati-nextgen_basic_slideshow" gallery_width="600" gallery_height="400" cycle_effect="fade" cycle_interval="10" show_thumbnail_link="1" thumbnail_link_text="[Show thumbnails]" order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"] We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts
- [Forget Me Knot Fundraiser, Extended until September 15th!!](https://www.fshdsociety.org/2017/07/26/forget-me-knot/) - UPDATED! Thank you to everyone who donated to Michelle's Forget Me Knot fundraising campaign. We didn't quite reach our $50,000 goal, so Michelle has extended the deadline to donate to September 15th!! We are so grateful to Michelle and Dave Mackay's matching gift offer, and for this opportunity for more of us to rise to the challenge!
- [Check out our Orange Slice Selfies Video!](https://www.fshdsociety.org/2017/06/10/check-orange-slice-selfies-video/) - https://www.youtube.com/watch?v=0R60NNvMpjo Check out our brand-new Orange Slice Selfies video to find out how you can join in celebrating World FSHD Day coming up on June 20th! With the help of great supporters, video editors and others, we’ve created this fantastic video to show you how you can spread public awareness of FSH muscular dystrophy with
- [SHIFT Communications wins PCNE Bell Ringer Award for American Ninja Warrior Campaign](https://www.fshdsociety.org/2017/06/14/shift-communications-wins-pcne-bell-ringer-award-american-ninja-warrior-campaign/) - We are proud and honored to announce that our PR/marketing partner SHIFT Communications earned a Publicity Club of New England Bell Ringer Award! A Silver Bell was awarded for our Nonprofit Communications Campaign bringing attention to two of our top ambassadors, Carden and Spencer Wycoff. Spencer participated in NBC’s America Ninja Warrior in June
- [Team FSHD Cycling's RAAM has begun!](https://www.fshdsociety.org/2017/06/17/team-fshd-cyclings-raam-begun/) - DONATE TO HELP TEAM FSHD CYCLING'S CROSS ITS FUNDRAISING FINISH LINE!! We are more proud than we can say to have Team FSHD Cycling embark today on the 3,000-mile Race Across America to raise awareness and funds for our shared mission to beat FSH muscular dystrophy. Thank you to all who raised funds and sent
- [It's officially FSHD Awareness Day in Maryland!](https://www.fshdsociety.org/2017/06/20/officially-fshd-awareness-day-maryland/) - Thank you to Missy Cassidy for submitting the request to the Governor's office! Next year, let's go for proclamations in all 50 states!
- [Team FSHD Cycling crosses the finish line!](https://www.fshdsociety.org/2017/06/25/team-fshd-cycling-crosses-finish-line/) - And here they are, our champions! Team FSHD Cycling at the Race Across America finish line in Annapolis last night! We couldn't be more proud, and humbled, by this incredible feat of planning, grit, athleticism, and heart. The team traversed 3,143.9 miles in eight days, braving blistering desert heat and thunderstorms. On behalf of the
- [Our San Francisco Concert and Patient Meeting is right around the corner!](https://www.fshdsociety.org/2017/06/26/san-francisco-concert-patient-meeting-right-around-corner/) - Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson. Don't miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco's Jewish Cultural Center. This is the Bay Area's premier FSHD networking and advocacy event! Our conference provides an exceptional
- [FY2016 Donor Impact Report is here!](https://www.fshdsociety.org/2017/05/23/4472/) - When my mother, Carol, was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in the late 1950s, she was told she had only five years to live. As appalling as we find this today, knowing that most people with FSHD will live a normal lifespan, back then most physicians knew next to nothing about the condition. Five
- [2018 FSHD Connect Conference registration is now open!](https://www.fshdsociety.org/2018/01/22/2018-fshd-connect-conference-registration-now-open/) - Our community's premier networking event for immersive learning and community building Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading thinkers share the latest in medical management of FSHD and exciting advances toward treatments. Breakout sessions will cover how to cope with practical and emotional
- [FY2017 Donor Report documents a year of change and growth](https://www.fshdsociety.org/2018/02/22/fy2017-donor-report-documents-year-change-growth/) - Download the FY 2017 Donor Report here Amazing! That’s the word that comes to mind when I look back on 2017 and reflect on all that has been accomplished as we’ve worked together. You have volunteered tirelessly and supported generously, allowing us to move closer to our collective goal of better treatments and ultimately a
- [Has the Design for All moment arrived?](https://www.fshdsociety.org/2018/02/23/design-moment-arrived/) - The movement for universal design--clothing, furniture, medical devices, housewares, and architecture that are accessible, beautiful, and nonstigmatizing--is gaining steam, enough to warrant an exhibition at the Cooper Hewitt Smithsonian Design Museum, as reported by the New York Times. These companies and their products deserve support and recognition by our community. We would love to compile
- [Jim Chin elected chair of FSH Society Board of Directors](https://www.fshdsociety.org/2018/03/20/jim-chin-elected-chair-of-fsh-society-board-of-directors/) - During its meeting in February, 2018, the FSH Society's Board of Directors unanimously approved the executive committee’s recommendation for Jim Chin to be our next board chairperson. The vacancy was created by the retirement of William Lewis, Sr., MD, from his position as the Society’s board chair, a role in which he served for the
- [Mark Stone webinar now available](https://www.fshdsociety.org/2018/03/20/mark-stone-webinar-now-available/) - We're very pleased to share the recording of our March 8th webinar with FSH Society President & CEO Mark Stone. In this webinar, Mark shares his experiences over the past six months learning about the FSHD community, and lays out his vision for how the FSH Society will empower families and accelerate the development of
- [Seeking nominations for 2018 FSH Society Community Award](https://www.fshdsociety.org/2018/03/27/seeking-nominations-for-2018-fsh-society-community-award/) - The FSH Society is soliciting nominations for its 2018 Community Award, for an individual or group that has been an outstanding contributor to the FSHD community. Given every two years, the Community Award in 2016 recognized David Housman, chair of the FSH Society's scientific advisory board, and Chris Stenmon, former treasurer and fundraising leader for
- [Pro Golfer Morgan Hoffman's FSHD diagnosis leads him to a higher calling](https://www.fshdsociety.org/2018/04/10/hoffmann/) - Contributed by MORGAN HOFFMANN West Palm Beach, Florida In November 2016, I was diagnosed with muscular dystrophy, an incurable disease. The last few months have been the most trying of my life. I have a new reality now, and a new purpose. In 2011, I started to notice that my right pec was deteriorating. I
- [Intelligent orthotics step forward at the MIT Media Lab](https://www.fshdsociety.org/2018/04/23/intelligent-orthotics-step-forward-at-the-mit-media-lab/) - During the 2014 biennial FSHD patient conference in Boston, the FSH Society arranged for a group to visit the MIT Media Laboratory, where Professor Hugh Herr leads a visionary team developing prostheses powered by robotics and artificial intelligence. We knew not only that our members would be fascinated by the research but we also wanted
- [ACE-083 Phase 2 trial results presented at AAN conference](https://www.fshdsociety.org/2018/04/26/ace-083-phase-2-trial-results-presented-at-aan-conference/) - Preliminary results from the ongoing phase 2 clinical trial of ACE-083 in FSHD patients were presented today at the American Academy of Neurology 70th Annual Meeting in Los Angeles, California.The oral presentation by Jeffery Statland, MD, of the University of Kansas Medical Center, included preliminary findings from cohorts 1 and 2 in the open-label, dose
- [A new tool for measuring disease burden in FSH muscular dystrophy](https://www.fshdsociety.org/2018/05/05/a-new-tool-for-measuring-disease-burden-in-fsh-muscular-dystrophy/) - by Amanda Hill, Denver, Colorado FSHD clinical researchers recently published what may soon become a standard battery of assessments for use in clinical trials, an exciting and essential milestone for the development of FSHD therapies. The combined assessments are altogether called a “composite outcome measure” (COM) and are designed to more fully capture changes in
- [DUX may be a master switch of the genome](https://www.fshdsociety.org/2018/05/17/dux-may-be-a-master-switch-of-the-genome/) - The DUX4 gene in FSH muscular dystrophy is typically described as a rogue actor, a genetic oddball that is never supposed to be active in adult muscle, and is rendered harmless by an elaborate lockdown system. It is only when several parts of the “lock” mechanism break that DUX4 emerges to cause damage to muscles.
- [Walk Pioneers Lead the Way!](https://www.fshdsociety.org/2018/05/30/walk-pioneers/) - This September and early October, the FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast. These Volunteer Leaders are paving the way for their communities to raise funds and increase awareness! 5 Brave Walk Pioneers have agreed to attend monthly training sessions, beta-test
- [FDA orphan drug designation for Genea Biocells' FSHD drug candidate](https://www.fshdsociety.org/2018/05/31/fda-orphan-drug-designation-for-genea-biocells-fshd-drug-candidate/) - Genea Biocells, a San Diego-based biotech company focused on drug development to treat neuromuscular diseases, today announced that it has been granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for its therapeutic candidate, GBC0905, for the treatment of facioscapulohumeral muscular dystrophy (FSHD). Scientists from Genea Biocells will be attending the FSH
- [FSH Society launches national chapter program. Are you in?](https://www.fshdsociety.org/2018/07/06/are-you-in/) - https://www.youtube.com/watch?v=oMQ13pElUXY There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone. That’s what the FSH Society Chapter Program is all about! Led by volunteers and supported by FSH Society
- [DUX4-suppressing therapies are nearing the clinic](https://www.fshdsociety.org/2018/07/20/dux4-suppressing-therapies-are-nearing-the-clinic/) - https://www.youtube.com/watch?v=yZJKOntIU10 From our 2018 FSHD Connect conference, researchers present their work on therapies to suppress the toxic DUX4 gene. Two companies may be going into clinical trials in 2019. This is why it's critically important to ramp up your support for our FSHD Therapeutics initiative, AND enroll in key studies such as the Clinical Trial Readiness
- [UC Irvine recruiting volunteers for study](https://www.fshdsociety.org/2018/07/26/uc-irvine-recruiting-volunteers-for-study/) - Volunteers who are 18 to 55 years of age with FSHD are needed for a study to evaluate functional mobility. The principal investigator is Jay Han, MD, of the University of California Irvine Department of Physical Medicine and Rehabilitation. The purpose of the study is to investigate a new method to measure functional mobility in
- [Study uncovers new proteins involved in regulating FSHD-linked gene](https://www.fshdsociety.org/2018/07/31/study-uncovers-new-proteins-involved-in-regulating-fshd-linked-gene/) - By Rachel Tompa / Fred Hutch News Service A new study has revealed more players in the pathway of facioscapulohumeral muscular dystrophy, or FSHD, the most common form of muscular dystrophy. Led by Fred Hutchinson Cancer Research Center biologist Dr. Stephen Tapscott and staff scientist Dr. Amy Campbell, the study, published today in the journal eLife, is the
- [An update on early-onset FSHD](https://www.fshdsociety.org/2018/08/24/an-update-on-early-onset-fshd/) - A review of published studies to improve our understanding by Amanda Hill, Highlands Ranch, Colorado As many as 20 percent of patients with FSHD have an “infantile” or “early-onset” form, which is generally understood to be more severe and more quickly progressing than typical FSHD. Historically, the criteria that have been used to define early-onset FSHD
- [2017 RAAM Kickoff Dinner](https://www.fshdsociety.org/2017/03/22/2017-raam-kickoff-dinner/) - Race Across America fundraising for FSH muscular dystrophy June 15, 2017 from 4:00 - 7:00 pm Urge Gastropub & Whiskey Bank 2002 S Coast Hwy, Oceanside, CA 92054 Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download
- [Why I made the FSH Society a beneficiary in my will](https://www.fshdsociety.org/2018/08/30/why-i-made-the-fsh-society-a-beneficiary-in-my-will/) - Because if not us, then who? by Deborah Schwartz, New York City I was clinically diagnosed with FSHD two years before the FSH Society came into being. Mine is a spontaneous mutation. I always had winged shoulder blades and rounded shoulders, and had started falling. As I knew no one who had this and there was
- [Mom and Daughter with FSHD featured in Muscular Dystrophy News!](https://www.fshdsociety.org/2017/03/29/mom-daughter-fshd-featured-muscular-dystrophy-news/) - Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD. Diane is Lexi's mother and the two live in Massachusetts. Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness:
- [FSH Society Talk Radio launches first episode](https://www.fshdsociety.org/2017/04/01/fsh-society-talk-radio-launches-first-episode/) - We have launched a new service for our members, an internet radio show that will feature guest interviews and live on-air Q&A with our listeners. Hosted by Tim Hollenback, the show will stream live over BlogTalkRadio on the last Wednesday of every month, at 9:00 pm EST / 8:00 pm CST.Listeners can call into the
- [Update on Clinical Trial A083-02: a Phase 2 Clinical Study of ACE-083 in FSHD](https://www.fshdsociety.org/2017/04/03/update-clinical-trial-a083-02-phase-2-clinical-study-ace-083-fshd/) - The FSH Society has a long history of partnering with biotech and pharmaceutical companies to facilitate recruitment of patients and families for focus groups, provide patient input to clinical outcome measures, and participation in clinical trials. The Society also assists companies by providing connections, insights and scientific information in the research, therapeutic and clinical areas.
- [FSH Society launches national chapter program](https://www.fshdsociety.org/2018/09/04/fsh-society-launches-national-chapter-program/) - Today, The FSH Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), announced the launch of its national chapter development program to provide the opportunity to fund more research, connect with more patients, and speed up progress toward treatments and a cure for FSHD. FSHD is among the most prevalent of the nine
- [Barbara Chin leaves an enduring legacy](https://www.fshdsociety.org/2017/02/23/barbara-chin-leaves-enduring-legacy/) - We at the FSH Society were deeply moved and inspired to receive yesterday a magnificent bequest of $50,000 from the Barbara A. Chin Trust. This gift will enable the Society to fund work that Barbara cared deeply about: education and support for people with FSH muscular dystrophy, like herself and her late son Jimmie, and research
- [Rare Disease Day at NIH](https://www.fshdsociety.org/2017/03/03/rare-disease-day-nih/) - Frank Kolakowski and Manuel Gomez, FSHD advocates extraordinaire, were on hand to represent FSH muscular dystrophy at this year's National Institutes of Health Rare Disease Day event. Thank you!
- [Get our new Bach 2 Bowie T-shirt!](https://www.fshdsociety.org/2017/03/10/get-new-bach-2-bowie-t-shirt/) - Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular dystrophy, one of the most common hereditary muscle-weakening diseases. Just as music unites us, so does our care and concern for the health and well
- [New Source for FSH Muscular Dystrophy Family Cell Lines](https://www.fshdsociety.org/2017/01/31/new-source-fsh-muscular-dystrophy-family-cell-lines/) - Cell Lines to be made available through the NIGMS Human Genetic Cell Repository, sponsored by the National Institute of General Medical Sciences at Coriell Institute for Medical Research (From PRWeb) The FSH Society, the Massachusetts-based non-profit and global leader in the quest to understand and treat facioscapulohumeral muscular dystrophy (FSHD), today announced the publication of an
- [Sacramento meeting report](https://www.fshdsociety.org/2017/02/09/sacramento-meeting-report/) - About 12 members of the Sacramento FSH Society Support Group met at Mimi's Café on February 8th. We had a new attendee who moved from Monterey and had never met another person with FSHD until a few years ago when she met the daughter's of the FSH Society president. Chris Ford was in attendance and
- [A tunable FSHD-like DUX4 mouse model](https://www.fshdsociety.org/2017/02/13/tunable-fshd-like-dux4-mouse-model/) - by Peter Jones, PhD, and Takako Jones, PhD, University of Nevada, Reno The aberrant expression of the DUX4 primate retrotransposon is the key mediator of all forms of FSHD. Thus, the DUX4-fl mRNA and protein are prime targets for therapeutic intervention. Our laboratory at the University of Nevada, Reno School of Medicine reports the successful
- [Promising FSHD mouse model from Harper lab](https://www.fshdsociety.org/2017/02/14/promising-fshd-mouse-model-harper-lab/) - Video caption: These mice are siblings and genetically identical. In the one on the right, we turned DUX4 "on", while in the one on the left, the DUX4 gene remained "off". FSHD mice have a slow and unsteady gait caused by weakened muscles. You may also notice a hunched back, which is also a sign
- [Looking Back on A Year Full of Strength, Part 2](https://www.fshdsociety.org/2016/12/19/looking-back-year-full-strength-part-2/) - As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from
- [Looking Back on a Year Full of Strength, Part 3 of 3](https://www.fshdsociety.org/2016/12/26/looking-back-year-full-strength-part-3-3/) - As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1
- [Acceleron adds 2 new sites for ACE-083 clinical trial](https://www.fshdsociety.org/2017/01/30/acceleron-adds-2-new-sites-ace-083-clinical-trial/) - Cambridge, Massachusetts-based Acceleron Pharma, Inc., is now recruiting adults with FSH muscular dystrophy for a Phase 2 clinical trial of ACE-083 at sites in Kansas City, KS, and Rochester, NY, in addition to St. Louis, MO. For more information, visit our page "Find a Clinical Study." Correction: In our email alert, we mentioned Cleveland, OH,
- [UMass study seeks volunteers](https://www.fshdsociety.org/2018/10/01/umass-study-seeks-volunteers/) - Physicians and researchers at the University of Massachusetts Medical School (UMMS) seek individuals with facioscapulohumeral muscular dystrophy (FSHD) to participate in an FSHD Biomarker Study. This will be conducted by Dr. Robert H. Brown, Jr. and Lawrence J. Hayward, M.D., Ph.D. This study focuses on explaining the variability of FSHD, especially within the same families,
- [FSH Society receives its 9th 4-star Charity Navigator rating](https://www.fshdsociety.org/2016/12/01/fsh-society-receives-9th-4-star/) - We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating! We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH
- [It's enrollment time for Combined Federal Campaign](https://www.fshdsociety.org/2018/10/02/its-enrollment-time-for-combined-federal-campaign/) - Anyone employed by the federal government can make donations to the FSH Society through the Combined Federal Campaign. Please encourage family and friends who qualify to include the FSH Society as a charity they support. Official Solicitation Period is September 10, 2018 - January 11, 2019. Here's how to enroll: Login / Sign Up on
- [2015-2016YTD Donor impact report. 25 years of transformation](https://www.fshdsociety.org/2016/12/09/2015-2016ytd-donor-impact-report-25-years-transformation/) - Our 2015-2016YTD Donor Impact Report is out! We urge you to read it to appreciate the incredible impact your support has had, and will continue to have into the future. Our President and CEO reflects on the changes he has seen in his letter to our members: I feel honored and privileged to receive this award
- [Mid-Atlantic FSHD Family Day presentations](https://www.fshdsociety.org/2018/10/03/mid-atlantic-fshd-family-day-presentations/) - Attendees at our FSHD Family Day conference in Baltimore this past Sunday enjoyed an excellent series of talks by the clinicians and researchers at the Kennedy Krieger Institute. Here are their slides (pdf). Living with FSHD by Kathryn Wagner FSHD Genetics by Julie Cohen FSHD Activity and Exercise Whole-body MRI by Doris Leung Clinical Research
- [Looking Back on A Year Full of Strength](https://www.fshdsociety.org/2016/12/11/looking-back-on-a-year-full-of-strength/) - As we look back on the incredible year we have had, we want to acknowledge those who have shared their inspirational stories, strength and commitment to continue to do the things that they love. Throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t
- [Talk radio: Skylar Conover, Ms Wheelchair USA](https://www.fshdsociety.org/2018/10/12/talk-radio-skylar-conover-ms-wheelchair-usa-2/) - Skylar Conover is excited about acquiring a service dog and will be talking about the experience as she joins Tim Hollenback on Thursday, November 1, 2018, for a live interview. As 2015 Ms. Wheelchair USA, Sklyar shared her journey as a young woman diagnosed with FSH muscular dystrophy and has become a national advocate. Since
- [FSHD Connect conference agendas now available!](https://www.fshdsociety.org/2016/11/07/fshd-connect-conference-agendas-now-available/) - The program agendas for our FSHD Connect conferences are now available to download. Please click on the links provided below. We thank our generous sponsors for their support! FSHD Research Connect FSHD Patient Connect
- [#GivingTuesday is Just Around the Corner!](https://www.fshdsociety.org/2016/11/15/givingtuesday-is-just-around-the-corner/) - Join us on Tuesday, November 29, 2016 as we participate in the fifth annual #GivingTuesday! Entering its fifth year, #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year
- [FSH Society will keep an eye on Washington DC](https://www.fshdsociety.org/2016/11/23/fsh-society-will-keep-eye-washington-dc/) - The recent national election, bringing in a new Administration, raises questions and concerns about the future of laws and programs of interest to researchers, patients and caregivers dealing with FSHD. While it is impossible to foresee the possible changes, we want to assure you that the FSH Society will be closely monitoring the impact on
- [Gratitude](https://www.fshdsociety.org/2016/11/23/gratitude/) - The evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society's 25th year. We premiered the
- [The future is in powerful hands: YOURS](https://www.fshdsociety.org/2018/10/25/the-future-is-in-powerful-hands-yours/) - “I have been impressed with the urgency of doing. Knowing is not enough. We must apply. Being willing is not enough. We must do.”―Leonardo da Vinci Throughout 2018, we have made huge strides in the twin pillars of our mission—to accelerate therapies while empowering families. Thanks to your steadfast support, we launched our chapter program to
- [FSH Society honors leaders in science and advocacy](https://www.fshdsociety.org/2016/11/28/fsh-society-honors-leaders-science-advocacy/) - On November 11, the FSH Society honored four distinguished researchers and community members at its inaugural CureFSHD National Gala in Boston, Mass. The event, hosted by WBUR’s Morning Edition Host Bob Oakes, celebrated 25 years of progress toward finding a cure for Facioscapulohumeral Muscular Dystrophy (FSHD). The gala, which attracted more than 250 researchers, scientists,
- [Ghostly Gala laughter for a cure](https://www.fshdsociety.org/2018/10/28/ghostly-gala-laughter-for-a-cure/) - Our 2018 Ghostly Gala, held on October 21 at Los Angeles' fabled Cicada Club, raised awareness and funds for FSH muscular dystrophy. This year's theme was comedy, laughing for a cure. Wendy Liebman presided as the mistress of ceremonies. She has appeared on Letterman, Leno, Kimmel, Fallon, HBO, and America’s Got Talent. She currently produces
- [Fruit fly model of FSHD is now available](https://www.fshdsociety.org/2016/10/10/fruit-fly-model-fshd-now-available/) - The laboratory of Peter Jones at the University of Massachusetts Medical School reports that Drosophila (fruit fly) lines for studying DUX4 and FRG1 overexpression are freely available worldwide from the Bloomington Drosophila Stock center under “Genes of interest for muscular dystrophy.” The Jones lab writes: “Aberrant expression of the DUX4-fl gene, which encodes a paired homeobox
- [Tune in to our Ghostly Gala 2 Livestream](https://www.fshdsociety.org/2016/10/27/tune-ghostly-gala-2-livestream/) - On Sunday, October 30th, Griff Entertainment will provide the first-ever livestream for the FSH Society’s second annual Ghostly Gala to Vanish FSHD. The gala will be held at the Cicada Club located at 617 Olive Street in downtown Los Angeles, beginning at 5:00 p.m. and ending at 10:00 p.m. Guests who cannot attend the actual
- [Antisense technology muzzles DUX4](https://www.fshdsociety.org/2016/09/24/antisense-technology-muzzles-dux4/) - The cause of facioscapulohumeral muscular dystrophy (FSHD) is thought to center on DUX4, a gene that normally is silent in adult skeletal muscle. When DUX4 gets “expressed,” as happens in FSHD, it activates other destructive reactions in muscle cells and causes muscles to degenerate. Suppressing DUX4 is a logical strategy to treat FSHD, and a
- [Walk & Roll to Cure FSHD](https://www.fshdsociety.org/2016/09/27/walk-roll-to-cure-fshd-2/) - The FSH Society's Colorado Committee hosted their first ever local fundraiser on Saturday September 10, 2016 – a 5K WALK & ROLL at Phillip S. Miller Park in beautiful Castle Rock, Colorado! Thanks to all of our participants, sponsors, and donors, we are proud to say we generated nearly $19,000! This slideshow captures what a wonderful day
- [The CFC (Combined Federal Campaign): Pledging to the FSH Society](https://www.fshdsociety.org/2016/10/03/cfc-combined-federal-campaign-pledging-fsh-society/) - If you are a Federal employee, you are most likely aware of the Combined Federal Campaign, or CFC. It is the official workplace giving campaign of the Federal government. Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible nonprofit organizations that provide health and human service benefits throughout the
- [Lexi Pappas' story of filmmaking and FSH muscular dystrophy](https://www.fshdsociety.org/2018/11/03/lexi-pappas-story-of-filmmaking-and-fsh-muscular-dystrophy/) - Filmmaker Taylor Toole takes us inside the world of Lexi Pappas, a fellow documentarian who lives with a condition called facioscapulohumeral muscular dystrophy (FSHD). Last year, Lexi's own documentary about her family's four-generation journey with FSHD, went viral. Learn about the remarkable woman behind the camera. https://www.youtube.com/watch?v=IMTKw7BcNzQ&t=1s
- [2016 Festive Evening of Song - A Stay-at-home Event](https://www.fshdsociety.org/2016/10/05/2016-festive-evening-song-stay-home-event/) - The Festive Evening Concert Committee invites you relax in your most comfortable chair to join us for a stay-at-home concert to benefit the FSH Society. Featuring: Musical favorites accompanied by a delicious wine When: At your leisure Where: Chez vous Attire: Glamorously comfortable For patients, the day they will have a treatment cannot come fast enough. Your
- [The newly redesigned Advocate is here!](https://www.fshdsociety.org/2018/11/07/the-newly-redesigned-advocate-is-here/) - We're proud to announce that the first issue of the FSHD Advocate is available and headed your way! Excited? So are we! Check out some of the highlights of this issue below, or read the full copy here! Inaugural Walk & Roll Campaign: A tremendous success...page 12 FSH Society latest grant awards...page 4 Gene editing
- [Atlanta Kickoff Event October 15th, 2016!](https://www.fshdsociety.org/2016/10/06/atlanta-kickoff-event-october-15th-2016/) - If you live in the Atlanta area, join us for a casual dinner and cocktails as we begin planning our next fundraising event! Thank you to Meredith & Mica Maddry who have agreed to host our get-together at their home: 1423 Lachona Ct. NE Atlanta, GA 30329 SATURDAY, OCT 15th, 2016 at 7PM Please RSVP to
- [DUX4 vs. PAX7–Who’s the fairest one of all?](https://www.fshdsociety.org/2018/11/09/dux4-vs-pax7-whos-the-fairest-one-of-all/) - by Amanda Hill For several years, DUX4 has enjoyed center stage in the yet-unfolding story of facioscapulohumeral muscular dystrophy (FSHD). DUX4 was first identified in 19991, but only in the past five to 10 years have scientists reached consensus about the full underlying genetics of FSHD. Since then, researchers have worked tirelessly to understand how
- [Mouse grows a human muscle](https://www.fshdsociety.org/2016/07/07/mouse-grows-human-muscle/) - With a little zap, transplanted human cells flourish in a mouse By June Kinoshita, FSH Society It’s like something out of Dr. Frankenstein’s underground laboratory, but a University of Maryland Medical School team led by Robert Bloch, PhD, has successfully coaxed human muscle precursor cells to grow and form mature muscle in a mouse. Among
- [Lake Party Thank You Party - Matching Gift Challenge!](https://www.fshdsociety.org/2016/07/11/lake-party-farewell/) - This year marks the final year that Michelle and Dave Mackay will have the Lake Party at their Michigan home, as it has been sold. They will host a thank you party at the Gull Lake Country Club this August 6 for friends who have supported the FSH Society through this event over the past three years. Please join
- [Help put FSHD on TV!](https://www.fshdsociety.org/2016/07/16/help-put-fshd-tv/) - FSH Society public service announcements are available for television broadcast, but we need your help to get stations to actually air them. When stations hear from local viewers, they can be persuaded to take a closer look. With just an hour or two or your time, you can make a huge difference! It’s simple: Just download
- [New FSHD biotech launched with $55 million](https://www.fshdsociety.org/2016/07/19/new-biotech-focus-fshd-therapy/) - From BusinessWire CAMBRIDGE, Mass.--(BUSINESS WIRE)--Third Rock Ventures, LLC today announced the launch of Fulcrum Therapeutics, a company focused on unlocking gene control mechanisms to develop small molecule therapies. Fulcrum will discover and develop small molecules that modulate the on/off control mechanisms that regulate genes. Fulcrum was established with $55 million in Series A financing to
- [Webinar with Stephen Tapscott MD PhD (video)](https://www.fshdsociety.org/2018/11/16/webinar-with-stephen-tapscott-md-phd-video/) - https://www.youtube.com/watch?v=a9YAjVYc1A4 From our webinar on November 7, 2018. Dr. Tapscott, one of the world's leading scientists working on the fundamental understanding of FSH muscular dystrophy, updates us on our understanding of the condition. Magnetic resonance imaging (MRI) data suggest that muscle degeneration begins with local inflammation followed by degenerative changes ("fatty infiltration") in a muscle.
- [2016 FSHD Connect Conference](https://www.fshdsociety.org/2016/08/20/2016-fshd-connect-conference-2/) - Register at the following links: Research Connect Patient Connect CureFSHD Gala This year, for the first time, we have combined our two signature meetings into FSHD Connect, a single, three-day super-conference. Our events begin on November 10-11 with Research Connect (formerly the International Research Consortium Workshop). Open to active research professionals from around the world,
- [Have you pulled down your oxygen mask?](https://www.fshdsociety.org/2018/11/18/have-you-pulled-down-your-oxygen-mask/) - by SUSAN W. AUMILLER, CLTC, Dublin, Ohio Recently I was sitting next to my husband on a flight to Nevada. I had buckled my seat belt and was casually listening to the flight attendants delivering their safety message. When I heard them say that I should put on my oxygen mask first, before helping the person
- [Raising awareness on highway billboards](https://www.fshdsociety.org/2016/05/04/raising-awareness-highway-billboards/) - The state of Massachusetts has a program through which operators of electronic billboards must donate some space to nonprofits. We were able to obtain space by partnering with the Massachusetts Rehabilitation Commission. Our #CureFSHD billboards are now up and running on some 50+ electronic billboards across the state. If you spot one, please let us
- [Gratitude](https://www.fshdsociety.org/2018/11/22/gratitude-2/)
- [The last one in](https://www.fshdsociety.org/2016/05/06/the-last-one-in/) - Volunteering for research, feeling the weight of responsibility By David Lukas, Village of Lakewood, Illinois I was diagnosed with FSHD in April 2015. In October 2015, I participated a clinical research trial in Rochester, New York, at the University of Rochester Fields Center for FSHD Research. I am the final participant for this study, which
- [Children’s Book Author Belinda Miller Supports the Society through Donations](https://www.fshdsociety.org/2016/06/21/childrens-book-author-belinda-miller-supports-society-donations/) - Belinda Miller is a successful children’s book author who was diagnosed with facioscapulohumeral muscular dystrophy when she was 22 years old. Her diagnosis has not stopped her from doing the one thing she loves most: being an author. Belinda began her career as an elementary school language arts teacher, transitioning later to a career as an
- [Publication highlights release of muscular dystrophy action plan](https://www.fshdsociety.org/2016/04/09/publication-highlights-release-muscular-dystrophy-action-plan/) - The Muscular Dystrophy Coordinating Committee (MDCC), a congressionally authorized group of representatives from federal agencies and patient advocates, recently released an updated version of its Action Plan for the Muscular Dystrophies. FSH Society played a key role in the formation of the MDCC through its sustained advocacy work with the federal government, and Daniel Perez,
- [FSH Society submits testimony to U.S. Congress](https://www.fshdsociety.org/2016/04/16/fsh-society-submits-testimony-u-s-congress/) - FSH Society President & CEO Daniel Perez has submitted his annual testimony to the U.S. House Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and Related Agencies (LHHSE). This year, the Society has requested $24 million FY2017 appropriations for NIH research on FSHD. Identical testimony was submitted to the Senate. The following table from the
- [Good times! TD Garden Tournament](https://www.fshdsociety.org/2016/04/20/good-times-td-garden-tournament/) - Our first-ever basketball tournament, at Boston's legendary TD Garden--home of the Boston Celtics--was a rousing success. Teams from Acceleron Pharma, SHIFT Communications, O'Connor Drew, Mouse Specifics, Social Sports Boston and Friends of Joel Desilets enjoyed vying with one another in knock out and free throw competitions as well as half-court games. Social Sports Boston won
- [aTyr Pharma to advance Resolaris™ clinical programs](https://www.fshdsociety.org/2016/04/20/atyr-pharma-advance-resolaris-clinical-programs/) - The San Diego-based biotech company, aTyr Pharma, Inc., released findings on March 30, 2016, from a Phase 1b/2 clinical trial of its experimental therapy Resolaris in adult facioscapulohumeral muscular dystrophy (FSHD) patients. While the number of patients in the study is small, the company stated that the favorable safety, tolerability, immunogenicity and activity profile of Resolaris as demonstrated
- [In Dallas, many meet another with FSHD for the first time](https://www.fshdsociety.org/2016/04/22/dallas-many-meet-another-fshd-first-time/) - Ever since joining the FSH Society's Board of Directors, Abilene-resident Wendy Shack has been hoping to gather the region's FSHD patients and families for a meeting. Last Saturday, she saw the fruits of her efforts with the first Dallas FSH Society member get-together, held at the aLoft Las Colinas Hotel in Irvine, Texas. Skylar Conover, an
- [The Power of 25 - Our Spring Challenge Campaign](https://www.fshdsociety.org/2016/05/01/3441/) - This spring, we are launching our most ambitious annual campaign ever to mark this, our 25th year since Daniel Perez and Steve Jacobsen founded the FSH Society. Our goal: to raise $2.5 million by December 31, 2016. To reach it, we need to get off to the strongest start possible. Can you help us? A
- [Whole-Body MRI Yields New Insights](https://www.fshdsociety.org/2016/02/06/whole-body-mri-yields-new-insights/) - By June Kinoshita (from FSH Watch Fall 2015 issue) Click on image below to view full size. In 2013-2014, the FSH Society funded a study led by Doris Leung, MD, of the Kennedy Krieger Institute (KKI) in Baltimore, Maryland, which investigated the use of whole-body magnetic resonance imaging (WBMRI) as a method for detecting and
- [Thank you for helping us exceed our year-end challenge!](https://www.fshdsociety.org/2016/02/15/thank-you-for-helping-us-exceed-our-year-end-challenge/) - At the end of 2015, our Board of Directors pledged gifts totaling $384,805 and challenged FSH Society members and friends to match it. We're delighted to announce that not only did you all match the goal, you exceeded it by quite a bit--$519,910--for a year-end campaign total of $904,715!! We can't thank you enough. These funds
- [FSH Society attending FSH Friends research summit](https://www.fshdsociety.org/2016/02/26/fsh-society-attending/) - FSH Society executive director June Kinoshita will be attending the 2016 FSH Friends Research Summit in Portland, Oregon, this February 29-March 1, timed to mark Rare Disease Day. The summit gathers researchers from academia and industry as well as regulators to assess current therapeutic strategies and discuss approaches to accelerating drug development. The Society will be
- [In Celebration of 25 Years: Thank You](https://www.fshdsociety.org/2016/02/29/in-celebration-of-25-years-thank-you/) - This year, we are proud to say that the FSH Society is celebrating its 25th anniversary. For a quarter century, we have had the honor and the privilege of helping individuals with facioscapulohumeral muscular dystrophy (FSHD) and their families educate the general public, fundraise for research to find a cure and foster community support. Founded
- [Staples Grant to Support Scholarship](https://www.fshdsociety.org/2016/03/15/staples-grant-support-scholarship/) - Did you hear? The FSH Society has been awarded a grant by Staples Foundation. We plan to use the donation to support public awareness and youth education about FSHD, such as a social media awareness raising scholarship competition administered by the Jain Foundation. Eligible students can compete this spring for the scholarship by posting a fact
- [Cure FSHD? Now is the time!](https://www.fshdsociety.org/2018/12/28/cure-fshd-now-is-the-time/) - We can do more than simply aspire to a treatment in some undefined future. We are confident that, with your continued support, we will have treatments for FSH muscular dystrophy on the market by the year 2025, so that families everywhere can live out their dreams. This is a critical time! The patients and families
- [Scholarship rewards students for spreading muscular dystrophy awareness](https://www.fshdsociety.org/2016/01/13/scholarship-rewards-students-for-spreading-muscular-dystrophy-awareness/) - The FSH Society has teamed up with the Jain Foundation and 7 other patient advocacy organizations to fund scholarships to college students who teach others about hereditary muscle-weakening diseases. These conditions include FSHD, the limb-girdle muscular dystrophies (LGMDs), Pompe disease and HIBM (Hereditary inclusion body myopathies). Four $3,000 scholarships will be awarded in 2016 to students who
- [Join a team! Boston Basketball Tournament](https://www.fshdsociety.org/2016/01/16/join-a-team-boston-td-garden-full-court-fantasy/) - UPDATED. The FSH Society is holding a basketball tournament in Boston on March 21, 2016. For more information about signing up or purchasing tickets, please email us or call 781-301-6649. Team registration final deadline, February 29. Space is limited so sign up ASAP. Frequently Asked Questions (FAQs) Who can play? Players age 7 and up of all
- [Your gifts at work](https://www.fshdsociety.org/2015/11/18/your-gifts-at-work/) - What impact have your donations made this past year? Quite a lot! Check out our 2014-2015 YTD Donor Impact Report. Read up on what we've achieved and what we plan to tackle next year. We are deeply grateful to all who have helped fuel our growth and enabled the FSH Society to have a growing
- [Special Black Friday Cyber Monday offer!](https://www.fshdsociety.org/2015/11/25/special-blackfriday-offer/) - Be first online to take advantage of this special sale from Anson Calder, a New York City-based travel accessories company. Anson Calder's finely crafted, luxury goods were designed by and for busy professionals with FSHD. The sale starts this Friday and continues through next Monday, November 30. The sooner you buy, the greater the discount.
- [A time to express gratitude](https://www.fshdsociety.org/2015/11/25/a-time-for-gratitude/) - Thanksgiving is that time of year when we pause to appreciate the blessings in our lives. There's a good reason Thanksgiving is everyone's favorite holiday, and it's not just the pumpkin pie. Gratitude itself is a blessing, not only for the recipient but for the person who expresses gratitude. Feeling grateful makes you happier, even
- [#GivingTuesday matching gift challenge!](https://www.fshdsociety.org/2015/11/30/givingtuesday-matching-gift-challenge/) - This Tuesday, December 1st, your gift will be matched dollar for dollar by a generous benefactor, up to $1,500! Giving Tuesday is observed annually on the Tuesday following Thanksgiving and the blockbuster shopping days of Black Friday and Cyber Monday. Dubbed the unofficial kickoff of the giving season, every year since 2012 philanthropies are celebrated
- [Comedian Wendy Liebman to host the Ghostly Gala](https://www.fshdsociety.org/2015/10/11/comedian-wendy-liebman-to-host-the-ghostly-gala/) - We have good news and bad. Our Ghostly Gala celebrity host, Max Adler, just announced that he has been cast in the next Clint Eastwood movie. According to the Hollywood Reporter, Max "has joined Warner Bros.' Captain Sully movie, which will star Tom Hanks as the pilot who safely landed a passenger aircraft in the
- [Gene interference technology used in  FSH muscular dystrophy](https://www.fshdsociety.org/2015/11/03/gene-interference-technology-used-in-fsh-muscular-dystrophy/) - Proof-of-principle study is the first to use CRISPR technology on the “repeat genome,” as well as its first successful use in primary human muscle cells BOSTON – (November 3, 2015) – The FSH Society, the award-winning non-profit and global leader in the quest to cure Facioscapulohumeral Muscular Dystrophy (FSHD), announced that an FSH Society-funded research
- [2015 Festive Evening of Song](https://www.fshdsociety.org/2015/11/12/festive-evening/) - The FSH Society Concert Committee will miss you this year but in lieu of a live event we hope you will kick up your heels and relax in your most comfortable chair to join us for a stay-at-home concert. Featuring: Your favorite music accompanied by a delicious wine and nibbles!! When: At your leisure Where: Home
- [Musclepalooza 2015 is coming!!](https://www.fshdsociety.org/2015/09/09/musclepalooza-2015-is-coming/) - Saturday, October 3, 2015, 6:30 pm - 10:30 pm The Ellison’s Barn, 5441 Ash Road, Doylestown, PA Admission is a minimum donation of $25 per person. Additional gifts, sponsorships and tribute donations are encouraged! 100% of net proceeds will go to the FSH Muscular DystrophySociety. Music by Jesse Pierce, featuring Marc Irwin & Barry Heimowitz, Coldpheet, and John Beacher. Your
- [FSH Society seeks Board candidates](https://www.fshdsociety.org/2015/09/25/fsh-society-seeks-board-candidates/) - The FSH Society is seeking qualified candidates for its Board of Directors. The Society’s mission is to deliver treatments and a cure for FSHD by connecting all the stakeholders and promoting research through thought leadership, networking, and funding. The candidate should have a very strong personal commitment to our mission. The candidate should be highly collaborative and willing to
- [National Pro Grid League supports the FSH Society](https://www.fshdsociety.org/2015/08/19/national-pro-grid-league-supports-the-fsh-society/) - The National Pro Grid League (NPGL) announced today that it has selected the FSH Society as a beneficiary of its charity program. The men and women athletes in the NPGL, the world’s first coed professional team sport, perform at the highest level of athleticism, displaying feats of strength and agility well beyond the ordinary. The
- [Report from Sacramento](https://www.fshdsociety.org/2015/08/24/report-from-sacramento/) - By Bill Lewis III, MD A new support group met for the first time in Sacramento, CA on August 19th at a centrally located restaurant. We had 10 attendees from the larger Sacramento area. About half the attendees were affected by FSHD and the other half were family members. Ages ranged from twenties to retired. The
- [Doug  & Gracie NYC to DC needs your support!](https://www.fshdsociety.org/2015/08/28/doug-gracie-nyc-to-dc-need-your-support/) - This September 6, Doug Craig, a retired scientist who has lived with FSHD since his teenage years, will be embarking on a 290-mile journey from New York City's Columbus Circle to the steps of the U.S. Capitol in Washington DC riding on his mobility scooter. Accompanying him will be Gracie, a Bernese mountain dog adopted
- [FSH Society Ambassador is crowned Ms. Wheelchair USA](https://www.fshdsociety.org/2015/07/19/fsh-society-ambassador-is-crowned-ms-wheelchair-usa/) - We are so proud to announce that our very own FSH Society Ambassador Skylar Conover was crowned Ms. Wheelchair USA last night at the national pageant. Our Board member Linda Laurello was there to cheer her on and receive a $5,000 donation from sponsor Munzee. Congratulations Skylar!! You are an inspiring young woman, a great
- [Kristin Duquette at the White House!](https://www.fshdsociety.org/2015/07/23/kristin-duquette-at-the-white-house/) - We couldn't be prouder of Kristin, who was invited to attend the 25th Anniversary celebration of the American's With Disabilities Act at the White House. She promises to write a blog post about her adventure. In the meantime, enjoy these photos!
- [FSH Society sets all-time record in funding research](https://www.fshdsociety.org/2015/07/27/fsh-society-sets-all-time-record-in-funding-research/) - The FSH Society announced a new round of grant award recipients bringing the Society’s total grant awards to over $890,000 in 2015. This round of award winners were among a competitive group submitted in February 2015 for review by the FSH Society’s Scientific Advisory Board. Winning projects from this round include deep dives into how the
- [August Member Meetings!](https://www.fshdsociety.org/2015/08/04/august-member-meetings/) - We are west coast heavy this month. Our meetings are steered by FSH Society volunteers and designed to serve the interests of individuals living with FSHD, their families, and friends. Our goal is to establish community support, networking opportunities, and guidance in comfortable environments. Please reach out to us anytime with suggestions, questions or concerns. If you
- [Recently published research](https://www.fshdsociety.org/2015/08/12/recently-published-research/) - The publications listed below were supported by the FSH Society in the form of research fellowships and travel grants. We thank our many donors for providing the funding to advance our scientific and medical understanding of FSHD! β-catenin is central to DUX4-driven network rewiring in facioscapulohumeral muscular dystrophy. Banerji CR, Knopp P, Moyle LA, Severini
- [FSH Society Awarded Four-Star Rating by Charity Navigator for Seventh Consecutive Year](https://www.fshdsociety.org/2015/06/19/fsh-society-awarded-four-star-rating-by-charity-navigator-for-seventh-consecutive-year/) - Award indicates FSH Society outperformed most other charities in America The FSH Society has received its seventh consecutive Charity Navigator four-star rating! Only two percent of the charities the Charity Navigator rates have received at least seven consecutive four-star evaluations. Receiving four out of a possible four stars indicates that the FSH Society adheres to
- [Join Our Los Angeles FSHD CONNECTS Meeting!](https://www.fshdsociety.org/2015/06/22/join-our-los-angeles-fshd-connects-meeting/) - Saturday, July 18, 2015 1:00-5:00 pm A Social Afternoon featuring June Kinoshita! Ellen and Jeff Rennell’s Backyard 3744 Moore Street, Mar Vista, CA 90066. 1:00-5:00 PM A gathering for people with FSHD from the Los Angeles region, for networking, learning, advocacy and more! Organized by the FSH Society and the LA FSHD CONNECTS volunteers, the meeting
- [The FSH Society is here for you](https://www.fshdsociety.org/2015/07/02/the-fsh-society-is-here-for-you/) - Are you there for the FSH Society? Please, if you haven't done so already, click on the JOIN button and become part of the world's largest network of FSHD patients, families, researchers and clinicians, all advocating for a better future. Click on DONATE to make a gift today! The Society's work is almost entirely funded
- [Shop for a cause! Check out our SF auction offerings!](https://www.fshdsociety.org/2015/07/09/shop-for-a-cause-check-out-our-sf-auction-offerings/) - We've begun our Ten Day Countdown of the second annual "Songs in the Key of Steven Blier" benefit concert in San Francisco, on July 17. Be sure to purchase your tickets ASAP, or make a donation in support of our hard-working volunteers! Check out these delectable auction items and start plotting your bidding strategy! Want to bid
- [Lake party makes waves!!](https://www.fshdsociety.org/2015/07/13/lake-party-makes-waves/) - Michelle and Dave Mackay's Lake Party at their home in Hickory Corners, Michigan, created quite a stir this past Saturday night.We heard many express the opinion that this FSH Society benefit has become the social event of the season for communities around Battle Creek and Kalamazoo. Guests snapped up hundreds of $20 raffle tickets for a
- [San Francisco benefit a big success!](https://www.fshdsociety.org/2015/07/19/san-francisco-benefit-a-big-success/) - The FSH Society's Second Annual “Songs in the Key of Steven Blier,” held on Friday evening, July 17, was a grand and elegant affair. Over 150 guests bid on a tantalizing array of auction items, enjoyed a delectable buffet dinner, and laughed at the antics of auctioneer Liam Mayclem. And the music…! Steven Blier and
- [An incredible night for FSHD thanks to Russell and the East Brunswick High School Boys Volleyball Team!](https://www.fshdsociety.org/2015/05/07/an-incredible-night-for-fshd-thanks-to-russell-and-the-east-brunswick-high-school-boys-volleyball-team/) - A positive and enthusiastic event for the FSH Society was held last night! A big thank you to Russell Caratenuto, his coach and team for spreading more awareness about the importance of FSHD. The school not only embraced Russell and his efforts, but wants to make the FSHD Fundraiser an annual event! The special surprise
- [The Ticket in the Street](https://www.fshdsociety.org/2015/05/15/ticket-street/) - By Sarah Geissler I watched as the cement beneath my feet appeared unceasingly like the perpetual roll of ocean waves. I thought about how clean it had once been, and how in the matter of a day it had an entirely new appearance. The surface stared back at me unrelentingly, until I was suddenly jerked
- [The #CureFSHD campaign takes to the Boston transit system](https://www.fshdsociety.org/2015/05/21/the-curefshd-campaign-takes-to-the-boston-transit-system/) - As part of its ongoing awareness campaign, #CureFSHD, the FSH Society has released five distinctive public service ads that will be displayed in 250 subways trains and buses across Boston during the months of May and June. One of these posters is shown above. People who see the ads are encouraged to take a photo
- [Lake Party to raise funds for FSH Society](https://www.fshdsociety.org/2015/06/11/lake-party-to-raise-funds-for-fsh-society/) - Join FSH Society Board member Michelle Mackay and her husband David on July 11 for their annual Lake Party fundraiser at their home in Hickory Corners, Michigan. Michelle is one of the 870,000 people worldwide who are coping with facioscapulohumeral muscular dystrophy on a daily basis, which has propelled her to become a vocal and active advocate in battling
- [#FSHDSelfies campaign wins award](https://www.fshdsociety.org/2015/06/16/fshdselfies-campaign-wins-award/) - We have some good news to share. Last night members of SHIFT Communications, our pro bono PR/Marketing partner, attended the annual Publicity Club of New England’s Bell Ringer awards. The Publicity Club of New England is the region’s oldest not-for-profit public relations trade organization. The Bell Ringer Awards honor the superior work done by public relations
- [The Tale of the Piggy Back Spartan Race](https://www.fshdsociety.org/2015/03/18/tale-piggy-back-spartan-race/) - Re-posted with permission from Spencer Wyckoff Before the Race Three ordinary people set out toward the Georgia International Horse Park on Saturday March 7, 2015 around 7:00am. Our bellies were full of steel cut oats and maple syrup – fuel for the day’s main event – the Atlanta Sprint Spartan Race. The crew: Dani Pasierb, Carden Wyckoff, and Spencer
- [In Memorium: Remembering Robert F. Smith, J.D., long-time FSH Society Board member](https://www.fshdsociety.org/2015/04/08/robert-f-smith-long-time-fsh-society-board-member-died/) - We are deeply saddened to report that Bob Smith, a member of the FSH Society's Board of Directors, passed away last night following a brief illness. Bob was an attorney practicing in the areas of real estate and land use matters, estate planning and probate, and business organization and transactions from his office in Cape Cod,
- [The very model of a modern epigenetic disease](https://www.fshdsociety.org/2015/04/26/model-modern-epigenetic-disease/) - Yes, we’re talking about FSHD On those rare occasions (such as the FSHD Connect meeting) when large numbers of individuals with FSHD gather in one place, one can’t help but be struck by how greatly symptoms vary from person to person. Some twentysomethings are in wheelchairs, while some septuagenarians are still walking with the aid
- [Volleyball fundraiser](https://www.fshdsociety.org/2015/04/28/volleyball-fundraiser/) - By Russell Caratenuto III This May 6, I’m organizing an FSHD fundraiser with the East Brunswick High School boys volleyball team in order to raise awareness for FSHD. As I am personally affected by the disease, I was motivated to raise funds to help the fight against FSHD. Before my diagnosis, I had never heard
- [Our team is growing!](https://www.fshdsociety.org/2015/02/06/team-growing/) - The FSH Society team is expanding, with two new staff members, Diane Burke and Kristin Duquette, taking key positions to enable the organization to meet critical challenges in the coming years. In December 2014, Diane Burke joined as Director of Finance and Administration, stepping into the sizable void left by the retirements of the FSH
- [UC Davis study is seeking volunteers](https://www.fshdsociety.org/2015/02/08/uc-davis-study-seeking-volunteers/) - We have been notified that researchers at the UC Davis Medical School are seeking FSHD patients to volunteer for a study. Read here about why participating in research is so important. Your contribution of time and effort is essential to the successful development of treatments for FSHD. Here is information we received from the study coordinator:
- [University of Kansas seeks volunteers for study](https://www.fshdsociety.org/2015/02/09/univeristy-kansas-seeks-volunteers-study/) - FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey Statland, MD, of the University of Kansas Medical School. Recent genetic advances in the understanding of FSHD have identified potential future targets for therapy. Consequently,
- [Remembering Carol Perez](https://www.fshdsociety.org/2015/02/09/remembering-carol-perez/) - We note the three-year anniversary of Carol Anne Perez's death at age 76, on February 3, 2012, from respiratory complications of FSHD. Many patients remember Carol as the person on the other end of the phone line when they would call the FSH Society for help and a sympathetic ear. She changed many people's lives. As
- [A painless way to give](https://www.fshdsociety.org/2014/11/24/painless-way-give/) - Support the FSH Society simply by shopping on AmazonSmile! It's easy and doesn't cost you a cent extra. When shopping on Amazon, simply do it through the AmazonSmile portal (smile.amazon.com). The first time you sign up at AmazonSmile, just choose the FSH Society as your charity of choice. Then start shopping!
- [Good Morning America spotlights FSHD](https://www.fshdsociety.org/2014/12/23/good-morning-america-spotlights-fshd/) - Carlos Romero, an FSH Society member, was featured today on Good Morning America in connection with People magazine's annual "Half their Size" issue, which is out on news stands today. While the magazine focuses on several individuals' remarkable success in overcoming obesity, Carlos made a point of highlighting the role his FSHD diagnosis played in his personal transformation. You
- ["Songs in the Key of Steven Blier" wows San Francisco](https://www.fshdsociety.org/2014/07/28/songs-key-steven-blier-wows-san-francisco/) - [ngg_images gallery_ids="6" display_type="photocrati-nextgen_basic_slideshow"] We barely have words to express how grateful we are to everyone who contributed so much spirit and hard work to make our first-ever San Francisco gala, "Songs in the Key of Steven Blier," such a smashing success. The event grossed over $100,000, which is absolutely amazing! Frederica Von Stade exhilarated the audience with her witty and
- [Interview with Daniel Perez](https://www.fshdsociety.org/2014/08/20/interview-daniel-perez/) - Living with and fighting against a deadly disease By Jessica Bartlett, Boston Business Journal Dan Perez, President and CEO of the FSH Society, has testified nearly 40 times before Congressional committees to seek funding for research into the deadly genetic muscle disease. Living with FSHD himself, Perez knows firsthand how dire the mission is to
- [FSH Society receives sixth consecutive four-star rating](https://www.fshdsociety.org/2014/04/10/fsh-society-receives-sixth-consecutive-four-star-rating/) - From PRWeb The FSH Society, the Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD), today announced it has received its sixth consecutive Charity Navigator four-star rating. Scoring 68.40 out of a possible 70 points in its evaluation, the FSH Society is currently listed as one of “10
- [Adveq Provides FSH Society Generous Gift After Witnessing Employee's Journey](https://www.fshdsociety.org/2014/01/14/adveq-provides-fsh-society-generous-gift-witnessing-employees-journey/) - Mother's struggle with FSH inspires company to make a charitable donation this holiday season. (PRWEB) January 14, 2014 Over the holidays, we received a generous $10,000 donation from Adveq, a leading asset manager investing in private equity and real asset funds globally. FSH Society was provided this gift after Adveq witnessed the courage of one
- [Twitter blows up for Phil's Jam](https://www.fshdsociety.org/2014/02/27/twitter-blows-phils-jam/) - The first annual "Phil's Jam for FSH" drew a crowd of music lovers to the Wild Wing Cafe in Franklin, Tennessee, last night. Using the occasion to generate awareness about FSHD, the Society found a donor who agreed to give $1 for every Tweet and Facebook share about the event during a 24-hour period, up
- [FSH Society Mid-Atlantic Patient Support Group Meeting Sept. 28, 2013](https://www.fshdsociety.org/2013/09/14/fsh-society-mid-atlantic-patient-support-group-meeting-sept-28-2013/) - Saturday, September 28th, 9:30 AM - 1:00 PM. Kennedy Krieger Institute Outpatient Center 801 North Broadway, Baltimore, MD Light refreshments will be served. The meeting will be live-streamed. Details will be sent closer to the date. Featured speakers: Orthopedic surgeon Leigh Ann Curl of Medstar Harbor Hospital is a world authority on scapular fixation surgery
- [2013 Festive Evening of Song raises record amount](https://www.fshdsociety.org/2013/09/30/2013-festive-evening-of-song-raises-record-amount/) - Tonight, friends and supporters of the FSH Society assembled at the New York Botanical Garden, amid glorious autumn foliage and blooms, to experience the two-fold magic of music and philanthropy. Music stirs our emotions and joins us together in our common humanity, while philanthropy channels our care and concern for one another into action that
- [More than meets the eye (and ear)](https://www.fshdsociety.org/2019/07/05/more-than-meets-the-eye-and-ear/) - by Jenny Hasenjaeger, Bennet, Nebraska Since the time he performed his first childhood song, "I Love My Lips," made famous by VeggieTales' Larry the Cucumber, Levi Benson’s lips have been crooning tunes, and those on the listening end have been loving every note. Accentuating his singing talent are his skills on the piano, violin (wife,
- [The FSH Society Answers Questions About the New Gene SMCHD1 for FSH Muscular Dystrophy](https://www.fshdsociety.org/2013/01/24/the-fsh-society-answers-questions-about-the-new-gene-smchd1-for-fsh-muscular-dystrophy/) - Fueled by funding from the FSH Society, an international research team has discovered the genes that cause facioscapulohumeral muscular dystrophy (FSHD), a devastating muscle-wasting disease that affects 500,000 people around the world. The FSH Society answers questions about what these findings mean for patients. More Facioscapulohumeral muscular dystrophy (FSHD) is a disease most people have
- [We've earned our 2017 Great Nonprofits badge!](https://www.fshdsociety.org/2017/10/26/weve-earned-2017-great-nonprofits-badge/) - Sincere thanks to our members who reviewed the performance of the FSH Society and helped us earn our fifth consecutive Top-rated Great Nonprofits badge! We work hard for all of you, and it inspires our team to redouble our efforts when you give us so much encouragement! Thank you!
- [In memorium: Richard Lefebvre, former FSH Society Board member](https://www.fshdsociety.org/2017/08/15/memorium-richard-lefebvre-former-fsh-society-board-member/) - Former FSH Society board member Dick “Hap” Lefebvre passed away this past Saturday at the age of 70 from complications of FSH muscular dystrophy. For those wishing to reach out to his wife Linda or his daughter Amy please click on this link to view his obituary and the details of Wednesday’s service. Lefebvre was
- [World FSHD T-shirts are here!](https://www.fshdsociety.org/2017/05/22/world-fshd-t-shirts/) - World FSHD Day is right around the corner and we know you want to be ready to raise awareness. The Society’s World FSHD Day t-shirts are here in the official color: orange. Get into the spirit of World FSHD Day however you can! Get creative! Paint your nails orange, put up orange lights near your
- [Susan Barclay’s 50th Birthday Challenge #Whistle4FSH](https://www.fshdsociety.org/2017/05/18/susan-barclays-50th-birthday-challenge-whistle4fsh/) - #Whistle4FSH has one goal—to find treatments for FSHD, the most prevalent type of muscular dystrophy, caused by a genetic mutation on chromosome 4. People with FSHD can not only lose the ability to walk, do simple tasks, or blink, but also be robbed of the ability to whistle or smile. WHISTLE FOR THOSE WHO CANNOT
- [Spring $50K matching gift challenge!](https://www.fshdsociety.org/2017/05/02/spring-50k-matching-gift-challenge/) - Your donations are vital for helping the FSH Society overcome its challenges and meet its goals. We must invest in deciphering FSH muscular dystrophy so that we can aim treatments at the correct targets, even as we build the infrastructure to ensure that clinical trials will have meaningful results. A group of generous benefactors has pledged
- [Our Manhattan Project](https://www.fshdsociety.org/2017/04/13/our-manhattan-project/) - The FSH Society’s March 11, 2017, meeting in Manhattan was a milestone in our efforts to nurture a network of stakeholders in one of our most concentrated urban centers. Hosted by FSH Society Board member Stuart Lai, this meeting featured two stellar speakers, Matthew Harms, MD PhD, of Columbia University College of Medicine, and Jia-Ray
- [Upcoming Denver FSHers Meeting: March 25th, 2017](https://www.fshdsociety.org/2017/03/13/upcoming-denver-fshers-meeting-march-25th-2017/) - Written by Beth Johnston, Development Officer at the FSH Society When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his body), we couldn’t pronounce the disease, let alone understand what it all meant for our family. I discovered the FSH Society several years later (thank
- [Search for Chief Executive Officer](https://www.fshdsociety.org/2017/03/08/search-chief-executive-officer/) - The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed
- [On patient registries: findings from our suvey](https://www.fshdsociety.org/2017/02/09/patient-registries-findings-suvey/) - Last November, the FSH Society invited its members to participate in a survey designed to gauge what members understand about patient registries and for researchers to gain insight into what kind of information patients expect to learn from registries. Here are the findings, summarized in a slide presentation given by June Kinoshita, FSH Society executive director, at
- [Team FSHD Cycling: Race Across America](https://www.fshdsociety.org/2017/02/08/team-fshd-cycling-race-across-america/) - Team FSHD Cycling, formed by George Pollock Jr., will participate in the Open Division as an 8 person team in this year's Race Across America, one of the most respected and longest running ultra-endurance events in the world. Racers must cycle 3,000 miles across 12 states and climb over 170,000 vertical feet. The 2017 RAAM begins in Oceanside, California, on
- [FSHD imaging study is recruiting volunteers](https://www.fshdsociety.org/2017/01/06/fshd-imaging-study-recruiting-volunteers/) - The Kennedy Krieger Institute is recruiting volunteers with FSHD for a clinical research study. Volunteers will be asked to undergo muscle strength testing and non-invasive magnetic resonance imaging (MRI) and spectroscopy (MRS) of the muscles. The strength testing and MRI/MRS scans will be repeated every 3-6 months for up to 2 years. We are particularly
- [Living with FSHD: Katy Kat in the Hat (Video)](https://www.fshdsociety.org/2016/12/02/living-fshd-katy-kat-hat-video/) - Ellen Feldman, filmmaker, created this documentary about a woman she met who has FSH muscular dystrophy. "Katy Kat in the Hat is a story about a woman who defies all odds after being diagnosed with FSH muscular dystrophy at the age of 21," Feldman said. "Katy's muscles may be weakening but her spirit becomes stronger. Despite
- [Holiday Notice](https://www.fshdsociety.org/2016/11/22/holiday-notice/) - Please note that our office will be closed on the following dates: Thursday, November 24, 2016 Friday, November 25, 2016 Friday, December 2, 2016 Monday, December 26, 2016 Monday, January 2, 2017 We apologize for any inconvenience and thank you for your understanding. Have a wonderful, safe and happy holiday season!
- [Help us advance FSHD research by taking our survey](https://www.fshdsociety.org/2016/11/13/help-us-advance-fshd-research-taking-survey/) - Take the survey now! Click here. The FSH Society is participating in an international workshop on FSHD patient registries later this week. We would like to share the patient and family perspective on registries with the experts attending the workshop. Not sure what a registry is? No worries! By taking the survey, you will learn. (If you are not
- ["Into the Light" - The story of the FSH Society](https://www.fshdsociety.org/2016/11/13/light-story-fsh-society/) - Produced for the FSH Society's 25th anniversary, our new documentary tells the story of how the Society's work has led to the discovery of the genetic cause of facioscapulohumeral muscular dystrophy and brought patients out of the darkness into the light. We premiered the film at our CureFSHD gala on November 11. To all the patients,
- [Acceleron to host webcast on FSHD clinical trial](https://www.fshdsociety.org/2016/10/13/acceleron-host-webcast-fshd-clinical-trial/) - (Via BusinessWire.) Acceleron Pharma Inc., a clinical stage biopharmaceutical company focused on the discovery, development and commercialization of innovative therapeutics to treat serious and rare diseases, today announced that it will host an educational webinar on facioscapulohumeral muscular dystrophy (FSHD) and the Company’s Phase 2 clinical trial of ACE-083 in FSHD patients. The webinar will
- [Meet our newest Board of Directors members](https://www.fshdsociety.org/2016/09/13/meet-newest-board-directors-members/) - The FSH Society Board welcomes two new members, who were elected at the May 2016 Board meeting. They bring considerable business, financial, governance, and marketing knowledge with them, along with the deep commitment that comes from having loved ones who are affected by FSHD. Christine Ford is a business graduate of California State University, Sacramento. She
- [Cyndie Abelman Memorial Fundraiser](https://www.fshdsociety.org/2016/09/09/cyndie-abelman-memorial-fundraiser/) - A message from Steve Abelman: It is hard to believe that nearly two years have gone by since Cyndie Abelman's passing. Not a day goes by where her two beautiful daughter's (Rebecca and Anna) and I don't miss her dearly! To help enhance her memory and to raise money for an important cause that continues
- [Chipotle Fundraiser in Castle Rock, CO](https://www.fshdsociety.org/2016/09/06/chipotle-fundraiser-in-castle-rock-co/) - Make dinner a selfless act by joining us for a fundraiser to support the Walk & Roll to Cure FSHD! Just come into the Chipotle at 5642 Allen Way, Space 104 in Castle Rock, CO on Tuesday, September 13th between 5pm and 9pm MT. Be sure to bring THIS FLYER or show it to the cashier on your smartphone. The
- [Video diary: Ryan Levinson](https://www.fshdsociety.org/2016/09/02/video-diary-ryan-levinson/) - FSH Society Ambassador Ryan Levinson just transmitted this video from his berth in Fakarava, a tiny atoll in the Tuamotu chain of French Polynesia! He shares how he has adapted his movements to get around his sailboat. FSH muscular dystrophy won't stop him from living his life to the fullest. Read more about Ryan here. What tricks have
- [New member of our team](https://www.fshdsociety.org/2016/08/11/new-member-team/) - Beth Johnston has joined the FSH Society in August of 2016 as Development Officer. She will work with the Executive Director and the leadership team to create, execute and grow the Society’s fundraising plan and ongoing efforts. Beth's long history with the Society includes fundraising, Board membership, and grant writing. She will continue her commitment to raising
- [Mini Border 2 Border ride to raise awareness](https://www.fshdsociety.org/2016/07/02/mini-border-2-border-ride-raise-awareness/) - Bob Louden, organizer of the monthly Western Washington patient support group, had to cancel his planned Border 2 Border motorized wheelchair ride this summer due to an unexpected surgery, but we are happy to report that he feels well enough to attempt a "Mini Border 2 Border" to scout out the route, which extends from
- [American Ninja Warrior features our Ambassador](https://www.fshdsociety.org/2016/06/03/american-ninja-warrior-features-ambassador/) - Tune in on Wednesday, June 8, for American Ninja Warrior on NBC! The episode airing at 8:00pm ET / 7:00pm CT focuses on the popular show’s Atlanta trials and features Spencer Wyckoff, brother of FSH Society Ambassador Carden Wyckoff. He’s competing in the grueling competition for his sister, to raise awareness of FSH muscular dystrophy. Spencer
- [FSHD Stories: No more hiding](https://www.fshdsociety.org/2016/05/16/fshd-stories-no-hiding/) - By Lexi Pappas [youtube=https://www.youtube.com/watch?v=C8qyAHqydGs] Every year my school holds a public speaking colloquium where over 50 people participate. It is a competition for students to prepare a 3 minute speech on any topic they would like. It can be motivational, inspiring, funny, informational, etc. I decided that this would be my year to compete in
- [FSH Society elects new Board members](https://www.fshdsociety.org/2016/03/15/fsh-society-elects-new-members-board-directors/) - The FSH Society Board of Directors has elected two new members at its February 2016 meeting. The newly elected directors, George Pollock Jr and Neil Solomon, MD, bring extensive experience in business, finance, medicine and the healthcare industry to help guide the future development of the FSH Society. Pollock is a co-founder, Director, and Chief Financial
- [A portrait of Pierre, who lives with FSH muscular dystrophy](https://www.fshdsociety.org/2016/03/08/portrait-pierre-lives-fsh-muscular-dystrophy/) - Check out this wonderful short documentary about Pierre, a 40-year-old who has shared this intimate view of what it is like to live with facioscapulohumeral muscular dystrophy.
- [Anson Calder supports FSH muscular dystrophy research](https://www.fshdsociety.org/2015/12/18/elegant-wallet-supports-fsh-muscular-dystrophy-research/) - Give the gift that gives back! Anson Calder's super slim, elegant wallet is the perfect present to put under the tree this year. "Your search for the perfect wallet is over. At 1/8" thick, this wallet can easily carry all of your necessary cards while maintaining an exceptionally thin profile. Made in the USA from
- [Biology 101 for understanding the CRISPR research](https://www.fshdsociety.org/2015/12/05/qa-on-crispr-research/) - Peter Jones, PhD, and Charis Himeda, PhD, found themselves unexpectedly in the media spotlight last week after publication of their paper on the application of CRISPR technology in FSHD cells. In response to the public's interest in the story, they prepared the following "primer" to explain basic concepts and clarify some points about which people might
- [2015 Year-end challenge: Lighting the way to a cure](https://www.fshdsociety.org/2015/12/03/2015-year-end-challenge/) - Our Board of Directors has pledged a record-setting $384,805 this year for our year-end campaign and challenges you to help match it. Why should you make a gift this year? Quite simply, our track record is incredible. Your donation to the FSH Society is one of the most powerful investments you will ever make to advance
- [Thanksgiving Concert to benefit the FSH Society](https://www.fshdsociety.org/2015/11/13/thanksgiving-concert-to-benefit-the-fsh-society-2/) - Featuring Apostles Creed Sunday, November 22, 2015 2:00-4:30 pm Unity United Church of Christ 2074 Huckleberry Highway Berlin, Pennsylvania Usher in the season of thanks with the music of Apostles Creed, a Contemporary Christian group, performing music by artists such as Casting Crowns, Third Day, Matt Maher, Sidewalk Prophets, Natalie Grant and Susan Ashton, as
- [Dancer with FSH muscular dystrophy has a documentary dream](https://www.fshdsociety.org/2015/10/28/dancer-with-fsh-muscular-dystrophy-has-a-documentary-dream/) - By June Kinoshita When I attended the Los Angeles Ghostly Gala last week, I met an extraordinary woman, Donna Russo, an actress and dancer with FSH muscular dystrophy. Donna told me of her life-long love of dance, and how FSHD had gradually limited her muscle movement, flexibility and range of motion. She shared with me her dream, to
- [October member meetings](https://www.fshdsociety.org/2015/10/10/october-member-meetings/) - Tuesday, October 20, 2015 Denver 7:00pm-9:00pm. A gathering to socialize, exchange knowledge and advocate for FSHD. This meeting will explore ideas for a fundraising event! More info here. Saturday, October 24, 2015 Western Washington Member Meeting 10:00am - 12:00pm. A monthly gathering for friends and family with FSHD held in the Renton region. Skype is
- [Watch DUX4 switch on in facioscapulohumeral MD muscle cells](https://www.fshdsociety.org/2015/09/04/watch-dux4-switch-on-in-facioscapulohumeral-md-muscle-cells/) - In this amazing time-lapse video, as immature muscle cells (myoblasts) develop and fuse to form elongated myotubes, the nuclei inside the cells glow green as they express DUX4 protein, a key player in FSH muscular dystrophy. This video, recorded over 118 hours, was created by Dan Miller's lab at the University of Washington for its 2015 Human Molecular Genetics
- [21st Century Cures passes the U.S. House](https://www.fshdsociety.org/2015/07/18/21st-century-cures-passes-the-u-s-house/) - The U.S. House of Representatives on July 10th passed the 21st Century Cures Act by a lopsided 344 to 77. The bill would increase funding to the National Institutes of Health by nearly $8.75 billion over five years and increase funding to the Food and Drug Administration by $550 million over the same period. The FSH
- [Steven Blier and Julia Bullock Perform to Benefit Muscular Dystrophy Research](https://www.fshdsociety.org/2015/06/22/steven-blier-and-julia-bullock-perform-to-benefit-muscular-dystrophy-research/) - We’re excited to announce the second annual benefit concert, “Songs in the Key of Steven Blier,” on Friday, July 17 at the Marines’ Memorial Club in San Francisco. The evening will start with a reception and silent auction, followed by dinner, a live auction and concert, featuring renowned pianist Steven Blier and the celebrated soprano,
- [Honorary Board's Kelli O'Hara nabs Tony!](https://www.fshdsociety.org/2015/06/08/honorary-boards-kelli-ohara-nabs-tony/) - Twitter erupted in a frenzy of virtual applause and "it's about time" tweets when Kelli O'Hara won the 2015 Tony Award for Best Actress in a Musical last night. It was her sixth nomination, this time for her widely acclaimed performance in "The King and I." The FSH Society is so proud to have Kelli
- [Race for a cure!](https://www.fshdsociety.org/2015/05/22/race-for-a-cure/) - Calling all racing fans! The FSH Society is headed for the big screen at the Indy 500 this weekend where we will launch a gift matching campaign. This Sunday at the 99th running of the Indianapolis 500 Mile Race at the Indianapolis Speedway we will unveil a new Public Service Announcement (PSA), which will air
- [Kelli O'Hara dazzles in "The King and I"](https://www.fshdsociety.org/2015/04/17/kelli-ohara-dazzles-king/) - Congratulations to FSH Society honorary board member Kelli O'Hara for her much-anticipated debut in the role of Anna in the current Broadway revival of "The King and I." The production premiered last night at New York's Lincoln Center and won admiring reviews from the critics. Ben Brantley of the New York Times writes: "One look
- [Setting a new record in our funding of research](https://www.fshdsociety.org/2015/04/06/setting-new-record-funding-research/) - In the first half of 2015, the FSH Society has awarded $485,840 in grants to new projects in facioscapulohumeral muscular dystrophy research. These projects were among a competitive group that was submitted in August 2014 for review by our Scientific Advisory Board. They include deep dives into how the genetics of FSHD affects the early
- [FSH Society's Daniel Perez presents to MDCC](https://www.fshdsociety.org/2015/03/26/fsh-societys-daniel-perez-presents-mdcc/) - Daniel Perez, president and CEO of the FSH Society, represented the FSHD community at last week's meeting of the Muscular Dystrophy Coordinating Committee (MDCC). The day-long meeting was held on March 17, 2015, at the National Institutes of Health (NIH) in Bethesda, Maryland. Perez served on the MDCC from 2001 to 2010 and was re-appointed
- [April patient meetings from coast to coast](https://www.fshdsociety.org/2015/03/12/april-patient-meetings-coast-coast/) - Are you eager to meet other patients and learn about the latest research? Several meetings are being planned for next month. Find out if there's one near you: April 12, 2015 3:00 PM EST. An FSHD gathering in Hobe Sound, Florida Join host Mimi Brown and others living with FSHD for an afternoon of socializing, discussion
- [Spartan Race for Carden's Cure](https://www.fshdsociety.org/2015/03/05/spartan-race-cardens-cure/) - Carden Wyckoff, who is featured in the #CureFSHD Campaign, will be participating with her brother Spencer in the Spartan Race and Obstacle Course in the Atlanta area. Carden and her family are raising $5000 for the FSH Society. You can donate to their efforts at Spartan Race for Carden's Cure
- [Share to be Aware: FSH Society Launches #CureFSHD Campaign](https://www.fshdsociety.org/2015/03/03/share-aware-fsh-society-launches-curefshd-campaign/) - The FSH Society is excited to announce that today we will be kicking off our new campaign, #CureFSHD! The purpose of the campaign is to spread awareness and educate people about FSHD. We will begin sharing impactful photographs of people with FSHD overlaid with little-known facts, warning signs and impacts of FSHD. Each day, on our
- [Welcome to our new website!](https://www.fshdsociety.org/2015/01/12/welcome-new-website/) - We hope you like it. We have migrated and updated the valuable content from our previous website and added new features, such as a blog (like this post, always visible on the homepage), and a navigation system designed to make it easier for you to find the wealth of information on this site. Our new website is
- [Transforming the landscape for FSHD](https://www.fshdsociety.org/2014/10/23/transforming-landscape-fshd/) - https://www.youtube.com/watch?v=Wq28tRwlH6g Join with thousands of patients, family members and friends in supporting research on FSH muscular dystrophy. The FSH Society helped launch a worldwide scientific effort, and today we stand on the brink of discovering the first treatments. With big opportunities come big challenges, to raise awareness, rally patients and families to volunteer for research,
- [Senator Elizabeth Warren addresses FSH Society meeting](https://www.fshdsociety.org/2014/08/18/senator-elizabeth-warren-addresses-fsh-society-meeting/) - https://www.youtube.com/watch?v=EnRH0xzrjJw FSHD Connect Unites Patients, Doctors and Researchers to Explore New Insights on Rare Disease Boston, MA (August 18, 2014) (PRWEB) August 18, 2014 The FSH Society, the Massachusetts-based charitable non-profit organization, is pleased to announce that Senator Elizabeth Warren expressed her support for the Biennial “FSHD Connect” International Network Meeting and FSHD research and awareness, in her opening
- [#FSHDselfies Shoot a Selfie, Raise Awareness  ](https://www.fshdsociety.org/2014/07/06/fshdselfies-shoot-selfie-raise-awareness/) - selfie noun, informal – a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and uploaded to a social media website – Oxford Dictionary Our national social media campaign to raise awareness about FSHD uses the popular cultural meme of the “selfie” – a photograph that one has taken of oneself,
- [FSHD Connect Scholarship Program](https://www.fshdsociety.org/2014/06/27/fshd-connect-scholarship-program/) - Great news! We've been able to set up a scholarship fund to cover the registration fees for FSHD patients and family members who need financial assistance to attend this year's FSHD Connect Conference. If you would like to apply for a scholarship, please email june.kinoshita@fshdsociety.org with the following information: Your full name and contact information
- [Welcome to our Celebrity Board](https://www.fshdsociety.org/2014/05/03/welcome-celebrity-board/) - FSH Society Announces Honorary Board Committed to Raising FSHD Awareness Distinguished celebrities help increase visibility of rare incurable disease (From PRWeb) The FSH Society, the Massachusetts-based non-profit organization that has transformed the science of the rare incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Honorary Board. The board of fourteen distinguished celebrities will work in
- [FSH Society Announces Honorary Board Committed to Raising FSHD Awareness](https://www.fshdsociety.org/2014/04/29/fsh-society-announces-honorary-board-committed-raising-fshd-awareness/) - The FSH Society, the Massachusetts-based non-profit organization that has transformed the science of the rare incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced its Honorary Board. The board of fourteen distinguished celebrities will work in cooperation with the FSH Society to raise visibility of FSHD, a disease that remains relatively unknown but which is at
- [Fundraising Webinar: Organizing a Benefit Concert](https://www.fshdsociety.org/2014/04/22/fundraising-webinar-organizing-benefit-concert/) - From our series of "Fundraising Masterclasses," this webinar features Beth Johnston and Judith Seslowe who have co-chaired the our New York City benefit concert. They share how a backyard picnic grew into such a successful event. Check it out for loads of helpful tips and inspiration! https://www.youtube.com/watch?v=vLVH9nZlX9U
- [How to organize a successful auction](https://www.fshdsociety.org/2014/03/24/organize-successful-auction/) - Here's our first "Fundraising Masterclass" webinar featuring Terry Colella, who shares the lessons she has learned from organizing her highly successful annual auction. Questions? Post them under comments below! https://www.youtube.com/watch?v=bXTKbfRSajs
- [GE Chairman’s Award Benefits FSH Muscular Dystrophy Research](https://www.fshdsociety.org/2014/03/03/ge-chairmans-award-benefits-fsh-muscular-dystrophy-research/) - From PRWeb The $25,000 award to the Massachusetts-based FSH Society will fund scientific research grants focused on discovering and developing treatments for facioscapulohumeral muscular dystrophy. Lexington, MASS. (PRWEB) March 03, 2014. When GE Aviation’s Vice President Mohammad Ehteshami was told that he had received the prestigious GE Chairman’s Award, he asked that the $25,000 be donated
- [GE Chairman’s Award Benefits FSH Muscular Dystrophy Research](https://www.fshdsociety.org/2014/03/03/ge-chairmans-award-benefits-fsh-muscular-dystrophy-research-2/) - When GE Aviation’s Vice President Mohammad Ehteshami was told that he had received the prestigious GE Chairman’s Award, he asked that the $25,000 be donated to the FSH Society, a Massachusetts-based charitable foundation that has transformed the science of a little-known disease, facioscapulohumeral muscular dystrophy (FSHD). "FSHD has impacted someone very dear to me, and
- [Second Annual Hustle for Muscle Golf Tournament to Raise Funds for FSH Muscular Dystrophy](https://www.fshdsociety.org/2013/09/12/second-annual-hustle-muscle-golf-tournament-raise-funds-fsh-muscular-dystrophy/) - Today the FSH Society announced the second annual Hustle for Muscle Golf Tournament taking place on Friday, October 4 in Abilene, TX. The tournament and silent and live auction will be held at the Abilene Country Club with proceeds to benefit FSH Muscular Dystrophy research through the FSH Society. FSHD, one of the most prevalent types of
- [Pianist Steven Blier and Tony Award-Winner Judy Kaye to Perform Together to Benefit the FSH Society](https://www.fshdsociety.org/2013/09/10/pianist-steven-blier-and-tony-award-winner-judy-kaye-to-perform-together-to-benefit-the-fsh-society/) - New York (PRWEB) September 09, 2013. Today The FSH Society, a world leader in combating muscular dystrophy, announced that its annual Festive Evening of Song, featuring luminary pianist Steven Blier and Broadway veteran Judy Kaye, will take place on Monday, September 30, 2013 at the New York Botanical Garden. The event will be a rare union
- [Peach State Quartet to Sing for FSH Muscular Dystrophy Research at Fulmer Family Dinner.](https://www.fshdsociety.org/2013/08/05/peach-state-quartet-to-sing-for-fsh-muscular-dystrophy-research-at-fulmer-family-dinner/) - Peach State Quartet to Sing for FSH Muscular Dystrophy Research at Fulmer Family Dinner. More
- [Kelli O'Hara asks for your support](https://www.fshdsociety.org/2013/07/30/kelli-ohara-asks-for-your-support/)
- [FSH Society for Muscular Dystrophy is One of “Ten Charities Worth Watching” PRWeb. Story at Charity Navigator](https://www.fshdsociety.org/2013/05/15/fsh-society-for-muscular-dystrophy-is-one-of-ten-charities-worth-watching-prweb-story-at-charity-navigator/) - FSH Society for Muscular Dystrophy is One of “Ten Charities Worth Watching” PRWeb. Story at Charity Navigator
- [FSH Society has earned Charity Navigator's highest 4-Star Charity Navigator](https://www.fshdsociety.org/2013/04/08/fsh-society-has-earned-charity-navigators-highest-4-star-charity-navigator/) - FSH Society has earned Charity Navigator's highest 4-Star Charity Navigator rating for a fifth consecutive year! FSH Society joins a select group of the less than four percent of charities that have achieved five consecutive four-star evaluations Read online press release at PRWeb.
- [FSH Society Submits FY2014 Written Testimony U.S. House Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $12 million annually](https://www.fshdsociety.org/2013/03/15/fsh-society-submits-fy2014-written-testimony-u-s-house-appropriations-subcommittee-on-lhhse-for-funding-nih-and-research-on-fshd-at-a-level-of-12-million-annually-more-testimony-in-pdf/) - FSH Society Submits FY2014 Written Testimony U.S. House Appropriations Subcommittee on LHHSE for funding NIH and Research on FSHD at a level of $12 million annually More / Testimony in PDF
- [Stanford Hospital & Clinic’s Neuromuscular Program’s Open House](https://www.fshdsociety.org/2013/03/11/stanford-hospital-clinics-neuromuscular-programs-open-house/) - FSHD patients and families are invited to attend the Stanford Hospital & Clinic’s Neuromuscular Program’s open house, taking place April 10, from 4:30 PM to 7:00 PM in the 2nd floor conference room of the Hoover Pavilion at 211 Quarry Road, Palo Alto, California
- [The Centers for Disease Control Spotlights FSH Muscular Dystrophy](https://www.fshdsociety.org/2013/02/11/the-centers-for-disease-control-spotlights-fsh-muscular-dystrophy/) - The Centers for Disease Control Spotlights FSH Muscular Dystrophy More and see also CDC.gov

## Pages

- [Home](https://www.fshdsociety.org/)
- [Contact Us](https://www.fshdsociety.org/contact-us/) - Complete our contact us form here! Topics of inquiry include, but are not limited to, scientific research, drug trials, tissue donations and more!
- [Ways to Give](https://www.fshdsociety.org/get-involved/how-to-help/ways-to-give/) - The FSHD Society is at the forefront of driving research, empowering families, expanding access to care, and advocating for lasting change. Your support fuels groundbreaking progress in treatments, provides life-changing resources for those affected, and ensures no one faces this disease alone. Your Gift Powers Real Change With your generosity, we are: Accelerating research through
- [Online Communities](https://www.fshdsociety.org/get-involved/communities/online-communities/)
- [FSHD Care Connector](https://www.fshdsociety.org/living-with-fshd/managing-fshd/fshd-navigator/care-connector/) - On this map, you can search for healthcare providers near you. The doctors listed here, to the best of our knowledge, have come across FSHD before. We can't recommend one doctor over another, and we can't measure exactly how knowledgeable they are. We provide this information to help give you a head start in your
- [FSHD Connect Conference](https://www.fshdsociety.org/get-involved/fshd-connect-conference/)
- [International Research Congress](https://www.fshdsociety.org/research-and-clinical-care/for-researchers/international-research-congress/) - Thank you to everyone who attended the 2026 IRC in Chicago. We look forward to seeing you in Madrid, Spain: June 24-25, 2027.​ Thank you for joining us in Rosemont, Illinois (Greater Chicago area) for our annual global gathering dedicated to advancing research in Facioscapulohumeral Muscular Dystrophy (FSHD). Leading scientists, clinicians, industry partners, and emerging
- [Genetic Testing](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/genetic-testing/) - Your doctor can order genetic testing for FSHD. Before seeking a test, consult a genetic counselor to make sure you fully understand the process.
- [Media Library](https://www.fshdsociety.org/news-media/media-library/) - These images are available for download to use in news articles, blogs, etc. Please credit the FSHD Society as the source.
- [Avidity's FORTITUDE-1/2 Trial](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/avidity-fortitude-trial/) - Detailed information and frequently asked questions about Avidity’s FORTITUDE trial
- [Avidity’s FORTITUDE-3 Trial](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/aviditys-fortitude-3-trial/)
- [Current Trials and Studies](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/) - All you need to know about current clinical trials and studies in FSHD.
- [Fundraising](https://www.fshdsociety.org/get-involved/how-to-help/ways-to-give/fundraise-your-way/) - Every year, people from all over the country come together to raise money to help find treatments and a cure for FSHD. These amazing volunteers are making a real difference—and you can, too! Whether you host a Pampered Chef party, put together a golf day or turn your birthday into a day of donation instead
- [Grant Opportunities](https://www.fshdsociety.org/research-and-clinical-care/for-researchers/grant-opportunities/)
- [Restem](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/restem/)
- [World FSHD Day](https://www.fshdsociety.org/get-involved/world-fshd-day/) - Celebrate World FSHD Day on June 20th What is World FSHD Day? Observed on June 20, World FSHD Day is a global movement to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. On this day, people living with FSHD, along with their families and friends, flood social
- [Target FSHD](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/target-fshd/)
- [Financials](https://www.fshdsociety.org/about-us/about-the-fshd-society/financials/) - The FSHD Society is a top-rated nonprofit with Charity Navigator and holds a Platinum Seal of Transparency from GuideStar. We are committed to accountability and transparency. Explore our financial reports and donor impact.
- [Gathering Place](https://www.fshdsociety.org/get-involved/communities/online-communities/gathering-place/) - No one should have to go through their FSHD journey alone. There is strength in sharing experiences, learning from others, and knowing that you’re not the only one facing these challenges. That’s why The Gathering Place was created! With the help of incredible volunteer leaders from all over the country—and even around the world—The Gathering
- [Let's Meet The Moment](https://www.fshdsociety.org/lets-meet-the-moment/)
- [The FSHD Advocate Magazine](https://www.fshdsociety.org/fshd-advocate/) - Published twice per year, the FSHD Advocate is the voice of our community, educating and empowering us all to take control of our FSHD journey and power the path towards a cure. Each issue provides the latest research news, stories about our movers and shakers, practical tips for living with FSHD, resources, and more.
- [Volunteer](https://www.fshdsociety.org/get-involved/how-to-help/volunteer/)
- [Epicrispr EPI-321 Study](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/epicrispr-epi-321-study/)
- [MOVE Peds Natural History Study](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/move-peds-natural-history-study/)
- [Arrowhead and Sarepta's SRP-1001 Trial](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/arrowhead-trial/)
- [Walk & Roll to Cure FSHD](https://www.fshdsociety.org/get-involved/walk-roll-to-cure-fshd/) - When we move together, progress moves faster.
- [Current Campaigns](https://www.fshdsociety.org/get-involved/advocacy/government-advocacy/current-campaigns/) - Are you ready to advocate for the FSHD community? We need your voice to help influence hearts and minds! By working together, we can make sure that our elected officials, and those with the power to make change, are representing the needs of FSHD patients and families. Learn more about the actions you can take
- [Government Advocacy](https://www.fshdsociety.org/get-involved/advocacy/government-advocacy/)
- [Roche's MANOEUVRE Trial (ended in March 2026)](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/roche-manoeuvre-trial/) - Detailed information and frequently asked questions about Roche’s MANOUEVRE trial
- [Our Impact](https://www.fshdsociety.org/about-us/about-the-fshd-society/our-impact/) - We help people affected by FSHD through education and outreach, by accelerating scientific and medical research, and through advocacy efforts.
- [Drug Development Pipeline](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/drug-development-pipeline/) - A Growing Number of Treatments in Development for FSHD More and more companies and research labs are working on early-stage treatments for FSHD. These efforts are part of what’s called the drug development pipeline—the process of finding and testing new medicines.
- [Walk & Roll Teams](https://www.fshdsociety.org/get-involved/walk-roll-to-cure-fshd/walk-roll-teams/) - Whether you're walking and rolling with us in person or participating virtually, every step leads to one powerful moment: the Walk & Roll to Cure FSHD. From now until then, we invite you to team up and help drive progress toward a cure for FSHD. Teams are the heart of the FSHD Community. They
- [Walk & Roll Participant Headquarters](https://www.fshdsociety.org/get-involved/walk-roll-to-cure-fshd/walk-roll-participants/) - Whether you’re joining us in person or participating virtually, every step you take helps move the FSHD community forward—and brings us closer to effective treatments and a cure. From now through event day, we’re celebrating the power of everyday people taking action. Because every fundraiser, every dollar, every message shared, and every mile walked
- [Sandbox-1](https://www.fshdsociety.org/sandbox-1/)
- [MOVE and MOVE+ Natural History Studies](https://www.fshdsociety.org/research-and-clinical-care/current-trials-and-studies/move-and-move-natural-history-studies/)
- [Research & Clinical Care](https://www.fshdsociety.org/research-and-clinical-care/)
- [For Researchers](https://www.fshdsociety.org/research-and-clinical-care/for-researchers/)
- [For Clinicians](https://www.fshdsociety.org/research-and-clinical-care/for-clinicians/) - Where to Start? The FSHD Society offers a comprehensive suite of resources designed to keep you at the forefront of FSHD care and discovery. From clinical guidelines and diagnostic tools to continuing education and patient engagement programs—everything you need is one click away.
- [Research Updates](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/research-updates/) - Explore blog posts, educational webinars, and upcoming events focused on the latest Research Updates.
- [2026 FSHD T-Shirt Contest](https://www.fshdsociety.org/get-involved/walk-roll-to-cure-fshd/2026-tshirt-contest/) - The FSHD Society is excited to announce our 2026 T-Shirt Design Contest. Folks living with FSHD, their family, friends, caregivers, and interested individuals are invited to submit design ideas for a World FSHD Day t-shirt, the 2026 Walk & Roll to Cure FSHD t-shirt, and general FSHD and FSHD Society merchandise. Please see below for
- [Early-onset FSHD](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/early-onset-fshd/) - Explore information and support for children and families affected by early-onset FSHD
- [Volunteer Resources](https://www.fshdsociety.org/get-involved/how-to-help/volunteer/volunteer-resources/)
- [Advocacy](https://www.fshdsociety.org/get-involved/advocacy/) - It is crucial that FSHD voices are heard. By engaging with elected officials, regulators, and government offices, we can make a big difference in getting treatments to families faster. Using these connections, we can spread the word about FSHD, find funding, work together with others, and make the approval process faster. This will help remove
- [Continuing Education](https://www.fshdsociety.org/research-and-clinical-care/for-clinicians/continuing-education/) - Empowering Clinicians and Advancing Research in FSHD The FSHD Society offers expert-driven education designed specifically for healthcare professionals, including physicians, physical therapists, genetic counselors, and researchers. Our goal is to equip you with the most current, evidence-based knowledge to support excellence in care and accelerate progress toward effective treatments.
- [True Cost of FSHD](https://www.fshdsociety.org/get-involved/advocacy/payor-advocacy/true-cost/) - True Cost of FSHD study is designed to uncover hidden costs that families living with FSHD bear, with the goal of advocating for fair coverage and access to future treatments
- [FSHD University](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/fshd-university/) - Your hub for living well with FSHD. Monthly webinars, tips for physical and mental health, plus the latest information and research updates.
- [FSHD 360](https://www.fshdsociety.org/get-involved/fshd-360-conference/) - Empowering you with the latest research, education on managing your condition, and community connection! Powering the Path Forward through Knowledge and Community Being diagnosed with FSHD can feel overwhelming, but you are not alone. Every person’s journey is unique, but together, we can move forward with knowledge, support, and hope. FSHD 360 Regional Conferences
- [BetterLife FSHD](https://www.fshdsociety.org/living-with-fshd/managing-fshd/betterlife-fshd/) - Learn about BetterLife FSHD, a health platform that help us better understand FSHD using patient data and experiences.
- [Patient Library](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/patient-library/) - Library of resources for facioscapulohumeral muscular dystrophy (FSHD)
- [Newly Diagnosed with FSHD?](https://www.fshdsociety.org/living-with-fshd/managing-fshd/newly-diagnosed/) - Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy (FSHD) or have been living with FSHD for some time. We are ready to listen and eager to share our own knowledge.
- [FSHD Clinical Care](https://www.fshdsociety.org/living-with-fshd/managing-fshd/clinical-care/) - Learn more about important health issues for FSHD patients, click on the boxes below to learn about specific FSHD health conditions & symptoms.
- [BetterLife FSHD Research Gateway](https://www.fshdsociety.org/research-and-clinical-care/for-researchers/research-gateway/) - The BetterLife FSHD Research Gateway offers streamlined access to real-world FSHD data
- [TestFSHD](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/genetic-testing/testfshd/) - The FSHD Society knows how important it is for people with facioscapulohumeral muscular dystrophy (FSHD) to get the right care and be ready for new treatments. That’s why we’ve created a genetic testing program to help patients confirm their diagnosis and qualify for upcoming clinical trials. Through our program, you’ll get support from expert
- [Genetic Cause](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/genetic-cause/)
- [Matching Gift](https://www.fshdsociety.org/get-involved/how-to-help/ways-to-give/matching-gift/) - Matching Gift & Volunteer Match Resource Page Multiply the Impact of your Gift! Did you know you can double your support for FSHD Society, without even giving a dollar more? You can if your employer participates in our Matching Gifts Program. Many corporations match employee donations to our organization. If you volunteer with us, your
- [Parents' Roundtable Chapter](https://www.fshdsociety.org/get-involved/communities/early-onset-fshd-chapter/) - Serving Parents of Children with FSHD The Parents' Roundtable Chapter is led by parents who know all too well the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion, and guidance. Our aim is to connect families, deepen community, and support
- [Research We Have Funded](https://www.fshdsociety.org/about-us/about-the-fshd-society/our-impact/grants-we-have-funded/) - Since 1998, the FSHD Society has supported groundbreaking research on facioscapulohumeral muscular dystrophy (FSHD). Our grants have helped discover the genetic cause of FSHD, shown how it affects patients, and explained the biological processes that lead to muscle weakness and damage. Researchers have also found possible targets for treatments, created models to test new drugs,
- [Adjunct Scientific Workshop](https://www.fshdsociety.org/get-involved/advocacy/fda-advocacy/adjunct-scientific-workshop/) - On May 9th, 2025, the FSHD Society hosted an Adjunct Scientific Workshop. After the meeting, the report and recording will be posted here. An Adjunct Scientific Workshop brings together key voices from the clinical and research communities to engage in rich discussion with the FDA. Our goal for this meeting is to address clinical assessment
- [Patient Journey](https://www.fshdsociety.org/patient-journey/)
- [Managing FSHD](https://www.fshdsociety.org/living-with-fshd/managing-fshd/) - Where to start? Managing FSHD looks different for everyone. Some people focus on exercise and mobility, while others need information on pain management, breathing, or adaptive tools. No matter where you are on your journey, we have resources to guide you.
- [Clinical Trials 101](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/clinical-trials-101/) - Learn the basics of clinical trials—what they are, how they work, who’s involved, and what happens in each trial phase.
- [About Us](https://www.fshdsociety.org/about-us/)
- [Thank You For Contacting Us](https://www.fshdsociety.org/contact-us/thank-you-for-contacting-us/)
- [How to Get Started with a Clinical Trial](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/how-to-get-started-with-a-clinical-trial/) - Ready to take part in a clinical trial? Learn how to find trials, check if you're eligible, and improve your chances of getting started.
- [Therapeutic Accelerator](https://www.fshdsociety.org/research-and-clinical-care/therapeutic-accelerator/) - Our Therapeutic Accelerator initiative promises to overcome obstacles to regulatory approval and patient access
- [Project Mercury](https://www.fshdsociety.org/research-and-clinical-care/therapeutic-accelerator/project-mercury/)
- [Social Media](https://www.fshdsociety.org/get-involved/communities/online-communities/social-media/) - Stay Informed & Connected We share the latest news, research, advocacy efforts, and community stories across these platforms: Facebook Instagram LinkedIn Threads X (formerly Twitter) Follow us wherever you prefer to stay up to date!
- [Walk & Roll Every Step Makes a Difference](https://www.fshdsociety.org/get-involved/walk-roll-to-cure-fshd/walk-roll-teams/walk-roll-every-step-makes-a-difference/)
- [Symptoms](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/symptoms/) - FSHD is a neuromuscular disease marked by progressive skeletal muscle weakness, defects in physical components of muscle, and death of muscle cells and tissue.
- [Global FSHD Innovation Hub](https://www.fshdsociety.org/research-and-clinical-care/therapeutic-accelerator/global-fshd-innovation-hub/)
- [Clinical Trial Research Network](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/ctrn/) - The FSHD Clinical Trial Research Network is central to accelerating FSHD treatment development.
- [Clinical Trial Education](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/) - Your go-to resource for FSHD clinical trials—learn how trials work, decide if one is right for you, and explore how to get started, participate, and stay involved.
- [Research & Clinical Trials](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/)
- [ACF Module demo](https://www.fshdsociety.org/acf-module-demo/) - This is an H2 Header Lorem ipsum dolor sit amet, consectetur adipiscing elit. Vestibulum accumsan nisi id mi sollicitudin, at vehicula nisi facilisis. Ut feugiat sapien id purus cursus, sed vehicula justo malesuada. Curabitur varius nunc nec velit vestibulum, vel tincidunt velit sodales. Integer et risus ac libero fermentum vestibulum ut nec neque. Duis tristique
- [ACF Flexible Content Module Directory](https://www.fshdsociety.org/acf-flexible-content-module-directory/)
- [FDA Patient Listening Session: Upper Body Mobility](https://www.fshdsociety.org/get-involved/advocacy/fda-advocacy/fda-patient-listening-session-upper-body-mobility/) - Most think of mobility as synonymous with a person’s ability or inability to walk. However, an overwhelming majority (96% according to multiple studies) of those with FSHD suffer a loss of upper-body mobility, characterized by weakness in the upper arms, shoulders, and trunk. This facet of the disease has an outsized impact on a person’s
- [Communities](https://www.fshdsociety.org/get-involved/communities/) - Creating connections because together we are stronger No matter who you are, you are not alone on your FSHD journey. Connecting with the shared experience of other individuals who understand can provide invaluable support. The FSHD Society is committed to building and maintaining a strong community for individuals with FSHD, their families, and caregivers. You’ll
- [Physical Health](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/fshd-university/physical-health/) - Maintaining muscle function and overall health and fitness are important while we wait for therapeutic drugs to be developed.
- [Coordinating Care](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/coordinating-care/)
- [Financial/Legal Resources](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/financial-legal-resources/)
- [Wellness](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/fshd-university/wellness/) - FSHD takes a toll on mental health, but therapy, coaching, mindfulness, and other techniques can make a difference. Our programs and resources can help.
- [Screening and consent](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/screening-and-consent/) - Learn what to expect during clinical trial pre-screening, screening, and informed consent—and what to do if you don’t get into a trial.
- [Living With FSHD](https://www.fshdsociety.org/living-with-fshd/) - The FSHD Society offers comprehensive resources for navigating life with facioscapulohumeral muscular dystrophy (FSHD). The FSHD Society is committed to supporting individuals living with FSHD throughout their journey, providing the tools and information you need to live your best life.
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/news-media/fshd-radio/)
- [Payor Advocacy](https://www.fshdsociety.org/get-involved/advocacy/payor-advocacy/)
- [About the FSHD Society](https://www.fshdsociety.org/about-us/about-the-fshd-society/) - Discover the FSHD Society’s mission to find treatments and a cure for FSHD. Learn about our vision, values, and impact on research, community, and advocacy.
- [Our Mission](https://www.fshdsociety.org/about-us/about-the-fshd-society/our-mission/) - Our Promise No one should face FSHD alone. The FSHD Society is dedicated to accelerating research toward treatments and a cure while supporting individuals and families every day. This vital work is made possible through the generosity of our community—patients, families, volunteers, and donors who share our vision of a world without FSHD. Our Mission:
- [FDA Advocacy](https://www.fshdsociety.org/get-involved/advocacy/fda-advocacy/)
- [World FSHD Alliance](https://www.fshdsociety.org/get-involved/communities/world-fshd-alliance/)
- [Glossary of Scientific Terms](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/glossary-of-scientific-terms/) - FSHD patient resource for defining scientific terms. This easy reference glossary defines the most commonly used terminology in the field.
- [FSHD Navigator](https://www.fshdsociety.org/living-with-fshd/managing-fshd/fshd-navigator/) - FSHD Navigator is a new program assisting individuals living with FSHD, their families, friends, and care partners that provides a personal, human-centered approach to help folks understand facioscapulohumeral muscular dystrophy, current research and treatments, clinical developments, access to care, etc.
- [Caregiver Self-care](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/caregiver-self-care/)
- [Family Planning](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/family-planning/) - Thinking about growing your family? Congratulations! During one of the most exciting times in family life, you will probably have many more questions than answers. Here are some FSHD-specific resources to get you started. A good primer is this conversation with genetic counselor Julie Cohen. FSHD University held a webinar with Dr. Sanne Vincenten and
- [ICD-10 Code](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/diagnosis/icd-10/)
- [World Alliance Leaders](https://www.fshdsociety.org/get-involved/communities/world-fshd-alliance/world-alliance-leaders/)
- [Our History](https://www.fshdsociety.org/about-us/about-the-fshd-society/our-history/)
- [Are Clinical Trials Right for Me?](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/are-trials-right-for-me/) - Thinking about joining a clinical trial? Learn about the risks, benefits, and key questions to ask when deciding if a trial is right for you.
- [Clinician Journey](https://www.fshdsociety.org/clinician-journey/) - Understanding FSHD Is About More Than Clinical Facts FSHD presents unique challenges for both patients and healthcare professionals. Providing optimal care requires more than just clinical knowledge. The Society is here for clinicians and researchers with resources to help you gain a deeper understanding of the condition, connect with the FSHD community, and stay up
- [Share Your FSHD Story](https://www.fshdsociety.org/get-involved/advocacy/share-your-fshd-story/) - Your story has the power to drive change. By sharing your experience, you help bring visibility to FSHD, strengthen advocacy efforts, and connect with others who understand. Every journey is different, and every voice matters. Whether you want to highlight a challenge, a triumph, or simply what life with FSHD looks like for you, your
- [Adaptive Equipment](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/adaptive-equipment/)
- [After a Trial](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/after-a-trial/) - Find out what happens after a clinical trial—from open-label extensions, study results, drug approval, and access to new medicines.
- [Brand Guidelines](https://www.fshdsociety.org/about-us/media-center/brand-guidelines/) - Our brand is a reflection of the mission and identity of the FSHD Society. To ensure consistency across all communications, we provide these guidelines for using our logos and brand materials correctly. Using the FSHD Society brand Whether you are a partner, journalist, or community member, please follow these guidelines to maintain a clear and
- [Additional Resources](https://www.fshdsociety.org/living-with-fshd/managing-fshd/additional-resources/)
- [Finding Care](https://www.fshdsociety.org/living-with-fshd/managing-fshd/finding-care/) - How to find the healthcare providers you need to best manage your FSHD.
- [How to Help](https://www.fshdsociety.org/get-involved/how-to-help/) - Ways to Make a Difference The fight against FSHD needs you. Explore the many ways you can help and be part of the movement to change lives.
- [Get Involved](https://www.fshdsociety.org/get-involved/) - Get involved with the FSHD Society and community – Connect with patients, families, and resources. Find local chapters, donate and raise funds, and advocate.
- [Understanding FSHD](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/)
- [News & Media](https://www.fshdsociety.org/news-media/) - Stay informed and connected with the latest developments in the FSHD community. This is your go-to resource for updates on research news, community stories, and FSHD Society initiatives. We encourage you to stay connected with the FSHD Society to power the path forward together. Your engagement helps us raise awareness, support our community, and accelerate
- [What to expect](https://www.fshdsociety.org/research-and-clinical-care/research-and-clinical-trials/clinical-trial-education/what-to-expect/) - Wondering what it’s like to take part in a clinical trial? This page takes you through what to expect during a clinical trial and at your study visits. What kinds of activities could I be asked to do during a clinical trial? Most of the time, you’ll need to go to in-person study visits during
- [Impact Report - 2024](https://www.fshdsociety.org/about-us/about-the-fshd-society/financials/impact-report-2024/) - The FSHD Society earned eleven consecutive 4-star awards from Charity Navigator, placing us among the highest-performing U.S. charities.
- [Medical Issues](https://www.fshdsociety.org/living-with-fshd/managing-fshd/clinical-care/medical-issues/) - Learn more about important health issues for FSHD patients, click on the boxes below to learn about specific FSHD health conditions & symptoms.
- [Join Us](https://www.fshdsociety.org/join-us/) - Join us here! When you sign up to receive email alerts, you can expect to receive valuable information about research, education and more!
- [Privacy Policy](https://www.fshdsociety.org/privacy-policy/) - Review our privacy policy here. The FSHD Society respects the privacy of all visitors to our website. We will not sell, share or distribute your information.
- [Our Partners](https://www.fshdsociety.org/about-us/about-the-fshd-society/our-partners/) - Accomplishing our mission of accelerating treatments to patients while empowering our families would not be possible without collaboration and partnering with organizations around the world. These corporate partners share our vision and values and play critical roles in helping to achieve our mission by collaborating with us in research, providing funding, and participating in our
- [Diagnosis](https://www.fshdsociety.org/living-with-fshd/understanding-fshd/diagnosis/) - The first step in diagnosing FSHD is a visit with a doctor for a physical exam. An initial diagnosis is based on the pattern of muscles affected.
- [Voice of the Patient Report](https://www.fshdsociety.org/get-involved/advocacy/fda-advocacy/vopf/) - On June 29, 2020, the FSHD Society hosted the Voice of the Patient Forum. For those familiar with FDA meetings, this was our EL-PFDD, a Patient-Focused Drug Development meeting. The goal was to educate the FDA and other key groups about how FSHD impacts you and your loved ones. In the months leading up to
- [Media Center](https://www.fshdsociety.org/about-us/media-center/) - The FSHD Society media center is a resource for background information and media inquiries. Whether you’re a journalist, media professional, or partner, we’re here to help you access the information you need about FSHD and our work. About the FSHD Society Founded in 1991 by people living with FSHD, the Society is the world’s largest
- [Careers](https://www.fshdsociety.org/careers/)
- [Inclusivity and Equity](https://www.fshdsociety.org/statement-on-inclusivity-and-equity/) - At the FSHD Society, inclusivity is part of our organizational DNA. We stand firmly against racism and all forms of discrimination as we fight for the lives and well-being of... Read More »

## Library Items

- [Living Beside FSHD: World FSHD Day Stories](https://www.fshdsociety.org/library/living-beside-fshd/)
- [Three Years. Ten Countries. One Shared Mission…What We Built Together ](https://www.fshdsociety.org/library/projectmercury-three-years-reflection/)
- [Volunteer Spotlight – Rick Whitehead - Knoxville, TN ](https://www.fshdsociety.org/library/volunteer-spotlight-rick-whitehead-knoxville-tn/)
- [Chasing Justice and Butterflies: Ed Barocas Reflects on a Life of Purpose, Humor, and Hope](https://www.fshdsociety.org/library/barocasblog/)
- [Colleen's Story: World FSHD Day Stories](https://www.fshdsociety.org/library/colleens-story-world-fshd-day-stories/)
- [Why I joined BetterLife: A Q&A with Robert (Bob) Humphreys Jr.](https://www.fshdsociety.org/library/why-i-joined-betterlife-a-qa-with-robert-bob-humphreys-jr/)
- [A Mother's Perspective: World FSHD Day Stories](https://www.fshdsociety.org/library/kinsley-erin/)
- [My FSHD Journey: From Fear to Hope, World FSHD Day Stories](https://www.fshdsociety.org/library/taylor-quigg-story/)
- [Novartis Announces Positive Biomarker Results for Del-brax in FSHD](https://www.fshdsociety.org/library/novartis-announces-positive-biomarker-results-for-del-brax-in-fshd/)
- [College is Possible, Preparation is Necessary](https://www.fshdsociety.org/library/colege-prep-considerations/)
- [What a New Study on FSHD and Mortality Means for Our Community](https://www.fshdsociety.org/library/mortality-new-study/)
- [A Glimpse into Mental Health in FSHD: Early Insights from BetterLife](https://www.fshdsociety.org/library/mental-health-betterlife/)
- [Yoga for FSHD](https://www.fshdsociety.org/library/yoga-for-fshd/)
- [Travel Without Limits: Exploring the World with FSHD, FSHD University, Mollie Garrett](https://www.fshdsociety.org/library/travel-without-limits-exploring-the-world-with-fshd-fshd-university-mollie-garrett/)
- [Manifestaciones cardíacas en FSHD](https://www.fshdsociety.org/library/manifestaciones-cardiacas-en-fshd/)
- [Hormona de crecimiento en Distrofias Musculares](https://www.fshdsociety.org/library/hormona-de-crecimiento-en-distrofias-musculares/)
- [Embarazo en FSHD](https://www.fshdsociety.org/library/embarazo-en-fshd/)
- [Fatiga en FSHD](https://www.fshdsociety.org/library/fatiga-en-fshd/)
- [Trastornos respiratorios del sueño en FSHD](https://www.fshdsociety.org/library/trastornos-respiratorios-del-sueno-en-fshd/)
- [Estimulación eléctrica muscular](https://www.fshdsociety.org/library/estimulacion-electrica-muscular/)
- [Terapia génica en FSHD](https://www.fshdsociety.org/library/terapia-genica-en-fshd/)
- [Anticipación genética en FSHD](https://www.fshdsociety.org/library/anticipacion-genetica-en-fshd/)
- [Manifestaciones extramusculares en FSHD](https://www.fshdsociety.org/library/manifestaciones-extramusculares-en-fshd/)
- [El dolor en la FSHD](https://www.fshdsociety.org/library/el-dolor-en-la-fshd/)
- [Terapia física](https://www.fshdsociety.org/library/terapia-fisica/)
- [Fisioterapia en la FSHD](https://www.fshdsociety.org/library/fisioterapia-en-la-fshd/)
- [Apoyo psicosocial para familias con hijos recién diagnosticados](https://www.fshdsociety.org/library/apoyo-psicosocial-para-familias-con-hijos-recien-diagnosticados/)
- [Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion, FSHD Straight Talk](https://www.fshdsociety.org/library/expanded-access-crash-course-with-ally-roets-and-dr-michelle-mellion-fshd-straight-talk/)
- [FSHD Advocate: 2026 Issue 1: The Tipping Point, What you do matters](https://www.fshdsociety.org/library/fshd-advocate-2026-issue-1-the-tipping-point-what-you-do-matters/)
- [Industry Collaborative Launch](https://www.fshdsociety.org/library/industry-collaborative-launch/)
- [Breaking News from Avidity Biosciences](https://www.fshdsociety.org/library/breaking-news-from-avidity-biosciences/)
- [Breaking Down Avidity’s FORTITUDE Phase 1/2 Trial Update](https://www.fshdsociety.org/library/breaking-down-aviditys-fortitude-phase-1-2-trial-update/)
- [Mirecule Expands Strategic FSHD Collaboration with Sanofi](https://www.fshdsociety.org/library/mirecule-expands-strategic-fshd-collaboration-with-sanofi/)
- [Roche stops development of Emugrobart](https://www.fshdsociety.org/library/roche-stops-development-of-emugrobart/)
- [Letter to the FSHD Community from Roche](https://www.fshdsociety.org/library/letter-to-the-fshd-community-from-roche/)
- [Treatments for FSHD: A broader view](https://www.fshdsociety.org/library/treatments-for-fshd-a-broader-view/)
- [FSHD Advocate 2020 Issue 2](https://www.fshdsociety.org/library/fshd-advocate-2020-issue-2/)
- [FSHD Fact Sheet](https://www.fshdsociety.org/library/fshd-fact-sheet/)
- [171st ENMC International Workshop- Standards of care and management of FSHD](https://www.fshdsociety.org/library/171st-enmc-international-workshop-standards-of-care-and-management-of-fshd-2/)
- [Evidence-based FSHD care guideline AAN tools and materials - link](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-aan-tools-and-materials-link/)
- [Evidence-based FSHD care guideline – Summary for patients & families - link](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-summary-for-patients-families-link/)
- [Evidence-based FSHD care guideline – Summary for clinicians - link](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-summary-for-clinicians-link/)
- [FSHD Society webinar with Dr Rabi Tawil](https://www.fshdsociety.org/library/fsh-society-webinar-with-dr-rabi-tawil/)
- [Evidence-based FSHD care guideline + online resources](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-online-resources/)
- [Resources for FSHD patients & families](https://www.fshdsociety.org/library/resources-for-fshd-patients-families/)
- [About FSHD (in Spanish; in Chinese)](https://www.fshdsociety.org/library/about-fshd-in-spanish-in-chinese/)
- [Physical Therapy for FSHD brochure (in Chinese)](https://www.fshdsociety.org/library/physical-therapy-for-fshd-brochure-in-chinese/)
- [Consent Form for Participation in a Neuromuscular Research Study](https://www.fshdsociety.org/library/consent-form-for-participation-in-a-neuromuscular-research-study/)
- [FSHD Muscle Cell Distribution](https://www.fshdsociety.org/library/fshd-muscle-cell-distribution/)
- [Muscle Surgery and Blood Samples from Patients with FSHD](https://www.fshdsociety.org/library/muscle-surgery-and-blood-samples-from-patients-with-fshd/)
- [May 2012: A Long ncRNA Links Copy Number Variation to a Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy](https://www.fshdsociety.org/library/may-2012-a-long-ncrna-links-copy-number-variation-to-a-polycomb-trithorax-epigenetic-switch-in-fshd-muscular-dystrophy/)
- [July 2012: FSHD Family Studies of DUX4 Expression](https://www.fshdsociety.org/library/july-2012-fshd-family-studies-of-dux4-expression/)
- [Sept 2014: FSH Society helps researchers develop an inducible DUX4 mouse model](https://www.fshdsociety.org/library/sept-2014-fsh-society-helps-researchers-develop-an-inducible-dux4-mouse-model/)
- [Orphanet Report Series: Prevalence of Rare Diseases](https://www.fshdsociety.org/library/orphanet-report-series-prevalence-of-rare-diseases/)
- [FSH Society Fundraising Workshop](https://www.fshdsociety.org/library/fsh-society-fundraising-workshop/)
- [FSHDselfies Campaign](https://www.fshdsociety.org/library/fshdselfies-campaign/)
- [Progress Towards Clinical Trials](https://www.fshdsociety.org/library/progress-towards-clinical-trials/)
- [Consensus model for FSHD identifies opportunities for therapy](https://www.fshdsociety.org/library/consensus-model-for-fshd-identifies-opportunities-for-therapy/)
- [Unlocking the Clinical Trial Toolbox](https://www.fshdsociety.org/library/unlocking-the-clinical-trial-toolbox/)
- [Modeling FSHD in zebrafish](https://www.fshdsociety.org/library/modeling-fshd-in-zebrafish/)
- [FSHD Advocate 2023 Issue 2](https://www.fshdsociety.org/library/fshd-advocate-2023-issue-2/)
- [FSHD Advocate 2023 Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2023-issue-1/)
- [FSHD Advocate 2022 Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2022-issue-3/)
- [Evidence-based FSHD care guideline – Summary for clinicians](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-summary-for-clinicians/)
- [Evidence-based FSHD care guideline – Summary for patients & families](https://www.fshdsociety.org/library/evidence-based-fshd-care-guideline-summary-for-patients-families/)
- [171st ENMC International Workshop- Standards of care and management of FSHD](https://www.fshdsociety.org/library/171st-enmc-international-workshop-standards-of-care-and-management-of-fshd/)
- [Resource list for Navigating Intimate Relationships](https://www.fshdsociety.org/library/resource-list-for-navigating-intimate-relationships/)
- [Resource list for finding information and help](https://www.fshdsociety.org/library/resource-list-for-finding-information-and-help/)
- [The decision to stop working](https://www.fshdsociety.org/library/the-decision-to-stop-working/)
- [Best Practice Guidelines on Genetic Diagnostics of FSHD](https://www.fshdsociety.org/library/best-practice-guidelines-on-genetic-diagnostics-of-fshd/)
- [Physical Activity and Exercise in FSHD (2012) by Craig McDonald, MD](https://www.fshdsociety.org/library/physical-activity-and-exercise-in-fshd-2012-by-craig-mcdonald-md/)
- [Map of the FSHD-linked Genes](https://www.fshdsociety.org/library/fshd-linked-genes-map/)
- [Summary of 2013](https://www.fshdsociety.org/library/summary-of-2013/)
- [April 2008 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/april-2008-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [May 2009 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/may-2009-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [April 2010 Testimony Submitted to US House of Representatives Appropriations Subcommittee](https://www.fshdsociety.org/library/april-2010-testimony-submitted-to-us-house-of-representatives-appropriations-subcommittee/)
- [April 2010 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/april-2010-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [April 2011 Testimony Submitted to US Senate Appropriates Subcommittee](https://www.fshdsociety.org/library/april-2011-testimony-submitted-to-us-senate-appropriates-subcommittee/)
- [March 2012 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2012-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [April 2012 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/april-2012-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [March 2013 Testimony Submitted to U.S. House Appropriations Committee](https://www.fshdsociety.org/library/march-2013-testimony-submitted-to-u-s-house-appropriations-committee/)
- [May 2013 Testimony Submitted to U.S. Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/may-2013-testimony-submitted-to-u-s-senate-appropriations-subcommittee/)
- [March 2014 Testimony Submitted to U.S. House Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2014-testimony-submitted-to-u-s-house-appropriations-subcommittee/)
- [May 2014 Testimony Submitted to U.S. Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/may-2014-testimony-submitted-to-u-s-senate-appropriations-subcommittee/)
- [March 2015 Testimony Submitted to U.S. Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2015-testimony-submitted-to-u-s-senate-appropriations-subcommittee/)
- [April 2015 Testimony Submitted to the US House Appropriations Committee](https://www.fshdsociety.org/library/april-2015-testimony-submitted-to-the-us-house-appropriations-committee/)
- [FSH Society FY2017 Written Testimony before the US Senate Appropriations Committee on NIH Research, April 16, 2016](https://www.fshdsociety.org/library/fsh-society-fy2017-written-testimony-before-the-us-senate-appropriations-committee-on-nih-research-april-16-2016/)
- [FSH Society FY2017 Written Testimony before the US House Appropriations Committee on NIH Research, April 16, 2016](https://www.fshdsociety.org/library/fsh-society-fy2017-written-testimony-before-the-us-house-appropriations-committee-on-nih-research-april-16-2016/)
- [#FSHDselfies](https://www.fshdsociety.org/library/fshdselfies/)
- [Natural History Studies](https://www.fshdsociety.org/library/natural-history-studies/)
- [Genetically Similar Epigenetically Different](https://www.fshdsociety.org/library/genetically-similar-epigenetically-different/)
- [Honoring the Memory of Stephen Jacobsen, Karen Johnsen and William Michael](https://www.fshdsociety.org/library/honoring-the-memory-of-stephen-jacobsen-karen-johnsen-and-william-michael/)
- [FY2019 Written Testimony to U.S. Senate Appropriations on NIH Funding](https://www.fshdsociety.org/library/fy2019-written-testimony-to-u-s-senate-appropriations-on-nih-funding/)
- [March 2007 Testimony Submitted to US Senate Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2007-testimony-submitted-to-us-senate-appropriations-subcommittee/)
- [March 2007 Testimony Submitted to US House of Representatives Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2007-testimony-submitted-to-us-house-of-representatives-appropriations-subcommittee/)
- [March 2007 Testimony Submitted to Subcommittee on Labor, Health and Human Services](https://www.fshdsociety.org/library/march-2007-testimony-submitted-to-subcommittee-on-labor-health-and-human-services/)
- [March 2008 Testimony Submitted to US House of Representatives Appropriations Subcommittee](https://www.fshdsociety.org/library/march-2008-testimony-submitted-to-us-house-of-representatives-appropriations-subcommittee/)
- [Fact Sheet on FSHD / infantile-onset FSHD](https://www.fshdsociety.org/library/fact-sheet-on-fshd-infantile-onset-fshd/)
- [Health Tips](https://www.fshdsociety.org/library/health-tips/)
- [Fall Prevention, Part 2 with Frank Hanley, Feeling Fit with FSHD](https://www.fshdsociety.org/library/fall-prevention-part-2-with-frank-hanley-feeling-fit-with-fshd/)
- [Preventing Falls, Part 1: Moving with Balance, Awareness, and Intention, FSHD University with Frank Hanley](https://www.fshdsociety.org/library/preventing-falls-part-1-moving-with-balance-awareness-and-intention-fshd-university-with-frank-hanley/)
- [Early Onset Insight: Findings from Dr. Erasmus’ 5yr Early Onset Study - Oct 2025 Parents' Roundtable](https://www.fshdsociety.org/library/early-onset-insight-findings-from-dr-erasmus-5yr-early-onset-study-oct-2025-parents-roundtable/)
- [Whole Body MRI Measures in Pediatric FSHD Patients - November 2025 Parents' Roundtable](https://www.fshdsociety.org/library/whole-body-mri-measures-in-pediatric-fshd-patients-november-2025-parents-roundtable/)
- [The Burden of FSHD - FSHD University with Amanda Hill and June Kinoshita](https://www.fshdsociety.org/library/the-burden-of-fshd-fshd-university-with-amanda-hill-and-june-kinoshita/)
- [Understanding Gene Therapy in FSHD, FSHD University](https://www.fshdsociety.org/library/understanding-gene-therapy-in-fshd-fshd-university/)
- [2025 Annual Drug Development Update with Dr Lawrence Korngut](https://www.fshdsociety.org/library/2025-annual-drug-development-update-with-dr-lawrence-korngut/)
- [AMA: Answering Your Questions About FSHD](https://www.fshdsociety.org/library/ama-answering-your-questions-about-fshd/)
- [Mind-Body Connection: Using Mindfulness & Relaxation Techniques to Improve Well-being with Sixto](https://www.fshdsociety.org/library/mind-body-connection-using-mindfulness-relaxation-techniques-to-improve-well-being-with-sixto/)
- [FSHD 101: An Easy Explanation](https://www.fshdsociety.org/library/fshd-101-an-easy-explanation/)
- [Occupational Therapy for Real Life: Home/Daily Living Solutions for People w/ FSHD, FSHD University](https://www.fshdsociety.org/library/occupational-therapy-for-real-life-home-daily-living-solutions-for-people-w-fshd-fshd-university/)
- [Life Insurance Options for Individuals with FSHD with Robert Bland, CEO LifeQuote, FSHD University](https://www.fshdsociety.org/library/life-insurance-options-for-individuals-with-fshd-with-robert-bland-ceo-lifequote-fshd-university/)
- [Passport to Readiness: Preparing for Future FSHD Treatments - Ashley Ferreira, FSHD Society](https://www.fshdsociety.org/library/passport-to-readiness-preparing-for-future-fshd-treatments-ashley-ferreira-fshd-society/)
- [Employment Rights 101: Disability Protections and Navigating the Workforce with FSHD, Marisa Spain](https://www.fshdsociety.org/library/employment-rights-101-disability-protections-and-navigating-the-workforce-with-fshd-marisa-spain/)
- [Sarepta’s letter to the FSHD community](https://www.fshdsociety.org/library/sareptas-letter-to-the-fshd-community/)
- [How do hormones impact muscle function in FSHD?](https://www.fshdsociety.org/library/how-do-hormones-impact-muscle-function-in-fshd/)
- [The Better Nutrition for FSHD Diet](https://www.fshdsociety.org/library/the-better-nutrition-for-fshd-diet/)
- [FEMA's emegency preparedness for older adults](https://www.fshdsociety.org/library/femas-emegency-preparedness-for-older-adults/)
- [Organizations Join Forces to Map How Human Muscle Regenerates](https://www.fshdsociety.org/library/organizations-join-forces-to-map-how-human-muscle-regenerates/)
- [Scholar Rock Highlights 2026 Strategic Priorities](https://www.fshdsociety.org/library/scholar-rock-2026-priorities/)
- [Epicrispr Reports Early Clinical Activity and Favorable Safety Profile in First-in-Human Epigenetic Editing Study for FSHD](https://www.fshdsociety.org/library/epicrispr-reports-early-clinical-activity-and-favorable-safety-profile-in-first-in-human-epigenetic-editing-study-for-fshd/)
- [RESTEM Announces First-Patient-Dosed in the Phase 1/2a Study of Restem-L in Facioscapulohumeral Muscular Dystrophy](https://www.fshdsociety.org/library/restem-announces-first-patient-dosed-in-the-phase-1-2a-study-of-restem-l-in-facioscapulohumeral-muscular-dystrophy/)
- [FSHD Advocate 2018 Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2018-issue-3/)
- [FSHD Advocate 2019 Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2019-issue-1/)
- [FSHD Advocate 2019 Issue 2](https://www.fshdsociety.org/library/fshd-advocate-2019-issue-2/)
- [A physiatric approach to FSH muscular dystrophy ](https://www.fshdsociety.org/library/a-physiatric-approach-to-fsh-muscular-dystrophy/)
- [Tips for air travel with a power wheelchair](https://www.fshdsociety.org/library/tips-for-air-travel-with-a-power-wheelchair/)
- [About FSHD](https://www.fshdsociety.org/library/about-fshd/)
- [Physical Therapy for FSHD Brochure](https://www.fshdsociety.org/library/physical-therapy-for-fshd-brochure/)
- [A Guide for Friends and Family](https://www.fshdsociety.org/library/a-guide-for-friends-and-family/)
- [A Guide for Schools](https://www.fshdsociety.org/library/a-guide-for-schools/)
- [Managing FSHD: One Patient’s Perspective](https://www.fshdsociety.org/library/managing-fshd-one-patients-perspective/)
- [FSHD and Exercise (2014) by Julie Hershberg, PT](https://www.fshdsociety.org/library/fshd-and-exercise-2014-by-julie-hershberg-pt/)
- [Breathing Health in FSHD](https://www.fshdsociety.org/library/breathing-health-in-fshd/)
- [Scapular Fixation Surgery](https://www.fshdsociety.org/library/scapular-fixation-surgery/)
- [Multicenter infantile onset FSHD study](https://www.fshdsociety.org/library/multicenter-infantile-onset-fshd-study/)
- [Update on PT and Exercise](https://www.fshdsociety.org/library/update-on-pt-and-exercise/)
- [FSHD & Nutrition](https://www.fshdsociety.org/library/fshd-nutrition/)
- [Letter requesting insurance coverage for genetic testing (Word doc templates)](https://www.fshdsociety.org/library/letter-requesting-insurance-coverage-for-genetic-testing-word-doc-templates/)
- [Guidelines for Physical Therapists Treating Clients with Neuromuscular Disorders](https://www.fshdsociety.org/library/guidelines-for-physical-therapists-treating-clients-with-neuromuscular-disorders/)
- [An Overview of Anesthetic Concerns by Raymond Huml](https://www.fshdsociety.org/library/an-overview-of-anesthetic-concerns-by-raymond-huml/)
- [Early-onset (infantile) FSHD Fact Sheet](https://www.fshdsociety.org/library/early-onset-infantile-fshd-fact-sheet/)
- [Medical Equipment: Access Solutions and Respiratory Therapy by Howard Chabner](https://www.fshdsociety.org/library/medical-equipment-access-solutions-and-respiratory-therapy-by-howard-chabner/)
- [You Are Not Alone. A Guide for the Newly Diagnosed](https://www.fshdsociety.org/library/you-are-not-alone-a-guide-for-the-newly-diagnosed/)
- [FSHD and Social Support: A Guide for Friends and Family](https://www.fshdsociety.org/library/fshd-and-social-support-a-guide-for-friends-and-family/)
- [A Guide for Schools](https://www.fshdsociety.org/library/a-guide-for-schools-2/)
- [Dealing with Physical Decline from Muscular Dystrophy, by Don Nemke](https://www.fshdsociety.org/library/dealing-with-physical-decline-from-muscular-dystrophy-by-don-nemke/)
- [Muscle Activation Exercises with Lynnette Rasmussen FSH Society](https://www.fshdsociety.org/library/muscle-activation-exercises-with-lynnette-rasmussen-fsh-society/)
- [FSH Society Michigan Meeting – Waking up your muscles](https://www.fshdsociety.org/library/fsh-society-michigan-meeting-waking-up-your-muscles/)
- [Introduction to yoga for people with FSHD](https://www.fshdsociety.org/library/fsh-society-introduction-to-yoga-for-people-with-fshd/)
- [Dr. Anthony Romeo describes scapularthoracic fusion surgery for FSHD](https://www.fshdsociety.org/library/dr-anthony-romeo-describes-scapularthoracic-fusion-surgery-for-fshd/)
- [Facial surgery methods for Facioscapulohumeral Muscular Dystrophy](https://www.fshdsociety.org/library/facial-surgery-methods-for-facioscapulohumeral-muscular-dystrophy/)
- [FSHD Society Research Seminars](https://www.fshdsociety.org/library/fsh-society-research-seminars/)
- [FSHD Connect 2014](https://www.fshdsociety.org/library/fshd-connect-2014/)
- [2019 FSHD Advocate Issue 3](https://www.fshdsociety.org/library/2019-fshd-advocate-issue-3/)
- [FSHD Advocate 2020 Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2020-issue-1/)
- [100 Questions and Answers About Muscular Dystrophy (First Edition, 2020)](https://www.fshdsociety.org/library/100-questions-answers-about-muscular-dystrophy-first-edition-2020/)
- [Industry Collaborative for Therapy Development in FSHD](https://www.fshdsociety.org/library/industry-collaborative-for-therapy-development-in-fshd/)
- [Voice of the Patient Report](https://www.fshdsociety.org/library/voice-of-the-patient-report/)
- [FSHD Advocate 2020 Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2020-issue-3/)
- [FSHD Advocate 2021 Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2021-issue-1/)
- [Notes on spinal and scapular surgery](https://www.fshdsociety.org/library/notes-on-spinal-and-scapular-surgery/)
- [FSHD Advocate 2021 Issue 2](https://www.fshdsociety.org/library/fshd-advocate-2021-issue-2/)
- [FSHD Advocate 2021 Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2021-issue-3/)
- [FSHD Advocate 2022 Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2022-issue-1/)
- [FSHD Advocate 2022 Issue 2](https://www.fshdsociety.org/library/fshd-advocate-2022-issue-2/)
- [Tratamiento génico en FSHD](https://www.fshdsociety.org/library/tratamiento-genico-en-fshd/)
- [Physical therapy for shoulder dyskinesia in FSHD](https://www.fshdsociety.org/library/physical-therapy-for-shoulder-dyskinesia-in-fshd/)
- [Understanding and navigating Medicare](https://www.fshdsociety.org/library/understanding-and-navigating-medicare/)
- [FSHD Advocate 2023 Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2023-issue-3/)
- [FSHD Advocate 2024, Issue 1](https://www.fshdsociety.org/library/fshd-advocate-2024-issue-1/)
- [Yoga adapted for FSHD](https://www.fshdsociety.org/library/yoga-adapted-for-fshd/)
- [Understanding your FSHD](https://www.fshdsociety.org/library/understanding-your-fshd/)
- [FSHD Representation in Film Fest Favorite ‘Good Bad Things’](https://www.fshdsociety.org/library/fshd-representation-in-film-fest-favorite-good-bad-things/)
- [Every person’s effort takes us closer to the tipping point](https://www.fshdsociety.org/library/every-persons-effort-takes-us-closer-to-the-tipping-point/)
- [Statins (cholesterol-lowering drugs) and muscular dystrophy](https://www.fshdsociety.org/library/statins-cholesterol-lowering-drugs-and-muscular-dystrophy/)
- [Vita Therapeutics’ cell-based therapy update](https://www.fshdsociety.org/library/vita-therapeutics-cell-based-therapy-update/)
- [Women’s health with Dr. Loralei Thornberg](https://www.fshdsociety.org/library/womens-health-with-dr-loralei-thornberg/) - In December 2023, our Women on Wellness Zoom group hosted Loralei Thornberg, MD, an ob/gyn at the University of Rochester. She is a rock star! She addressed issues in women's health and specifically in women with disabilities with authority, empathy, and humor. Her talk covered topics from menstruation to menopause, birth control, pregnancy, childbirth, and
- [FSHD advocate in film about Apple Personal Voice](https://www.fshdsociety.org/library/fshd-advocate-in-film-about-apple-personal-voice/)
- [The children of FSHD – they exist, too](https://www.fshdsociety.org/library/the-children-of-fshd-they-exist-too/)
- [Shaking Qigong to relax your body](https://www.fshdsociety.org/library/shaking-qigong-to-relax-your-body/)
- [Engineering new muscles](https://www.fshdsociety.org/library/engineering-new-muscles/)
- [Clinical care vs. clinical research](https://www.fshdsociety.org/library/clinical-care-vs-clinical-research/)
- [Kitchen Confidential](https://www.fshdsociety.org/library/kitchen-confidential/)
- [2023 International Research Congress summary](https://www.fshdsociety.org/library/2023-international-research-congress-summary/)
- [A holistic approach](https://www.fshdsociety.org/library/a-holistic-approach/)
- [Orphan drug designation for Epic Bio’s FSHD candidate](https://www.fshdsociety.org/library/orphan-drug-designation-for-epic-bios-fshd-candidate/)
- [When I finally discovered the benefits of support groups](https://www.fshdsociety.org/library/when-i-finally-discovered-the-benefits-of-support-groups/)
- [Holistic approaches to fitness and wellbeing](https://www.fshdsociety.org/library/holistic-approaches-to-fitness-and-wellbeing/)
- [Fall vaccine guide](https://www.fshdsociety.org/library/fall-vaccine-guide/)
- [An ounce of prevention…](https://www.fshdsociety.org/library/an-ounce-of-prevention/)
- [Eye Care Tips and Tricks for FSHD](https://www.fshdsociety.org/library/eye-care-tips-and-tricks-for-fshd/)
- [Making strides toward stem cell therapies](https://www.fshdsociety.org/library/making-strides-toward-stem-cell-therapies/)
- [Falling backwards and what to do about it](https://www.fshdsociety.org/library/falling-backwards-and-what-to-do-about-it/)
- [Walkers and Wheelchairs 101](https://www.fshdsociety.org/library/walkers-and-wheelchairs-101/)
- [New global coalition to speed delivery of therapies for FSHD](https://www.fshdsociety.org/library/new-global-coalition-to-speed-delivery-of-therapies-for-fshd/)
- [Adventures with a robotic leg brace](https://www.fshdsociety.org/library/adventures-with-a-robotic-leg-brace/)
- [Managing Fatigue](https://www.fshdsociety.org/library/managing-fatigue/)
- [Raising our voice to raise our seats!](https://www.fshdsociety.org/library/raising-our-voice-to-raise-our-seats/)
- [New frontiers in muscle regeneration for FSHD](https://www.fshdsociety.org/library/new-frontiers-in-muscle-regeneration-for-fshd/)
- [What to do in a crisis](https://www.fshdsociety.org/library/what-to-do-in-a-crisis/)
- [Your practical guide to clinical trials](https://www.fshdsociety.org/library/your-practical-guide-to-clinical-trials/)
- [Feeling Fit: Exercising your hands and arms](https://www.fshdsociety.org/library/feeling-fit-exercising-your-hands-and-arms/)
- [About early-onset FSHD](https://www.fshdsociety.org/library/about-early-onset-fshd/)
- [How postural changes lead to pain](https://www.fshdsociety.org/library/how-postural-changes-lead-to-pain/)
- [Feeling Fit with Lonwabo Nene](https://www.fshdsociety.org/library/feeling-fit-with-lonwabo-nene/)
- [(Cautious) optimism in FSHD drug development](https://www.fshdsociety.org/library/cautious-optimism-in-fshd-drug-development/)
- [Stay warm and safe](https://www.fshdsociety.org/library/stay-warm-and-safe/)
- [Feeling Fit with low-impact seated exercises](https://www.fshdsociety.org/library/feeling-fit-with-low-impact-seated-exercises/)
- [Feeling Fit: Exercises for the neck and shoulders](https://www.fshdsociety.org/library/feeling-fit-exercises-for-the-neck-and-shoulders/) - Disclaimer: Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider. If anything hurts, stop! In the November "Feeling Fit" sessions, Frank Hanley introduces a variety of neck and shoulder exercises and reviews the qigong breathing techniques and abdominal (core) exercises that he
- [Bowel and urinary issues in FSHD](https://www.fshdsociety.org/library/bowel-and-urinary-issues-in-fshd/)
- [International research round-up](https://www.fshdsociety.org/library/international-research-round-up/)
- [Abdominal and breathing exercises for FSHD](https://www.fshdsociety.org/library/abdominal-and-breathing-exercises-for-fshd/)
- [Transitioning to Adulthood](https://www.fshdsociety.org/library/transitioning-to-adulthood/)
- [My Superpower – Why I volunteer for clinical trials](https://www.fshdsociety.org/library/my-superpower-why-i-volunteer-for-clinical-trials/)
- [Changing mindset about assistive technologies](https://www.fshdsociety.org/library/changing-mindset-about-assistive-technologies/)
- [Design to thrive](https://www.fshdsociety.org/library/design-to-thrive/)
- [About ankle-foot orthoses (AFOs)](https://www.fshdsociety.org/library/about-ankle-foot-orthoses-afos/)
- [A delicate matter for female travelers with FSHD](https://www.fshdsociety.org/library/a-delicate-matter-for-female-travelers-with-fshd/)
- [Pain management in FSHD](https://www.fshdsociety.org/library/pain-management-in-fshd/)
- [Exercise for hip flexors Part 2](https://www.fshdsociety.org/library/exercise-for-hip-flexors-part-2/)
- [Breathing with FSHD](https://www.fshdsociety.org/library/breathing-with-fshd/)
- [Treating FSHD: A Broader View with Nicol Voermans, MD PhD, and Nathaniël Rasing, MD](https://www.fshdsociety.org/library/treating-fshd-a-broader-view-with-nicol-voermans-md-phd-and-nathaniel-rasing-md/)
- [FSHD University Annual Drug Update](https://www.fshdsociety.org/library/fshd-university-annual-drug-update-2/)
- [Dr. Bakri Elsheikh: What Every Newly Diagnosed Person Should Know](https://www.fshdsociety.org/library/dr-bakri-elsheikh-what-every-newly-diagnosed-person-should-know/)
- [Epic Bio’s FSHD Program](https://www.fshdsociety.org/library/epic-bios-fshd-program/)
- [Bowel and Urinary issues in FSHD](https://www.fshdsociety.org/library/bowel-and-urinary-issues-in-fshd-2/)
- [Nutritional and exercise interventions for FSHD](https://www.fshdsociety.org/library/nutritional-and-exercise-interventions-for-fshd/)
- [Resilience and FSHD](https://www.fshdsociety.org/library/resilience-and-fshd/)
- [Changing Our Mindset About Assistive Technologies](https://www.fshdsociety.org/library/changing-our-mindset-about-assistive-technologies/)
- [Managing pain in individuals with FSHD](https://www.fshdsociety.org/library/managing-pain-in-individuals-with-fshd/)
- [Shoulder dyskinesia in FSH muscular dystrophy](https://www.fshdsociety.org/library/shoulder-dyskinesia-in-fsh-muscular-dystrophy/)
- [Nutrition and FSHD with Matt Beke](https://www.fshdsociety.org/library/nutrition-and-fshd-with-matt-beke/)
- [Reproductive genetic counseling and pregnancy](https://www.fshdsociety.org/library/reproductive-genetic-counseling-and-pregnancy/)
- [The Mattering Effect: How Feeling Valued and Adding Value Shape our Lives](https://www.fshdsociety.org/library/the-mattering-effect-how-feeling-valued-and-adding-value-shape-our-lives-2/)
- [FSHD Sleep and pain study by Heloise Hoffmann](https://www.fshdsociety.org/library/fshd-sleep-and-pain-study-by-heloise-hoffmann/)
- [Dynamic sitting: Exercising in a seated position](https://www.fshdsociety.org/library/dynamic-sitting-exercising-in-a-seated-position/)
- [Webinar Clinical Trials 101 with Dr Tahseen Mozaffar](https://www.fshdsociety.org/library/webinar-clinical-trials-101-with-dr-tahseen-mozaffar/)
- [The Job Talk with Lynn Stevens](https://www.fshdsociety.org/library/the-job-talk-with-lynn-stevens/)
- [Managing difficult emotions and experiences, with Dr. David Younger](https://www.fshdsociety.org/library/managing-difficult-emotions-and-experiences-with-dr-david-younger/)
- [Early onset FSHD with Tina Duong](https://www.fshdsociety.org/library/early-onset-fshd-with-tina-duong/)
- [Orthotics for Knee Hyperextension and Spine issues in FSHD](https://www.fshdsociety.org/library/orthotics-for-knee-hyperextension-and-spine-issues-in-fshd/)
- [Q and A about FSH muscular dystrophy with Kathryn Wagner, MD PhD](https://www.fshdsociety.org/library/qa-about-fsh-muscular-dystrophy-with-kathryn-wagner-md-phd/)
- [Scapular surgery for FSH muscular dystrophy](https://www.fshdsociety.org/library/scapular-surgery-for-fsh-muscular-dystrophy/)
- [Living well with FSHD and thriving in difficult times](https://www.fshdsociety.org/library/living-well-with-fshd-and-thriving-in-difficult-times/)
- [Family Communication with Dr. Jennifer Egert, Patients, and Family Members](https://www.fshdsociety.org/library/family-communication-with-dr-jennifer-egert-patients-and-family-members/)
- [Accessible Driver’s License and Modified Vehicles](https://www.fshdsociety.org/library/accessible-drivers-license-and-modified-vehicles/)
- [Dr. Jeffrey Statland on research gaps in pediatric FSHD](https://www.fshdsociety.org/library/early-onset-fshd-parents-roundtable-with-dr-jeffrey-statland/)
- [Sharon Terry on genetic testing of children with FSHD](https://www.fshdsociety.org/library/early-onset-fshd-parents-roundtable-with-sharon-terry/)
- [Speech and swallowing issues in children with FSHD](https://www.fshdsociety.org/library/speech-and-swallowing-issues-in-children-with-fshd/)
- [Pediatric FSHD natural history studies](https://www.fshdsociety.org/library/pediatric-fshd-natural-history-studies/)
- [Gene therapy for FSHD and what families can do to help](https://www.fshdsociety.org/library/gene-therapy-for-fshd-and-what-families-can-do-to-help/)
- [Mental health challenges for children and teens with FSHD](https://www.fshdsociety.org/library/mental-health-challenges-for-children-and-teens-with-fshd/)
- [ACT to improve quality of life](https://www.fshdsociety.org/library/act-to-improve-quality-of-life/)
- [Nerve mobility and pain, with Arielle Levy](https://www.fshdsociety.org/library/nerve-mobility-and-pain-with-arielle-levy/)
- [Staying Active While at Home](https://www.fshdsociety.org/library/staying-active-while-at-home/)
- [Medic Alert Card (2024 version)](https://www.fshdsociety.org/library/medic-alert-card-2024-version/)
- [Emergency considerations for FSHD patients](https://www.fshdsociety.org/library/emergency-considerations-for-fshd-patients/)
- [Braces for shoulder stabilization](https://www.fshdsociety.org/library/braces-for-shoulder-stabilization/)
- [Ten things I wish someone had told me…](https://www.fshdsociety.org/library/40849/) - Posted on: Jul 08, 2024 …when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every couple of months another decline will happen. Once you stop trying to predict progression and just focus on living your
- [The very model of a modern epigenetic disease](https://www.fshdsociety.org/library/the-very-model-of-a-modern-epigenetic-disease/)
- [Muscle loss with Ozempic® and similar drugs](https://www.fshdsociety.org/library/muscle-loss-with-ozempic-and-similar-drugs/)
- [It's alive! It's alive!](https://www.fshdsociety.org/library/its-alive-its-alive/)
- [Aging in place – Tips for planning ahead](https://www.fshdsociety.org/library/aging-in-place-tips-for-planning-ahead/)
- [The Advocate, 2024 Issue 3](https://www.fshdsociety.org/library/the-advocate-2024-issue-3/)
- [Working out with a personal trainer](https://www.fshdsociety.org/library/working-out-with-a-personal-trainer/)
- [Changemaker: Archer Sverdrup](https://www.fshdsociety.org/library/changemaker-archer-sverdrup/)
- [Products and devices for dental care](https://www.fshdsociety.org/library/products-and-devices-for-dental-care/)
- [Getting treatments to young patients](https://www.fshdsociety.org/library/getting-treatments-to-young-patients/)
- [Adjusting to a new environment](https://www.fshdsociety.org/library/adjusting-to-a-new-environment/)
- [FSHD and Pregnancy](https://www.fshdsociety.org/library/fshd-and-pregnancy/)
- [Insurance coverage for costly rare-disease treatments](https://www.fshdsociety.org/library/insurance-coverage-for-costly-rare-disease-treatments/)
- [Access to healthcare for people with disabilities](https://www.fshdsociety.org/library/access-to-healthcare-for-people-with-disabilities/)
- [High-intensity exercise training in FSHD](https://www.fshdsociety.org/library/high-intensity-exercise-training-in-fshd/)
- [Why I exercise](https://www.fshdsociety.org/library/why-i-exercise/)
- [Getting treatments to young patients](https://www.fshdsociety.org/library/getting-treatments-to-young-patients-2/)
- [Introduction to physical medicine and rehabilitation](https://www.fshdsociety.org/library/introduction-to-physical-medicine-and-rehabilitation/)
- [The American with Disabilities Act](https://www.fshdsociety.org/library/the-american-with-disabilities-act/)
- [Fighting for life insurance](https://www.fshdsociety.org/library/fighting-for-life-insurance/)
- [Big pharmas show growing interest in FSHD](https://www.fshdsociety.org/library/big-pharmas-show-growing-interest-in-fshd/)
- [Finding the care team you need](https://www.fshdsociety.org/library/finding-the-care-team-you-need/)
- [Dutch FSHD care guideline (English translation)](https://www.fshdsociety.org/library/dutch-fshd-care-guideline-english-translation/)
- [El estrés](https://www.fshdsociety.org/library/el-estres/)
- [Pediatric neuromuscular care](https://www.fshdsociety.org/library/pediatric-neuromuscular-care/)
- [2024 IRC Abstracts Book](https://www.fshdsociety.org/library/2024-irc-abstracts-book/)
- [European Neuromuscular Centre Conference on Pediatric FSHD](https://www.fshdsociety.org/library/european-neuromuscular-centre-conference-on-pediatric-fshd/)
- [Nutrición](https://www.fshdsociety.org/library/nutricion/)
- [The Fate of the Fulcrum Data](https://www.fshdsociety.org/library/the-fate-of-the-fulcrum-data/)
- [¿Qué tratamientos hay?](https://www.fshdsociety.org/library/que-tratamientos-hay/)
- [MUSCLE FATIGUE IN MUSCULAR DYSTROPHIES](https://www.fshdsociety.org/library/muscle-fatigue-in-muscular-dystrophies/)
- [FSHD Society Strengthens Leadership with Experts in Healthcare, Biotech, and Market Access](https://www.fshdsociety.org/library/fshd-society-strengthens-leadership-with-experts-in-healthcare-biotech-and-market-access/)
- [Anesthesia in surgery for people with FSHD](https://www.fshdsociety.org/library/anesthesia-in-surgery-for-people-with-fshd/)
- [Rebounding Exercises](https://www.fshdsociety.org/library/rebounding-exercises/)
- [Springbok Analytics Leads MRI Innovations in Multi-Site Pediatric FSHD Clinical Study](https://www.fshdsociety.org/library/springbok-analytics-leads-mri-innovations-in-multi-site-pediatric-fshd-clinical-study/)
- [The Care Connector: Find Resources Near You](https://www.fshdsociety.org/library/the-care-connector-find-resources-near-you/)
- [Using HIPAA to Make Sure You Are Treatment Ready](https://www.fshdsociety.org/library/using-hipaa-to-make-sure-you-are-treatment-ready/)
- [Epicrispr Biotechnologies achieves milestones in developing groundbreaking therapy for FSHD](https://www.fshdsociety.org/library/epicrispr-biotechnologies-achieves-milestones-in-developing-groundbreaking-therapy-for-fshd/)
- [Hope in the Lab: Taking back control of my destiny through research](https://www.fshdsociety.org/library/hope-in-the-lab-taking-back-control-of-my-destiny-through-research/)
- [Epicrispr Biotechnologies Partners with Springbok Analytics to Integrate AI Muscle Analysis in First-in-Human FSHD Study](https://www.fshdsociety.org/library/epicrispr-biotechnologies-partners-with-springbok-analytics-to-integrate-ai-muscle-analysis-in-first-in-human-fshd-study/)
- [Suitcase Tetris, or how to travel with a disability](https://www.fshdsociety.org/library/suitcase-tetris-or-how-to-travel-with-a-disability/)
- [2025 Advocate, Issue 1, Spring](https://www.fshdsociety.org/library/2025-advocate-issue-1-spring/)
- [Understanding the FDA’s Orphan Drug Development Program: Why It Matters for FSHD and All Rare Disease Communities](https://www.fshdsociety.org/library/understanding-the-fdas-orphan-drug-development-program-why-it-matters-for-fshd-and-all-rare-disease-communities/)
- [How Fulcrum Therapeutics’ Phase 3 REACH Clinical Trial Will Continue to Power the Path Forward](https://www.fshdsociety.org/library/how-fulcrum-therapeutics-phase-3-reach-clinical-trial-will-continue-to-power-the-path-forward/)
- [Answering your questions about BetterLife FSHD](https://www.fshdsociety.org/library/answering-your-questions-about-betterlife-fshd/)
- [Pediatric FSHD - Euro-NMD Webinar Series, Episode 3](https://www.fshdsociety.org/library/pediatric-fshd-euro-nmd/)
- [Driving Breakthroughs for FSHD Treatments](https://www.fshdsociety.org/library/driving-breakthroughs-for-fshd-treatments/)
- [Inside the 2025 International Research Congress on FSHD: Breakthroughs, Hope, and the Road Ahead](https://www.fshdsociety.org/library/inside-the-2025-international-research-congress-on-fshd-breakthroughs-hope-and-the-road-ahead/)
- [Breathing with FSHD, a talk by Dr. Joshua Benditt](https://www.fshdsociety.org/library/breathing-with-fshd-a-talk-by-dr-joshua-benditt/)
- [Epicrispr Biotechnologies Doses First Patient in First-in-Human Clinical Trial of EPI-321 for Facioscapulohumeral Muscular Dystrophy](https://www.fshdsociety.org/library/epicrispr-biotechnologies-doses-first-patient-in-first-in-human-clinical-trial-of-epi-321-for-facioscapulohumeral-muscular-dystrophy/)
- [More Laughter, More Love: Reflections on an inter-abled relationship](https://www.fshdsociety.org/library/more-laughter-more-love-reflections-on-an-inter-abled-relationship/)
- [Living with FSHD can feel hopeless, but there are real ways to make a difference](https://www.fshdsociety.org/library/living-with-fshd-can-feel-hopeless-but-there-are-real-ways-to-make-a-difference/)
- [Understanding the Physiatrist's Role in FSHD Care](https://www.fshdsociety.org/library/understanding-the-physiatrists-role-in-fshd-care/)
- [Physical Therapy for Shoulder Issues in Kids with Maaike Pelsma](https://www.fshdsociety.org/library/40100/)
- [The History of FSH muscular dystrophy in a large Utah kindred](https://www.fshdsociety.org/library/the-history-of-fsh-muscular-dystrophy-in-a-large-utah-kindred/)
- [The FSHD Navigator](https://www.fshdsociety.org/library/the-fshd-navigator-2/)
- [FSHD Advocate 2024, Issue 3](https://www.fshdsociety.org/library/fshd-advocate-2024-issue-3/)

## Local Chapters

- [Bay Area Chapter](https://www.fshdsociety.org/local-chapter/bay-area-chapter/) - The Bay Area chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [NE Florida Chapter](https://www.fshdsociety.org/local-chapter/ne-florida-chapter/) - The Northeast Florida chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Iowa Chapter](https://www.fshdsociety.org/local-chapter/iowa-chapter/) - The Iowa Chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Chapitre du Québec/Quebec Chapter](https://www.fshdsociety.org/local-chapter/quebec-chapter/) - FSHD Canada Foundation has partnered with the FSHD Society to support and grow the FSHD Communities across Canada with the shared goal to deliver treatments and a cure for FSH Muscular Dystrophy. The Quebec Chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with
- [Ontario Chapter](https://www.fshdsociety.org/local-chapter/ontario-chapter/) - FSHD Canada Foundation has partnered with the FSHD Society to support and grow the FSHD Communities across Canada with the shared goal to deliver treatments and a cure for FSH Muscular Dystrophy. The Ontario chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with
- [British Columbia Chapter](https://www.fshdsociety.org/local-chapter/british-columbia-chapter/) - The British Columbia chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Alberta Chapter](https://www.fshdsociety.org/local-chapter/alberta-chapter/) - FSHD Canada Foundation has partnered with the FSHD Society to support and grow the FSHD Communities across Canada with the shared goal to deliver treatments and a cure for FSH Muscular Dystrophy. The Alberta chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with
- [Idaho Chapter](https://www.fshdsociety.org/local-chapter/idaho-chapter/) - The Idaho chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Pacific Northwest Chapter](https://www.fshdsociety.org/local-chapter/pacific-northwest-chapter/) - The Pacific Northwest chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Chicagoland Chapter](https://www.fshdsociety.org/local-chapter/chicagoland-chapter/) - The Chicagoland chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Arizona Chapter](https://www.fshdsociety.org/local-chapter/arizona-chapter/) - The Arizona chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Utah Chapter](https://www.fshdsociety.org/local-chapter/utah-chapter/) - The Utah chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [North Texas Chapter](https://www.fshdsociety.org/local-chapter/north-texas-chapter/) - The North Texas chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Central Texas Chapter](https://www.fshdsociety.org/local-chapter/central-texas-chapter/) - The Central Texas chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Columbus Chapter](https://www.fshdsociety.org/local-chapter/columbus-chapter/) - The Columbus chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Sacramento Chapter](https://www.fshdsociety.org/local-chapter/sacramento-chapter/) - The Sacramento chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [South Carolina Chapter](https://www.fshdsociety.org/local-chapter/south-carolina-chapter/) - The South Carolina chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Western PA Chapter](https://www.fshdsociety.org/local-chapter/western-pa-chapter/) - The Western Pennsylvania chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [New England Chapter](https://www.fshdsociety.org/local-chapter/new-england-chapter/) - The New England chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Nevada Chapter](https://www.fshdsociety.org/local-chapter/nevada-chapter/) - The Nevada chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [New York City Chapter](https://www.fshdsociety.org/local-chapter/new-york-city-chapter/) - The New York City chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support,
- [Atlanta Chapter](https://www.fshdsociety.org/local-chapter/atlanta-chapter/) - The Atlanta chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Southwest Florida Chapter](https://www.fshdsociety.org/local-chapter/southwest-florida-chapter/) - The Southwest Florida chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Tampa Chapter](https://www.fshdsociety.org/local-chapter/tampa-chapter/) - The Tampa chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [St. Louis Chapter](https://www.fshdsociety.org/local-chapter/st-louis-chapter/) - The St. Louis chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Greater Philadelphia Chapter](https://www.fshdsociety.org/local-chapter/greater-philadelphia-chapter/) - The Greater Philadelphia chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Michigan Chapter](https://www.fshdsociety.org/local-chapter/michigan-chapter/) - The Michigan chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Wisconsin Chapter](https://www.fshdsociety.org/local-chapter/wisconsin-chapter/) - The Wisconsin chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [San Diego Chapter](https://www.fshdsociety.org/local-chapter/san-diego-chapter/) - The San Diego chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Mid-Atlantic Chapter](https://www.fshdsociety.org/local-chapter/mid-atlantic-chapter/) - The Mid-Atlantic chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [North Carolina Chapter](https://www.fshdsociety.org/local-chapter/north-carolina-chapter/) - The North Carolina chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Los Angeles Chapter](https://www.fshdsociety.org/local-chapter/los-angeles-chapter/) - The Los Angeles chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [East Tennessee Chapter](https://www.fshdsociety.org/local-chapter/east-tennessee-chapter/) - The East Tennessee chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Colorado/New Mexico Chapter](https://www.fshdsociety.org/local-chapter/colorado-new-mexico-chapter/) - The Colorado/New Mexico chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Kansas City Chapter](https://www.fshdsociety.org/local-chapter/kansas-city-chapter/) - The Kansas City Chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share
- [Dakotas Chapter](https://www.fshdsociety.org/local-chapter/dakotas-chapter/) - The Dakotas chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Virginia Chapter](https://www.fshdsociety.org/local-chapter/virginia-chapter/) - The Virginia chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local
- [Minnesota Chapter](https://www.fshdsociety.org/local-chapter/minnesota-chapter/) - The Minnesota chapter of the FSHD Society is a local group of people, families, and advocates working together to support those living with facioscapulohumeral muscular dystrophy (FSHD). Whether you join us in person or virtually, our chapter offers a place to connect with others who understand what you’re going through. We provide support, share local

## Team Members

- [George Pollock Jr.](https://www.fshdsociety.org/our-team/george-pollock-jr/)
- [William McKee](https://www.fshdsociety.org/our-team/william-mckee/)
- [Amy Bekier](https://www.fshdsociety.org/our-team/amy-bekier/)
- [Stuart Lai](https://www.fshdsociety.org/our-team/stuart-lai/)
- [Michelle Mellion, MD](https://www.fshdsociety.org/our-team/michelle-mellion-md/)
- [Mark Stone](https://www.fshdsociety.org/our-team/mark-stone/)
- [Lucienne Ronco, PhD](https://www.fshdsociety.org/our-team/lucienne-ronco-phd/)
- [Daniel Paul Perez, Emeritus](https://www.fshdsociety.org/our-team/daniel-paul-perez-emeritus/)
- [William R. Lewis, Sr., MD Emeritus](https://www.fshdsociety.org/our-team/william-r-lewis-sr-md-emeritus/)
- [Neil A. Solomon](https://www.fshdsociety.org/our-team/neil-a-solomon/)
- [Jason Shi](https://www.fshdsociety.org/our-team/jason-shi/)
- [Bruce Ryskamp](https://www.fshdsociety.org/our-team/bruce-ryskamp/)
- [Chris Mancill](https://www.fshdsociety.org/our-team/chris-mancill/)
- [William R. Lewis III](https://www.fshdsociety.org/our-team/william-r-lewis-iii/)
- [Robert E. Humphreys, Jr.](https://www.fshdsociety.org/our-team/robert-e-humphreys-jr/)
- [Mel Hayes](https://www.fshdsociety.org/our-team/mel-hayes/)
- [Lee (Frank) Kolakowski](https://www.fshdsociety.org/our-team/lee-frank-kolakowski/)
- [Jack Gerblick](https://www.fshdsociety.org/our-team/jack-gerblick/)
- [William Sarraille](https://www.fshdsociety.org/our-team/william-sarraille/)

## Events

- [Dakotas Chapter Meeting - In-Person](https://www.fshdsociety.org/event/7-19-dakotas/) - 3:00pm CT Bryan's office building: 3788 55th Ave S, Fargo, ND 58104 Happy Summer! Let's get together to catchup, and we will be discussing the Walk & Roll event.
- [34th Annual International Research Congress](https://www.fshdsociety.org/event/34th-annual-international-research-congress/) - Join us in Madrid, Spain for the 2027 International Research Congress on FSHD. More details to come, stay tuned!
- [Los Angeles Hybrid Meeting](https://www.fshdsociety.org/event/7-26-la-hybrid/) - 12:00-2:00pm PT - Hybrid Twohey's - 424 Fair Oaks Ave, South Pasadena, CA, 91030 OR Virtual via Zoom Please join us in-person or via zoom for another great time in sharing stories, support, and we are looking for volunteers to help us find sponsors and organize our Walk'N'Roll! Hope to see you there!
- [Michigan Chapter Meeting](https://www.fshdsociety.org/event/9-9-26-michigan/) - Sept 9, 2026 7:00 PM ET This will be a great opportunity to connect with others, hear about what's happening across Michigan, share updates, and discuss ways we can continue to support individuals and families affected by FSHD. We'll also be focusing on the Michigan Walk & Roll, taking place on September 20th. Whether you're
- [Michigan Chapter In-Person Gathering](https://www.fshdsociety.org/event/11-15-26-michigan/) - 2:00-4:30pm ET, Location TBD Before the busy holiday season arrives, we'd love to spend some time together connecting, learning, and engaging with fellow members of the Michigan FSHD community. We're planning an in-person Michigan Chapter meeting at a centrally located venue (to be announced soon) and hope you'll join us for refreshments, light appetizers, and
- [July 2026 Feeling Fit](https://www.fshdsociety.org/event/july-2026-feeling-fit/) - July 9, 2026 7:00 PM ET Join us this month for a Chair Yoga session led by Donna Russo. This is a gentle chair yoga practice with meditation and breath, emphasizing how to adapt to your movement. As a reminder: Participants must register for this meeting in order to receive the Zoom link. After registration,
- [July 2026 Weekend Wellness Hour Meeting](https://www.fshdsociety.org/event/07-26-wellness-weekend/) - July 25, 2026 1:00 PM ET Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from newly diagnosed to long-experienced community
- [July 2026 Living Spiritually with FSHD](https://www.fshdsociety.org/event/7-7-26-living-spiritually/) - July 7th, 2026 - 7pm ET Dealing with Hard Times: Sharing and Holding on to Faith Living with FSHD often brings physical challenges, emotional fatigue, uncertainty about the future, and moments of grief. Scripture shows us that God does not expect us to pretend we are fine. He invites us to bring our whole selves—our
- [July 2026 Wellness Hour Meeting: Click to Register](https://www.fshdsociety.org/event/july-2026-wellness-hour-meeting-click-to-register/) - July 13th, 2026 4:30pm ET Support Systems This session will explore the various Support Systems that might be available to you. Come to the Wellness Hour to hear how you can be more supported in your FSHD Journey. You may find new ideas for possible support that you might not have thought about before! Led
- [July 2026 Women on Wellness Meeting: Click to Register](https://www.fshdsociety.org/event/7-1-26-women-on-wellness/) - July 1, 2026 5:00pm ET/ 4:00 CT / 3:00 MT / 2:00 PT This month, we will discuss "Tips and Tricks for Resourceful Living". Bring a challenge that we can brainstorm together. We'll share ways we can make our lives easier as we navigate life with FSHD. Example topics include: Bedding Bathing Toileting Cooking Eating
- [Western PA Chapter Meeting](https://www.fshdsociety.org/event/western-pa-chapter-meeting-3/) - July 9th, 2026 at 7:00pm ET We will be discussing news from the FSHD Connect Conference, planning our Chapter Family Picnic, and enjoying sharing and spending time together.
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/7-28-va-chapter/) - Virtual via Zoom on July 28 6:00-7:00pm ET You’re invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. At this meeting,
- [FSHD University: Navigating Women's Health with FSHD](https://www.fshdsociety.org/event/fshdu-womens-health/) - Thursday, June 18th at 1:00 pm ET Presenter: Loralei L. Thornburg, MD, University of Rochester Medical Center This session explores key women’s health topics in FSHD, including family planning and reproductive considerations, while highlighting guidance from the updated FSHD clinical care guidelines. Participants will gain insight into how care recommendations can support health, planning, and
- [FSHD University: Project Mercury Update: Three Years of Global Collaboration and What's Next](https://www.fshdsociety.org/event/project-mercury-update-three-years-of-global-collaboration-and-whats-next-fshd-university/) - Wednesday, July 29th at 5:00 pm ET Presenter: Emma Weatherley, Project Mercury Chair Join Project Mercury Chair Emma Weatherly as we reflect on three remarkable years of global collaboration and look ahead to an even more critical phase. Project Mercury began with a simple but urgent realization: promising FSHD therapies were advancing faster than the world's
- [FSHD University: Working with FSHD: Navigating Vocational Rehabilitation Services](https://www.fshdsociety.org/event/working-with-fshd-navigating-vocational-rehabilitation-services-fshd-university/) - Thursday, July 16th at 1:00 pm ET Presenter: Marisa Spain, Disability Rights Michigan Obtaining, maintaining, and advancing in employment can be a complex conversation when also living with FSHD. You might need expensive equipment like a wheelchair or accessible vehicle to be able to maintain access to work, or additional training or schooling to transition
- [St. Louis World FSHD Day Celebration](https://www.fshdsociety.org/event/stl-world-6-20/) - June 20, 2026 at 7:30pm Modern Brewery (5200 Oakland Ave, St. Louis, MO 63110) + STL Science Center Planetarium (5100 Clayton Ave, St. Louis, MO 63110) DETAILS: We will first meet at Modern Brewery for dinner/drinks, and to celebrate together. After that we will head to the nearby planetarium, which will be lit up orange in
- [Multi-Chapter Meeting: Eastern & Central Zones](https://www.fshdsociety.org/event/7-29-multi/) - Multi-Chapter Meeting: Eastern & Central Zones July 29, 2026 06:00 PM ET / 5:00 PM CT Join us to learn about updates from the 2026 International Research Conference! After the presentation, there will be time to join your chapter in a breakout room.
- [Multi-Chapter Meeting: Mountain & Pacific Time Zones](https://www.fshdsociety.org/event/7-30-multi/) - Multi-Chapter Meeting: Mountain & Pacific Time Zones July 30, 2026 6:00 PM MT / 5:00 PM PT Join us to learn about updates from the 2026 International Research Conference! After the presentation, there will be time to join your chapter in a breakout room.
- [North Carolina Chapter World FSHD Day Baseball Game](https://www.fshdsociety.org/event/north-carolina-chapter-world-fshd-day-baseball-game/) - CANCELLED 6:00pm at L.P. Frans Stadium - 2500 Clement Blvd NW Hickory NC 28601 You are invited to join the North & South Carolina FSHD Chapters for an in-person gathering on World FSHD Day, June 20th, 2026, for a night of baseball as the Hickory Crawdads take on the Columbia Fireflies! The night will be
- [Colorado/New Mexico Chapter Gathering for World FSHD Day](https://www.fshdsociety.org/event/co-nm-wfd-26/) - June 20, 2026 from 11:00am-1:00pm Great Lawn Park Picnic Site 2. For GPS directions, please use the address 8859 E Lowry Blvd. Denver, CO 80230 Join us for a picnic to celebrate World FSHD Day on June 20th! June 20 is World FSHD Day and we will be gathering as a Chapter to celebrate. We
- [Michigan Chapter Meeting](https://www.fshdsociety.org/event/michigan-chapter-meeting-2/) - Jun 17, 2026 at 7:00PM ET We are excited to gather virtually for our upcoming Michigan Chapter meeting and hope you can join us! During this meeting, we'll discuss what's happening across Michigan, share chapter updates, and connect with one another. We'll also talk about the upcoming FSHD Society Connect Conference taking place in late
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/6-23-26-va-chapter/) - Jun 23, 2026 at 6pm ET You’re invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share
- [June Wellness Hour - Click to Register](https://www.fshdsociety.org/event/wellness-hour-6-26/) - June 8, 2026 4:30pm ET / 3:30 CT / 2:30 MT / 1:30 PT Designing a Home for Every Body Applying universal design to creating/remodeling a home that enables us, with FSHD, to live our best lives. This session will help us understand the difference between “accessible” and “universal” design and show us, with a
- [British Columbia Chapter World FSHD Day Event](https://www.fshdsociety.org/event/bc-6-20-26/) - June 20 from 7:30-10:30pm PT Mahony's Pub. Vancouver Convention Centre West Building, Burrard Landing, 1055 Canada Pl #36, Vancouver, BC V6C 0C3 Come out for some food and beverages to help celebrate World FSHD Day right next to the Sails, which will be lit up in ORANGE to commemorate World FSHD Day. Lots of other
- [Canada Multi-Chapter Meeting with SOLVE FSHD](https://www.fshdsociety.org/event/6-10-26-canada-multi/) - June 10th, 2026 | 5:00-6:30pm PT Hosted by the British Columbia Chapter THIS IS A MEETING YOU WON'T WANT TO MISS! Eva Chin of SOLVE FSHD will be offering an update along with some exciting news for BC Chapter members! Via Zoom, Eva will get us all up to speed on the progress that was
- [Living Spiritually with FSHD: Prayer that Changes.](https://www.fshdsociety.org/event/living-spiritually-6-2-26/) - Jun 2, 2026 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Join us for our next Living Spiritually with FSHD Gathering as we reflect on how prayer changes over our journey with FSHD. What does prayer look like for someone with a chronic disease? What does faithful prayer look like when we
- [Young Adults - Relationships & FSHD](https://www.fshdsociety.org/event/young-adults-2026-4/) - Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young
- [World FSHD Day Special - FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/world-fshd-day-special-fshd-straight-talk-with-tim-hollenback/) - It's our annual World FSHD Day special episode, sharing the stories of our community members. On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tim-hollenback/) - **Schedule adjusted for World FSHD Day** On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube
- [Feeling Fit with FSHD - Click to Register](https://www.fshdsociety.org/event/feeling-fit-6-11-26/) - June 11, 2026 7pm ET / 6pm CT / 5pm MT / 4pm PT Summer Safety and Travel Planning Ranae Beeker and Frank Hanley team up to present a summer safety workshop. This workshop will discuss water safety, walking and hiking, driving and travel, water (hydration) and eating, and more. There will be time to
- [Women on Wellness - Remembering Ora Prilleltensky](https://www.fshdsociety.org/event/wow-6-3-26/) - June 2026 Women on Wellness Meeting June 3, 2026 5:00 PM ET / 4:00 CT / 3:00 MT / 2:00 PT A Combined Wellness Hour and WOW community Gathering to: Share our memories, thoughts, grief, and of course, affection for Ora Prilleltensky. All are welcome
- [Atlanta World FSHD Day Watch Party](https://www.fshdsociety.org/event/atlanta-world-fshd-day-2026/) - 8:00pm ET at El Azteca Perimeter - 6115 Peachtree Dunwoody Road, Ste. 100, Sandy Springs GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in honor of World FSHD Day! We are planning to meet up at El Azteca Perimeter, located at 6115 Peachtree Dunwoody Road, Ste. 100,
- [Alberta Chapter In-Person Meeting for World FSHD Day](https://www.fshdsociety.org/event/alberta-6-18/) - June 18, 2026 | 6:00pm National Westhills (180 Stewart Green SW, Calgary) Chapter get-together to celebrate World FSHD Day (two days early). An opportunity to mix & mingle over dinner. Everyone is welcome!
- [Nevada Chapter Meeting](https://www.fshdsociety.org/event/6-2-nevada/) - June 2, 2026 | 7:00-8:00pm PT Hi Nevada Chapter - Let's have a virtual meeting to catch up and discuss the Walk & Roll!
- [Iowa Chapter Meeting](https://www.fshdsociety.org/event/6-17-iowa/) - June 17, 2026 | 7:00-8:00pm CT Agenda: Introductions - How’s Life Research updates-recap “Understanding Gene Therapy and AAV technology for FSHD”. Video can be found on Iowa Chapter Facebook page April 29th, 2026 post. FSHD News World FSHD Day FSHD Connect Conference FSHD Iowa Chapter
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-6/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [NYC Area Chapter Virtual Meeting](https://www.fshdsociety.org/event/nyc-area-chapter-virtual-meeting/) - May 19, 2026 6:30 PM in Eastern Time (US and Canada) Description Join the New York City Chapter for FSHD Society updates and collaboration.
- [Los Angeles Chapter In-Person Gathering](https://www.fshdsociety.org/event/los-angeles-chapter-in-person-gathering/) - Sunday, May 24 12:00-2:00pm PT at Santa Monica Brew Works - 1920 Colorado Ave. Santa Monica, CA 90404 We'll gather to brainstorm some ideas for better connection, volunteer recruitment, and fundraising.
- [PNW Chapter Baseball Game & World FSHD Day Celebration](https://www.fshdsociety.org/event/pnw-chapter-baseball-game-world-fshd-day-celebration/) - Sunday, June 14th, 2026 Join the Pacific Northwest Chapter on June 14th to watch the Tacoma Rainiers play against the Albuquerque Isotopes! Cheney Stadium, Tacoma - 2502 S Tyler St, Tacoma, WA 98405 12:00pm if you'd like to join us for a pre-game photo on the field. The game starts at 1:35pm and ends around
- [Women on Wellness - Strength & Adaptation for Every Season of Life - Register Here](https://www.fshdsociety.org/event/women-on-wellness-strength-adaptation-for-every-season-of-life/) - Women on Wellness - May Meeting May 6, 2026 at 4:30 PM ET/ 3:30 CT/ 2:30 MT/ 1:30 PT This session focuses on our strengths and how we use adaptation to maneuver through the seasons and storms of our lives. Focusing on how we use the gifts of our hands, heart, and head. Please remember
- [Wellness Hour Session - Transition Points and Other Special Moments in the FSHD Process - Register Here](https://www.fshdsociety.org/event/5-26-wellness/) - May 2026 Wellness Hour Session Monday, May 11th at 5:00 p.m. EST Transition Points and Other Special Moments in the FSHD Process While people with FSHD are constantly adapting and adjusting, there are transition points that require major changes. Is it time to begin using a walker? How do I feel about using a wheelchair
- [Feeling Fit with FSHD - Chair Yoga - Register Here](https://www.fshdsociety.org/event/feeling-fit-5-14-26/) - May 2026 Feeling Fit with FSHD May 14, 2026 7:00pm ET / 6:00pm CT / 5:00pm MT / 4:00pm PT Join us this month for a Chair Yoga session led by Donna Russo. As a reminder: Participants must register for this meeting in order to receive the Zoom link. After registration, you'll get a confirmation
- [Living Spiritually with FSHD - Register Here](https://www.fshdsociety.org/event/living-spiritually-may/) - May 5, 2026 7:00 PM ET/6:00 PM CT/5:00 PM MT/4:00 PM PT Join us for a meaningful conversation centered on the prayer “Empty me. Fill me. Use me.” as we encourage one another and explore how God is working in and through us, even in the midst of FSHD. Living Spiritually with FSHD is a
- [New England Chapter Meeting](https://www.fshdsociety.org/event/ne-6-2-26/) - Join us for the latest news from the FSHD Society and to discuss World FSHD Day (June 20), upcoming events and activities, and the Walk and Roll.
- [Women on Wellness - Transitions in mobility](https://www.fshdsociety.org/event/women-on-wellness/2021-10-06/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t
- [Greater Philly Area In-Person Chapter Meeting - World FSHD Day](https://www.fshdsociety.org/event/greater-philly-area-in-person-chapter-meeting-world-fshd-day/)
- [San Diego Chapter In-Person Gathering](https://www.fshdsociety.org/event/san-diego-5-30/) - San Diego Chapter In-Person Gathering 11:30am - 2:00pm PT The PRADO at Balboa Park 1549 El Prado Suite 12, San Diego, CA 92101 We will discuss FSHD Clinical Trials, life hacks, Walk/Roll (9.30.26) and more. Come early, stay late to enjoy the museums, promenade, Spreckels Organ Music, Spanish Village Artists and Balboa Park festivities. Reservations
- [Weekend Wellness Hour - May 2026](https://www.fshdsociety.org/event/wellness-5-30/) - Weekend Wellness Hour May 30, 2026 1:00pm ET/12:00pm CT/11:00am MT/10:00am PT Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from
- [Ontario In-Person Chapter Meeting](https://www.fshdsociety.org/event/ontario-5-3-26/) - Hi Ontario Members, Spring is here, and I’d love for us to get together for a casual gathering. This time we will meet in York region. Everyone is welcome, family and friends included. Bring something to sit on and even a picnic if you’d like. We’ll chat, talk about the latest research, and share tips
- [Chicago Chapter Meeting - In Person](https://www.fshdsociety.org/event/5-16-chicago/) - We’d love to see you (in person)! We will have light refreshments and good conversations!
- [Wellness Hour - Weekend - Global Community](https://www.fshdsociety.org/event/wellness-hour-4-25-26/) - Cancelled, will return in May Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from newly diagnosed to long-experienced community members,
- [Feeling Fit with FSHD: Energy Sovereignty: A Qigong Practice for Women](https://www.fshdsociety.org/event/feeling-fit-4-25-26/) - 7:30pm ET/6:30 CT/5:30 MT/4:30 PT Join Energy Alchemist Rose Wippich for a nurturing 60-minute practice designed specifically for women navigating muscular dystrophy. This gentle session weaves together qigong and adaptive yoga, guiding you from grounding and gentle mobilization, through empowering practices to restorative integration with Reiki healing. You'll explore what it means to be the
- [Wellness Hour: Metaphors of Living with FSHD](https://www.fshdsociety.org/event/wellness-hour-metaphors-of-living-with-fshd/) - Metaphors of Living with FSHD: Like fish who are unaware that they live in water, we don’t recognize how much we think in terms of metaphors: “I’m in over my head”; “Business is War”; “Life is Art”; “Illness is an arduous journey”. Metaphors make a comparison between two seemingly unrelated things in a way that
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-rountable-3/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Our April Roundtable guest will be Emma Weatherley, the purpose-driven Managing Director of FSHD Global. Diagnosed
- [Young Adults](https://www.fshdsociety.org/event/young-adults-2026-3/) - Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young
- [FSHD University: Ask the Scientist – A Community Town Hall with Dr. Lucienne Ronco](https://www.fshdsociety.org/event/fshdu-scientist_townhall/) - Join us for a special FSHD University town hall where the community can connect directly with Dr. Lucienne Ronco, Chief Science Officer of the FSHD Society, for an open conversation about the science of FSHD. This interactive session is your opportunity to ask questions about the biology of FSHD, the latest research developments, emerging therapeutic
- [New England Chapter In-Person Meeting](https://www.fshdsociety.org/event/new-england-4-25-26/) - Come join us for an informal gathering to meet up with other FSHD New Englanders. This is a great opportunity to connect with our local community while enjoying a casual lunch. The restaurant is handicap accessible and an easy on-off from the highway. Reservations are required no later than April 22. Hope to see you
- [Women on Wellness April Meeting](https://www.fshdsociety.org/event/women-on-wellness-april-meeting/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT At this month's meeting we will discuss how to feel more proficient with Zoom to promote ease of interaction during our Zoom meetings. Please note that per the request of the attendees in this group, only women with FSHD are
- [St. Louis Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/st-louis-walk-roll-to-cure-fshd-2026/) - 2026 St. Louis Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Multi-Chapter Meeting: Mountain & Pacific Time Zones](https://www.fshdsociety.org/event/4-15-multichapter-meeting/) - We’re excited to invite you to our first Multi-Chapter Meeting of 2026 - a virtual event that brings together several FSHD chapters (based on time zone) for updates and peer connection. These meetings are designed to strengthen our chapter network and keep our community informed and connected. April's topic: "Understanding Gene Therapy and AAV technology
- [Multi-Chapter Meeting: Eastern & Central Zones](https://www.fshdsociety.org/event/4-14-multichapter-meeting/) - We’re excited to invite you to our first Multi-Chapter Meeting of 2026 - a virtual event that brings together several FSHD chapters (based on time zone) for updates and peer connection. These meetings are designed to strengthen our chapter network and keep our community informed and connected. April's topic: "Understanding Gene Therapy and AAV technology
- [Pacific North West Sips & Smores for Smiles 2026](https://www.fshdsociety.org/event/sips-smores-smiles-2026/) - Pacific Northwest Sips & Smores for Smiles Register for the Pacific Northwest Sips & Smores and support our annual FSHD fundraising campaign. Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join your online fundraising efforts. Then we will celebrate the Pacific Northwest together with sips and s’mores!
- [FSHD 360 Québec](https://www.fshdsociety.org/event/fshd-360-quebec/) - Saturday, May 30, 2026 Horaire de la conférence : 10h00 à 15h30 | Program runs from 10:00 am - 3:30 pm Lieu | Location: Hôtel Alt Quartier DIX30 | Alt Hotel Quartier DIX30 6500 Boul. de Rome, Brossard, QC, Canada, J4Y 0B6 2026 FSHD 360 Quebec Registrations 2026 FSHD 360 Quebec Info Page À propos
- [New England Chapter Meeting](https://www.fshdsociety.org/event/new-england-chapter-meeting-3/) - A time to connect, and share some updates: New advocacy updates An upcoming casual luncheon for our group near Framingham, MA on April 25th Share a short inspirational video from Spain for FSHD Awareness The upcoming multi-chapter meeting on April 14, featuring Dr. Michelle Mellion speaking about "Understanding gene therapy and AAV technology" New nutritional
- [Living Spiritually with FSHD: God Is In Control: Finding Peace in His Omnipotence](https://www.fshdsociety.org/event/living-spiritually-finding-peace/) - Living with FSHD can make life feel unpredictable and, at times, beyond our control. Together, we’ll be reminded that nothing about our diagnosis surprises God. His sovereignty is not diminished by our weakness. In Him, we can find steady ground even when our bodies feel uncertain. Come ready to reflect, share, and be strengthened by
- [Drum & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/drum-roll-to-cure-fshd-2026/) - 2026 Drum & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media and
- [Los Angeles Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/los-angeles-walk-2026/) - 2026 Los Angeles Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Virginia Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/virginia-walk-2026/) - 2026 Virginia Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Atlanta Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/atlanta-walk-roll-to-cure-fshd-2026/) - 2026 Atlanta Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Columbus Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/columbus-walk2026/) - 2026 Columbus Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Florida (Northeast) Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/neflorida-walk-2026/) - 2026 NE Florida Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [North Carolina Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/north-carolina-walk-2026/) - 2026 North Carolina Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Sacramento Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/sacramento-walk-2026/) - 2026 Sacramento Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [New England Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/new-england-walk-2026/) - 2026 New England Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Long Island Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/long-island-walk-2026/) - 2026 Long Island Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Bay Area Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/bay-area-walk-2026/) - 2026 Bay Area Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [San Diego Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/san-diego-walk-2026/) - 2026 San Diego Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Mid-Atlantic Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/mid-atlantic-walk-2026/) - 2026 Mid-Atlantic Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [2026 International Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2026-international-walk-roll-to-cure-fshd/) - 2026 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Ontario Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/ontario-walk-2026/) - 2026 Ontario Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Intermountain Walk & Roll to Cure FSHD 2026 (Salt Lake City, UT)](https://www.fshdsociety.org/event/utah-walk-2026/) - 2026 Intermoutain (Utah) Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Colorado Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/colorado-walk-roll-to-cure-fshd-2026/) - 2026 Colorado Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Chicagoland Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/chicagoland-walk-2026/) - 2026 Chicagoland Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Alberta Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/alberta-walk-2026/) - 2026 Alberta Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [New Jersey Shore Walk & Roll to Cure FSHD 2026](https://www.fshdsociety.org/event/new-jersey-walk-2026/) - 2026 New Jersey Shore Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on
- [Dakotas Chapter Meeting](https://www.fshdsociety.org/event/dakotas-chapter-meeting/) - Join the Dakotas Chapter at our next in-person meeting to catch up with one another and provide support as we navigate life with FSHD. Address:
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-9/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-10/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-8/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-7/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-5/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-4/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Webinar for Researchers: PRMRP Grant Program](https://www.fshdsociety.org/event/webinar-for-researchers-prmrp-grant-program/) - Researchers interested in FSHD funding are invited to attend an upcoming webinar about the Peer Reviewed Medical Research Program (PRMRP) grant application process. FSHD is an eligible condition under the program for the first time in FY26. There are some key differences between this program and the NIH – we will share what we have
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-3/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Pacific Northwest Chapter Meeting: March Meet Up](https://www.fshdsociety.org/event/pacific-northwest-chapter-meeting-march-meet-up/) - Join the PNW Chapter for our March Meetup on March 14th at 3pm PT! Topics include: Attending the FSHD Connect Conference - what to expect A new nutrition recommendation for FSHD Local upcoming meetings and events Answering your questions
- [Wellness Hour: Open Forum and Global Connectio](https://www.fshdsociety.org/event/wellness-hour-open-forum-and-global-connectio/) - Join us for our next Weekend Wellness Hour, an open forum gathering designed for members of the international FSHD community who are available on the last Saturday of most months. This welcoming space brings together individuals at every stage of the FSHD journey, from newly diagnosed to long-experienced community members, for meaningful conversation, shared questions,
- [Feeling Fit: Neck, Shoulder Strength and Mobility](https://www.fshdsociety.org/event/feeling-fit-neck-shoulder-strength-and-mobility/) - Join us for our first March session of Feeling Fit with FSHD as we focus on gentle and effective neck and shoulder exercises. These areas are often impacted by FSHD, affecting posture, comfort, and daily activities. This session will guide you through safe movements designed to improve mobility, reduce tension, and support better alignment—helping you
- [Feeling Fit: Focus on Breathing](https://www.fshdsociety.org/event/feeling-fit-breathing/) - Breathing is foundational to strength, relaxation, and overall wellness. In this Feeling Fit with FSHD session, we’ll concentrate on breathing techniques that support posture, endurance, and stress reduction. Participants will learn practical strategies to enhance breath control and incorporate mindful breathing into everyday routines for improved physical and emotional well-being.
- [Living Spiritually with FSHD: Words That Sustain Us](https://www.fshdsociety.org/event/living-spiritually-with-fshd-words-that-sustain-us/) - Join us for our next Living Spiritually with FSHD Gathering as we reflect on scripture passages, Bible teachings, and other wisdom literature that have inspired and strengthened us along our faith journeys—especially in the midst of living with FSHD. Together, we will share the words that have brought comfort, hope, resilience, and perspective during times
- [Women on Wellness: Nourishing Strength and Emotional Well-Being](https://www.fshdsociety.org/event/wow-3-4-2/) - Moderator: Ranae Beeker Join us for our March Women on Wellness Gathering Place as we explore the important role nutrition plays in supporting both physical strength and emotional health. Together, we’ll discuss how key nutrients can help sustain energy, support muscle function, and promote overall well-being while living with FSHD. This session will offer a
- [Nevada Chapter Meeting](https://www.fshdsociety.org/event/nevada-chapter-meeting-2/) - We will catchup and discuss learnings from my attendance at the recent Volunteer Leadership Summit conference, including clinical trial updates, being ready for treatments upon FDA approval, etc.
- [Chicagoland Chapter Meeting](https://www.fshdsociety.org/event/chicagoland-chapter-meeting/) - Join the Chicago chapter for a virtual meeting!
- [Young Adults: Understanding Insurance for People with FSHD](https://www.fshdsociety.org/event/young-adults-2026-2/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. Due to unforseen circumstances, the February meeting has been moved to March 16. Understanding Insurance for People with
- [Wellness Hour: Second Annual Art and Creativity Gallery](https://www.fshdsociety.org/event/wellness-art-2/) - Join us for a special two-hour Wellness Hour celebrating the creativity, talent, and spirit of the FSHD community. This virtual art show will showcase the many ways our members express themselves—from painting, photography, writing, and music to crafts, textiles, and more. Come be inspired as we highlight the unique voices and creative outlets that uplift
- [Montréal FSHD 360](https://www.fshdsociety.org/event/montreal-fshd-360/) - Join us at our upcoming FSHD 360 regional conference where you’ll hear directly from experts and medical professionals about the latest in research, treatments, and care. You’ll also be able to connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This event covers more than
- [Western PA & Columbus Joint Chapter Meeting](https://www.fshdsociety.org/event/pa-ohio-chapter-meeting/) - This is a joint meeting between the Western PA Chapter and the Columbus Chapter. We will be welcoming Ashley Ferreira, the FSHD Society's Director of Education, to talk about Preparing for Future FSHD Treatments - Passport to Readiness. It's a great opportunity to learn more about what we need to do to be prepared and
- [CarePartner Hour](https://www.fshdsociety.org/event/carepartner-hour-2026-2/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [2026 FSHD Connect Conference](https://www.fshdsociety.org/event/2026-connect-conference/) - The Future in Motion: Empowerment, Connection, and Care for Life with FSHD Uniting patients, families, and experts to equip, connect and prepare for what lies ahead. June 26–28, 2026 Hyatt Regency O’Hare Chicago Join us in Rosemont, IL (the Greater Chicago area) for the 2026 FSHD Connect Conference—our biennial global gathering dedicated to education, connection,
- [FSHD U: Life Insurance Options for Individuals with FSHD](https://www.fshdsociety.org/event/fshdu-life-insurance/) - Thursday, Match 5 @ 1:00 pm ET Presenter: Robert Bland, CEO LifeQuotes Many people living with FSHD assume they are not eligible for life insurance—but that isn’t always the case. Join us for this informative FSHD University webinar with Robert Bland, CEO of LifeQuotes, as he explains the life insurance options that may be available
- [New England Chapter Meeting](https://www.fshdsociety.org/event/new-england-chapter-meeting-2/) - Come join us for the first New England Chapter meeting of the year. I am eager to share with you the latest information from the January Volunteer Leadership Summit, including: what you need to know to be treatment ready, the current drug development landscape, important government advocacy and an exciting high-five challenge to raise awareness.
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-3-22-26/) - Join us for a Bay Area Chapter Meeting! Please RSVP for the meeting location or zoom link details.
- [Western PA - 5th Annual Family Picnic](https://www.fshdsociety.org/event/pa-picnic-8-1-26/) - 5th Annual Family Picnic August 1, 2026 | 12:00-3:00pm ET Adams Township Community Park, Township Pavilion 698 Valencia Rd., Mars, PA 16046 Please join us once again for this fun, in-person event where we can be in community and enjoy time together. Please RSVP so that we know how many people to expect!
- [2026 International Research Congress on FSHD](https://www.fshdsociety.org/event/2026-irc-chicago/) - Join us for the 2026 International Research Congress on FSHD June 25-26 in Chicago Join us in Rosemont, Illinois (Greater Chicago area) for our annual global gathering dedicated to advancing research in Facioscapulohumeral Muscular Dystrophy (FSHD). The 2026 IRC convenes leading scientists, clinicians, industry partners, and emerging investigators to collaborate at the forefront of discovery
- [Iowa Chapter In-Person Gathering](https://www.fshdsociety.org/event/iowa-chapter-in-person-gathering/) - Time: 11:00am - 1:00pm Location: Big Grove Brewery 1225 S Gilbert St., Iowa City 52240 We’re excited to host the very first official meeting of the Iowa FSHD Chapter! This gathering will be a relaxed meet and greet, with a few light agenda items to help us set the initial direction of our chapter. This
- [FSHD University: Travel Without Limits: Exploring the World with FSHD](https://www.fshdsociety.org/event/fshdu-travel-without-limits/) - Thursday, April 16 at 1:00 pm ET Presenter: Mollie Garrett, Garrett Travel Adventures, LLC Mollie Garrett, a travel expert who specializes in accessible travel for individuals with disabilities and who brings her own lived experience as a traveler with FSHD, will share her personal journey navigating the world with FSHD, along with practical tips that
- [FSHD University: Employment Rights 101: Disability Protections and Navigating the Workforce with FSHD](https://www.fshdsociety.org/event/fshdu-employment-rights-101/) - Thursday, March 19 at 1:00 pm ET Presenter: Marisa Spain, Disability Rights Advocate, Disability Rights Michigan Join disability rights advocate Marisa Spain as she provides our community with a clear and practical overview of Title I of the Americans with Disabilities Act (ADA) and its implications for workers with disabilities. This session will explore key
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-rountable/2026-07-21/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: The Parents' Roundtable will meet quarterly starting in 2026. We will meet in January, April, July, and October of 2026. Join us for our Parents’ Roundtable on the 3rd Tuesday, where parents meet to exchange ideas,
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-rountable-2/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT New Schedule: Parents' Roundtable is shifting to a quarterly meeting schedule. We will meet the 3rd Tuesday of January, April, July, and October in 2026. Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each
- [Everything Early Onset](https://www.fshdsociety.org/event/everything-early-onset-4/2026-02-09/) - 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It will be a space to connect, find understanding,
- [Living Spiritually with FSHD: Giving and Receiving Support with Purpose](https://www.fshdsociety.org/event/living-spiritually-2026-2/) - 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Giving and Receiving Support with Purpose Join us for our next Living Spiritually with FSHD Gathering as we explore how helping others—and allowing others to help us—can bring meaning, joy, and connection, even as we navigate our own challenges. Together, we’ll reflect on ways
- [Living Spiritually with FSHD](https://www.fshdsociety.org/event/living-spiritually-2026/) - Living Spiritually with FSHD is a Gathering Place group that offers a welcoming space for individuals exploring the connection between faith and life with FSHD. Whether your spiritual journey has been shaped by your diagnosis or your beliefs have influenced how you navigate FSHD, this group invites open conversation, reflection, and support. All beliefs are welcome,
- [Women on Wellness: Gifts of the Hands, Heart, and Head](https://www.fshdsociety.org/event/women-on-wellness-2026-3/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Gifts of the Hands, Heart, and Head Join us for a Women on Wellness Gathering Place session focused on navigating grief while recognizing the strengths that emerge through adaptation. Together, we’ll reflect on how the
- [Wellness Hour](https://www.fshdsociety.org/event/wellnesshour-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The topic for the FSHD Society’s February 9th (2026) Wellness Hour is: Identity, Energy, and Being Seen relating to FSHD. Ginny Plihcik will be leading a conversation that is relevant to each one of us: how we feel, how we
- [Wellness Hour, Saturday Session](https://www.fshdsociety.org/event/wellness-hour-7-2/) - Welcome to Our New Saturday Wellness Hour Join us for the launch of our new monthly Saturday Wellness Hour, created to offer another opportunity for connection and support for those who are unable to attend our Monday sessions. During this first meeting, we’ll share the vision for this new space, gather your feedback on topics
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-26t/) - 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any safety
- [Virginia Chapter Meeting - In-Person VLS Debrief](https://www.fshdsociety.org/event/virginia-chapter-meeting-in-personvls-debrief/) - Join your Virginia Chapter Directors, Mollie & Gary, as we share what we learned at the 2026 FSHD Society Volunteer Leadership Summit. We gathered for two days of intensive learning, sharing, brainstorming, and collaborating with other chapter directors and directors of the FSHD Society and now it's time to share that knowledge with you! Please
- [FSHD University: Occupational Therapy for Real Life: Home & Daily Living Solutions for People with FSHD](https://www.fshdsociety.org/event/ot-for-real-life/) - Occupational Therapy for Real Life: Home & Daily Living Solutions for People with FSHD Presenter: Cynthia Lourie, MS, OTR/L, ECHM, CAPS Living with FSHD can make everyday tasks, from getting dressed to preparing meals to navigating your home, more challenging. Occupational therapy (OT) focuses on helping people build or maintain independence in the activities that
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting-2/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [Looking Back, Moving Forward: 2026 FSHD Parents Roundtable](https://www.fshdsociety.org/event/parents-roundtable-2026-1-20/) - Looking Back, Moving Forward: 2026 FSHD Parents Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for the first FSHD Parents Roundtable of 2026 where we’ll take a look back at all we accomplished in 2025 and share what we’ll be carrying forward into 2026 to
- [Virginia Chapter Meeting](https://www.fshdsociety.org/event/virginia-chapter-meeting/) - You're invited to our next FSHD Society Chapter Meeting – a supportive space to connect with others who understand your journey. This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Whether you’re looking to share your story, hear from others, or
- [NY/NJ Chapter Meeting](https://www.fshdsociety.org/event/ny-nj-chapter-meeting/) - This is a gathering meeting for the NY/NJ Chapter. Agenda will primarily focus on interaction and collaboration. RSVP: Chapter Meeting RSVP
- [North Texas Chapter Meeting](https://www.fshdsociety.org/event/north-texas-1-28-26/) - Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! ~Glen Denehie, North Texas Chapter Director
- [Carolinas Chapter Meeting](https://www.fshdsociety.org/event/1-15-carolinas/) - North and South Carolina friends, please join us for our 'Third Thursday' chapter meeting! RSVP: Chapter Meeting RSVP
- [Pacific Northwest Chapter Meeting - QiGong with Trish](https://www.fshdsociety.org/event/pnw-qigong/) - Exact Time TBD Join us in Portland, Oregon for an enriching QiGong practice with Trish Kean, one of our fellow FSHDers. Trish has maintained a daily QiGong practice since 2005. She has trained under the guidance of Master Zhongxian Wu and has her certification in several QiGong lineages. She has found her QiGong practice very
- [Alberta Chapter Meeting](https://www.fshdsociety.org/event/alberta-2-5-26/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT Canada-Wide Online Meeting, hosted by Alberta, providing updates on what is important and relevant to Canadians living with FSHD in 2026. We will have several guest speakers: Neil Camarta to provide updates on FSHD Canada Foundation and the work they are doing. Blaine Penny
- [Wellness Hour](https://www.fshdsociety.org/event/wellnesshour-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Wellness Hour Check-in for 2026: Reflecting on Previous Topics and Planning for Future Sessions This session will also include a short drum circle, so bring anything you would like to bang on, such as instruments, a table, or pots and
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2026-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by Anna Gilmore, Chief Program Officer at the FSHD Society who will provide us with a mini session on lobbying and working with your local, state, and national legislators.
- [Young Adults](https://www.fshdsociety.org/event/young-adults-2026/2026-08-17/) - Young Adults Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT NEW DATE AND TIME: Third Monday of every OTHER month. We will meet in February, April, June, August, October, December in 2026. FSHD Young Adults is a social and support group focused on encouraging and empowering young
- [Feeling Fit with FSHD - Qigong and Tai Chi with Frank Hanley](https://www.fshdsociety.org/event/feeling-fit-2026r-2/) - Qigong and Tai Chi with Frank Hanley 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for
- [Feeling Fit with FSHD - Renewal in the New Year: Chair Yoga with Donna Russo](https://www.fshdsociety.org/event/feeling-fit-26t-2/) - Renewal in the New Year: Chair Yoga with Donna Russo 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time.
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/straight-talk-262/2026-01-13/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and your favorite podcast app. Subscribe
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/straight-talk-264/2026-01-27/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and your favorite podcast app. Subscribe
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-2026r/) - 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any safety
- [CarePartner Hour](https://www.fshdsociety.org/event/carepartner-hour-2026/2026-01-27/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Women On Wellness - Open Discussion](https://www.fshdsociety.org/event/women-on-wellness-4-3-2-4/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Open Discussion, bring your topics to discuss. We will also look into the 2026 Calendar, topic wishes and more. We will open 30 minutes earlier than the official start time, for an open forum to
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2-5/) - Cancelled due to the Holiday 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon)
- [PNW - Mix It Up Social Hour](https://www.fshdsociety.org/event/pnw-mix-it/) - Mix it Up Social Hour - We will mix a special seasonal cocktail together, toast the season, and spend some social time together.
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tim-hollenback-2-2-2/) - Tim Hollenback is hosting his first-ever Ask Me Anything episode with a panel of FSHD experts. Join Tim for a conversation with Amanda Hill and Drs. Lucienne Ronco & Michelle Mellion as they answer YOUR questions. On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with
- [Rescheduled: FSHD University: Understanding Gene Therapy in FSHD](https://www.fshdsociety.org/event/fshd-university-understanding-gene-therapy-in-fshd/) - Reschedule to Thursday, December ber 11 | 1:00 PM ET Webinar Presenters: Dr. Lucienne Ronco, PhD, FSHD Society Dr. Lawrence Hayward, UMass Chan Medical School Dr. Wes Miller, Epicrispr This FSHD University webinar will take a closer look at how gene therapy is being developed to target the root cause of FSHD. Our presenters will
- [Rescheduled: Los Angeles Chapter In-Person Gathering](https://www.fshdsociety.org/event/la-11-15-25/) - Rescheduled to Dec. 13 due to inclement weather. 12:00pm PT at Santa Monica Brew Works - 1920 Colorado Ave., Santa Monica, CA, 90404 Join us for pizza and drinks, and meet fellow walkers, rollers, families, and friends! We are gathering for lunch at a local restaurant, Santa Monica Brew Works! Please come share your story,
- [Nevada Chapter Meeting](https://www.fshdsociety.org/event/nevada-chapter-meeting/) - We are getting the Nevada Chapter back together to meet new people and reconnect.
- [Pacific Northwest Chapter Meeting](https://www.fshdsociety.org/event/pacific-northwest-chapter-meeting/) - Mix it Up Social Hour - We will mix a special seasonal cocktail together, toast the season, and spend some social time together.
- [Living Spiritually with FSHD](https://www.fshdsociety.org/event/living-spiritually-with-fshd-4/) - We are very excited about our next Living Spiritually with FSHD meeting as we discuss how faith and wisdom traditions can help us manage and transcend adversity and suffering. Rabbi Eric Feld, the Associate Rabbi and Director of Lifelong Learning at Ahavath Achim Synagogue, one of Atlanta's oldest Jewish congregations, will be joining us to
- [NYC Chapter Meeting](https://www.fshdsociety.org/event/nyc-chapter-meeting/) - We will provide a Walk & Roll update. Update on FSHD Society activities, clinical trials, date for in person meeting in February and open discussion forum.
- [Western PA Chapter Meeting](https://www.fshdsociety.org/event/western-pa-chapter-meeting-2/) - Let's check in, recap the Drum & Roll, get the latest in FSHD news, and discuss holiday hacks and hopes.
- [Living Spiritually with FSHD: Finding Meaning in Redemptive Suffering](https://www.fshdsociety.org/event/living-spiritually-with-fshd-3/) - Join us for our next Living Spiritually with FSHD Gathering as we explore the concept of redemptive suffering—the idea that our struggles and pain are not without purpose, but can be transformed into something meaningful. Together, we’ll discuss how moments of hardship can be offered for the spiritual growth and healing of ourselves and others.
- [Feeling Fit with FSHD: Yoga Breathing and Meditation for De-stressing the Holidays with Kathy Senecal](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4-6/) - 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT Yoga Breathing and Meditation for De-stressing the Holidays The holidays can be joyful—but also stressful. Join us for a relaxing hour with Kathy Senecal, certified chair yoga instructor, focused on simple yoga, breathing, and meditation techniques to help you stay
- [Canceled - Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2-6/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.
- [Young Adults: Adaptive Yoga with Donna Russo](https://www.fshdsociety.org/event/young-adults-5-4-4/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Adaptive Yoga with Donna Russo Join us for our next meeting, where Donna Russo will lead a live demonstration on adaptive yoga designed for individuals with FSHD. Learn how anyone—regardless of mobility—can experience the benefits of yoga through accessible movements like chair
- [Feeling Fit with FSHD: Chair Yoga with Donna Russo - The Power of Gratitude](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4-5/) - 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT Chair Yoga with Donna Russo - The Power of Gratitude As Thanksgiving approaches, take a mindful pause to reconnect with your body and spirit through chair yoga led by Donna Russo. This gentle, accessible session will weave together movement, breath,
- [Wellness Hour: Lifts, Laughs & Libations](https://www.fshdsociety.org/event/38670-16-3-5/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT December’s Wellness Session (Monday, December 8th) is entitled “Lifts”, Laughs and Libations. We ask you to come prepared to share: The things/hacks you say or do to “lift” your spirits when you are feeling down Your favorite, craziest holiday “libation”
- [Wellness Hour: Film Screening & Discussion](https://www.fshdsociety.org/event/38670-16-3-4/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT "Marion or the Metamorphosis" Monday, November 10th, 2025 From 4:00 p.m. – 5:00 p.m. EST Watch the Film From 5:00 p.m. – 6:00 p.m. Wellness Session Discussion (everyone welcome) The next FSHD Wellness Hour on November 10, 2025 will be a Movie
- [Rencontre du Chapitre du Québec/Meeting of the Québec Chapter](https://www.fshdsociety.org/event/rencontre-du-chapitre-du-quebec-meeting-of-the-quebec-chapter/) - Chers amis de la communauté FSHD du Québec, Nous avons le plaisir de vous inviter à une rencontre conviviale du Chapitre du Québec, qui aura lieu le 30 octobre prochain à 18h00 au restaurant Zibo! de Brossard. Ce sera une occasion précieuse de mieux faire connaissance et de discuter ensemble des activités à venir et de
- [Carolinas Chapters' "Third Thursday"](https://www.fshdsociety.org/event/carolinas-chapters-third-thursday/) - North & South Carolina Chapters, please join us for our monthly "Third Thursday" call!
- [Carolina Chapters' "Third Thursday"](https://www.fshdsociety.org/event/carolina-chapters-third-thursday/) - North and South Carolina friends, please join us for our monthly "Third Thursday" meeting!
- [Atlanta FSHD 360](https://www.fshdsociety.org/event/atlanta-fshd-360/) - Saturday, November 8, 2025 Join us at our upcoming FSHD 360 regional conference where you'll hear directly from experts and medical professionals about the latest in research, treatments, and care. You'll also be able to connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This
- [Philadelphia FSHD 360](https://www.fshdsociety.org/event/philadelphia-fshd-360/) - Saturday, November 1, 2025 Join us at our upcoming FSHD 360 regional conference where you'll hear directly from experts and medical professionals about the latest in research, treatments, and care. You'll also connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This event covers more
- [New England Chapter Meeting](https://www.fshdsociety.org/event/new-england-12-2-25/) - Let's check in, get the latest in FSHD news, and discuss holiday hacks and hopes.
- [Ontario Chapter Brunch](https://www.fshdsociety.org/event/ontario-chapter-brunch/) - We're hosting an informal brunch for people with FSHD and their families. This is a space to ask questions and share resources with each other. We also have some exciting chapter updates. We now have an Ontario Chapter Instagram account - find it at @fshdsociety.ontario on Instagram. Additionally, our 5th annual Walk & Roll to
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4-4-3/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for the October Parents Roundtable with special guest Dr. Corrie Erasmus, a leading FSHD researcher from the Netherlands. Dr. Erasmus will present findings from her groundbreaking 5-year study on early onset FSHD, one of the most
- [Colorado/New Mexico Chapter Gathering](https://www.fshdsociety.org/event/colorado-new-mexico-chapter-gathering/) - Colorado/New Mexico Chapter Gathering 10:00am MT at Postino Highlands Ranch - 1497 Park Central Drive, Highlands Ranch, CO 80129 Come and enjoy our year end celebration. New location and new time to better accommodate everybody's busy schedule. No agenda, but many reasons to celebrate, so come join us for food, drink, and companionship!
- [Twin Cities Marathon](https://www.fshdsociety.org/event/twin-cities-marathon/) - Twin Cities Marathon or 10 Mile Join us for The Most Beautiful Urban Marathon in America®️, winding through downtown districts and crossing the Mississippi River. The FSHD Society will participate in this event to raise funds for - and awareness about - FSHD treatments and a cure. Twin Cities Marathon website. For more information on
- [Feeling Fit with FSHD - Chair Yoga with Donna Russo](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2-4/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.
- [Young Adults - Discussions on Eyecare](https://www.fshdsociety.org/event/young-adults-5-4-3/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re
- [Women on Wellness - Rescheduled](https://www.fshdsociety.org/event/women-on-wellness-rescheduled/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This meeting will be a session of chair yoga led by Donna Russo. We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-4-3-2/2025-11-05/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4/2025-10-09/) - Feeling Fit with FSHD 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT In this Feeling Fit workshop, Frank Hanley will review the Fall Prevention strategies and exercises that he presented in part 1 of this workshop. In this session we will ... review how deliberate, well-placed steps can
- [Carolinas Chapter Meeting](https://www.fshdsociety.org/event/carolinas-chapter-meeting/) - North Carolina & South Carolina friends, please join us for our monthly "Third Thursday" call! RSVP: Chapter Meeting RSVP
- [FSHD University - Preventing Falls: Moving with Balance, Awareness, and Intention](https://www.fshdsociety.org/event/fshd-university-preventing-falls-moving-with-balance-awareness-and-intention/) - Join us for an engaging FSHD University session with Frank Hanley as he explores practical strategies to improve balance, stability, and confidence while reducing the risk of falls. Frank will focus on two key themes: Stepping – Learn how deliberate, well-placed steps can enhance stability and make movement safer, even for those with limited mobility.
- [FSHD University: Mind-Body Connection: Using Mindfulness and Relaxation Techniques to Improve Well-being](https://www.fshdsociety.org/event/fshdu-mind-body/) - Mind-Body Connection: Using Mindfulness and Relaxation Techniques to Improve Well-being Presenter: Sixto Garcia, M.A. LMFT Start the new year with tools to support your emotional and physical health. Join us on January 15, 2026, for an engaging FSHD University webinar with Sixto Garcia, M.A., LMFT, as he explores the powerful connection between the mind and
- [FSHD University: Smart Home Technologies for Individuals with FSHD](https://www.fshdsociety.org/event/fshdu-smart-home/) - Smart Home Technologies for Individuals with FSHD Presenters: Justin Hill & Don Burke Join us for an exciting FSHD University webinar exploring how smart home technologies can make daily life easier and more accessible for individuals living with FSHD. Community members Justin Hill and Don Burke, both passionate and avid users of smart technology, will
- [FSHD University: Navigating Medicare – Maximizing Your Benefits with FSHD](https://www.fshdsociety.org/event/fshd-university-10-30-25/) - Navigating Medicare – Maximizing Your Benefits with FSHD Presenter: Bill Maclean Understanding Medicare can feel overwhelming, especially when living with FSHD or caring for someone who is. Join us for this informative FSHD University webinar with Bill Maclean, a volunteer Medicare consultant, who will break down the essentials of Medicare and help you better understand
- [North Texas Monthly Chapter Meeting](https://www.fshdsociety.org/event/nortex-10-29-25/) - Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! ~Glen Denehie, North Texas Chapter Director
- [New England Chapter Meeting](https://www.fshdsociety.org/event/new-england-chapter-meeting/) - Check in, get the latest from the FSHD Society, and the group will share in areas of interest.
- [FSHD University: 2025 Annual Drug Development Update](https://www.fshdsociety.org/event/fshd-university-2025-annual-drug-development-update/) - 2025 Annual Drug Development Update Presenter: Dr. Lawrence Korngut Join us for our final FSHD University webinar of 2025 as we take a deep dive into the latest progress in FSHD drug development. Dr. Lawrence Korngut, Associate Professor of Neurology and Clinical Neurosciences at the University of Calgary, will provide an up-to-date overview of ongoing
- [North Carolina 3rd Thursday](https://www.fshdsociety.org/event/north-carolina-3rd-thursday/) - 7:00pm ET, via Zoom Join the North Carolina Chapter for our monthly "Third Thursday" meeting. RSVP: Chapter Meeting RSVP
- [Minnesota Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/minnesota-walk-roll-to-cure-fshd/) - 2025 Minnesota Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [St. Louis Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/st-louis-walk-roll-to-cure-fshd/) - 2025 St. Louis Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Everything Early Onset](https://www.fshdsociety.org/event/everything-early-onset-3-8-2/) - NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Join us for a discussion around the struggles and solutions of having early onset FSHD while pursuing higher education. We
- [Living Spiritually with FSHD](https://www.fshdsociety.org/event/living-spiritually-with-fshd/2025-12-02/) - Living Spiritually with FSHD is a Gathering Place group that offers a welcoming space for individuals exploring the connection between faith and life with FSHD. Whether your spiritual journey has been shaped by your diagnosis or your beliefs have influenced how you navigate FSHD, this group invites open conversation, reflection, and support. All beliefs are welcome,
- [Living Spiritually with FSHD](https://www.fshdsociety.org/event/living-spiritually-with-fshd-2/) - Join us for the very first meeting of our newest Gathering Place group, Living Spiritually with FSHD! This group is designed to provide a welcoming space where we can connect, share, and explore the ways faith and FSHD intersect in our lives. During this first session, we’ll introduce ourselves, discuss the goals and purpose of the
- [Young Adults](https://www.fshdsociety.org/event/young-adults-5-4-2/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us on September 15 for the next Young Adults Gathering Place hour! We’re excited to welcome Frank Hanley, who will share his expert insights on the top exercises for people living with FSHD. Whether you’re looking to build strength,
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/2025-nortex-virtual-meetings-3-2/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Please RSVP
- [Wellness Hour](https://www.fshdsociety.org/event/38670-16-3-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a powerful Gathering Place session with Patricia Isis, PhD, LMHC-QS, ATR-BC, ATCS, a Certified Teacher of Mindful Self-Compassion. This session will focus on understanding and easing the weight of shame, one of the most challenging human emotions.
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-4-3-2-3/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Come and learn about the many different forms of adaptive sports there are out there... from someone who has enjoyed so many of them... successfully. Presented by our own Dee Squire! We will open
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2-3/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Chair Yoga This class, taught by Donna Russo, BA in Dance, from Mercyhurst University certified in Chair Yoga, concentrates on breathing techniques and meditation to help relieve stress.
- [Feeling Fit with FSHD: Preventing Falls: Moving with Balance, Awareness, and Intention](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4-4/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Preventing Falls: Moving with Balance, Awareness, and Intention September is “Fall Prevention Month” In this Feeling Fit workshop, Frank Hanley will discuss Fall Prevention and explore two themes:
- [Ontario Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/ontario-walk-roll-to-cure-fshd/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Reunion du la Chapitre du Québec/Quebec Chapter Introductory Virtual Meeting](https://www.fshdsociety.org/event/reunion-de-la-chapitre-du-quebec-quebec-chapter-introductory-virtual-meeting/) - Réunion du lancement du chapitre du Québec/Launch meeting of the Montreal (Quebec) Chapter 7:00pm ET, sur Zoom/via Zoom Ordre du jour Présentation brève de l’histoire de la FSHD Society et de ses chapitres canadiens Présentation de la mission de la FSHD Society et du rôle des chapitres Informer la communauté sur les principales activités à
- [Los Angeles Chapter Virtual Meeting](https://www.fshdsociety.org/event/9-26-los-angeles/) - 7:00pm PT, via Zoom Local Chapter Meeting to discuss everything LA and FSH, share ideas, personal stories and connect!
- [Eastern & Central Time Zones Chapter Meeting](https://www.fshdsociety.org/event/eastern-central-time-zones-chapter-meeting/) - Tuesday, August 26 7:00pm ET / 6:00pm CT / 5:00pm MT / 4:00pm PT We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2-2/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for this month's Feeling Fit with FSHD, where Kathy Senecal will lead a an accessible chair yoga class designed for all mobility levels, including those who
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4-3/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for this month's Feeling Fit with FSHD, where Kathy Senecal will lead a an accessible chair yoga class designed for all mobility levels, including those who
- [Young Adults](https://www.fshdsociety.org/event/young-adults-6/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us for the next Young Adults Gathering Place as we welcome special guest Rick Whitehead for an open and informative conversation about his personal journey with abdominal surgery and the use of supportive devices. Whether
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4-4-4/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for the next Parents Roundtable on August 19th, featuring Dr. Kathy Mathews, who will discuss genetic testing for children and how to talk with your child about an FSHD diagnosis. This important conversation will explore both
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-4-3-2-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Kathy Senecal will provide Part II of Yogic Breathing Techniques. If you missed part I please don’t hesitate to join us. Kathy is excellent and will provide the tools we need to fully participate. We
- [Wellness Hour](https://www.fshdsociety.org/event/38670-16-3-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for the upcoming FSHD Wellness Hour, where we’ll share and explore the best life hacks for managing life with FSHD. Whether you're living with FSHD or caring for someone who is, this is a great opportunity to learn
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4-4-2/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for the September Parents Roundtable featuring guest speaker Amber Salzman, CEO of Epicrispr and passionate parent advocate. Amber will share her personal journey as a parent in the rare disease space and how it led her
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4-4/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and
- [Bay Area Hybrid Chapter Meeting](https://www.fshdsociety.org/event/bay-area-hybrid-chapter-meeting/) - Sunday, August 10, 2025 at 1:00pm PT Stanford University, Hoover 208, 213 Quarry Rd, Palo Alto, CA or Virtual via Zoom (RSVP for the link) Please join us for the SF Bay Area Chapter meeting on Sunday, August 10, at 1pm, at Stanford in the Hoover bldg, Room 208. We are excited to have our
- [Young Adults](https://www.fshdsociety.org/event/young-adults-5-4/2025-12-15/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re
- [Mountain & Pacific Chapters Meeting](https://www.fshdsociety.org/event/mountain-pacific-chapters-meeting/) - Monday, August 25 5:00pm PT / 6:00pm MT / 7:00pm CT / 8:00pm ET We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2-4-2-2/2025-08-26/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Wellness Hour](https://www.fshdsociety.org/event/38670-16-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in
- [New Jersey Shore Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-jersey-shore-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-5/) - When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular exercise,
- [British Columbia and Alberta Chapters - Virtual Meeting](https://www.fshdsociety.org/event/4-10-bc_alberta-chapter-meetings/) - 9:00pm ET | 8:00pm CT | 7:00pm MT | 6:00pm PT British Columbia and Alberta Chapters - Virtual Meeting When: Wednesday April 10th, 6pm PT | 7pm MT Where: Virtually via Zoom, please RSVP below to receive the Zoom link What: We are excited to have special guest Lena Graham joining us! Lena is a
- [North Carolina Chapter Baseball Game](https://www.fshdsociety.org/event/north-carolina-baseball-game/) - North Carolina Chapter Baseball Game Saturday, August 23, 6:00pm, Hickory Crawdads Stadium 2500 Clement Blvd NW, Hickory, NC 28601 Join us for a night at the ballpark! There are 30 spots reserved. We cannot exceed 30. So, the sooner everyone reserves your ticket, the better! Just a FYI there is a $5 parking fee and
- [New England Chapter In-Person Meeting](https://www.fshdsociety.org/event/new-england-chapter-in-person-meeting-august-10-2025/) - New England Chapter In-Person Meeting: August 10, 2025 12:00pm at Harry C Barnes Memorial Nature Center - 175 Shrub Road Bristol CT 06010 Come join the FSHD New England community for a casual luncheon at the Barnes Nature Center. Lunch will be provided and RSVP required. There is a beautiful mile-long wheelchair accessible trail through
- [San Diego Chapter In-Person Meeting](https://www.fshdsociety.org/event/san-diego-chapter-in-person-meeting/) - San Diego Chapter In-Person Meeting with Avidity August 9th, 2025 | 10:15am PT Carmel Mountain Ranch Library, 12095 World Trade Dr., San Diego, CA 92128 Speakers from Avidity Biosciences are joining the San Diego Chapter to discuss the most up to date information on Del-Brax. Please RSVP and join us at the Carmel Mountain Ranch
- [Western PA Chapter Picnic](https://www.fshdsociety.org/event/western-pa-chapter-picnic/) - Western PA Chapter Picnic 12:00pm ET, Adams Township Community Park, Township Pavilion, 698 Valencia Rd., Mars, PA 16046 RSVP: Chapter Meeting RSVP
- [New England Monthly Virtual Meeting](https://www.fshdsociety.org/event/ne-july-meeting/) - New England Monthly Virtual Meeting Wednesday, July 30th, 2025 at 7:00pm ET via Zoom - RSVP for the link Join us for an informal gathering on zoom to hear the latest in FSHD news and discuss the details of the upcoming in-person luncheon as well as our annual walk and roll on September 21.All
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2-4-2/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [FSHD University - The Burden of FSHD](https://www.fshdsociety.org/event/fshd-university-the-burden-of-fshd/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT The Economic Burden of FSHD Presenters: June Kinoshita and Amanda Hill, FSHD Society Living with FSHD comes with many hidden costs—not just physically and emotionally, but financially as well. Yet little is known about
- [Young Adults](https://www.fshdsociety.org/event/young-adults-5-3/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Presenters: Beth & Jeff Johnston You're invited to a special Young Adults Gathering Place focused on love, connection, and navigating relationships with FSHD. We’re thrilled to welcome Beth Johnston from the FSHD Society and her husband
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-4-2/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Presenter: Kathy Senecal, FSHD patient and Registered Yoga Therapist with specialty training in Yoga for Disabled Folks This yoga class is designed specifically for folks with FSHD. You
- [FSHD University: The Global FSHD Innovation Hub](https://www.fshdsociety.org/event/fshd-university-the-global-fshd-innovation-hub/) - Learn about the Global FSHD Innovation Hub, a collaborative platform designed to accelerate the development of FSHD therapeutics and get treatments to patients faster.
- [FSHD University: The Opportunities of Strength Training in FSHD](https://www.fshdsociety.org/event/fshdu-strength-training/) - In this FSHD University webinar, we’ll dive into the role of strength training and how it may help support mobility, function, and overall well-being.
- [Dakotas Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/dakotas-walk-roll-to-cure-fshd/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tom-hollenback-2-2/2025-07-08/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7-2/2025-07-24/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tim-hollenback-2-2/2025-07-22/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [FSHD University - The Role of the Physiatrist in Managing FSHD](https://www.fshdsociety.org/event/fshdu-physiatrist/) - The Role of the Physiatrist in Managing FSHD Thursday, July 17 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Most people with FSHD have heard they should see a neurologist. But when we advise them to also establish care with a physiatrist,
- [Everything Early Onset](https://www.fshdsociety.org/event/everything-early-onset-3-8/2025-07-14/) - NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community
- [Dakotas Chapter In-Person Meeting](https://www.fshdsociety.org/event/dakotas-7-13-25/) - Dakotas Chapter In-Person Meeting Sunday, July 13 from 2:00-3:00pm Location: 3788 55th Ave S, Fargo, ND 58104 Please join us for a FSHD Society Dakotas Chapter social gathering.
- [PNW Chapter Virtual Meeting](https://www.fshdsociety.org/event/pnw-chapter-virtual-meeting/) - Please join us for a PNW virtual meeting, where we will discuss navigating access to the FORWARD clinical trial.
- [Los Angeles Chapter Virtual Meeting](https://www.fshdsociety.org/event/los-angeles-chapter-virtual-meeting/) - Los Angeles Chapter Virtual Meeting Friday, June 27, 2025, 7:00pm-8:00pm PT, Virtual via Zoom - RSVP for the link Please join us for our annual Los Angeles chapter meeting to connect, provide feedback, and support. All are welcome.
- [Intermountain (Idaho Falls) Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/intermountain-walk-roll-to-cure-fshd/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support.
- [FSHD University - Update from Avidity Biosciences](https://www.fshdsociety.org/event/fshd-university-update-from-avidity-biosciences/) - FSHD University - Update from Avidity Biosciences Tuesday, June 24th 1:00 pm ET Join us for a special FSHD University webinar presented by Avidity Biosciences, a biotechnology company advancing RNA-based therapies for rare muscle diseases. In this session, the Dr. Nicholas Johnson will share an overview of their approach to targeting the root cause of
- [Feeling Fit with FSHD: Qi Gong with Frank Hanley](https://www.fshdsociety.org/event/6-26-25-feelingfit/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Frank Hanley will lead a session of Qi Gong meditation, stretching, and breathwork. For people living with FSHD who are interested in exercise and fitness, we meet on
- [Feeling Fit with FSHD: Chair Yoga with Donna Russo](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-7/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join Donna Russo for a session of chair yoga. Donna has FSHD and uses a power wheelchair. She has adapted a variety of yoga positions and exercises that
- [Wellness Hour on BetterLife FSHD](https://www.fshdsociety.org/event/38670-16-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Kayleigh Worek from the BetterLife FSHD team will take us on a tour of this cutting-edge health and research platform and answer your questions. Join in and hear more about how BetterLife works, what it does, and how it can
- [FSHD University: MRI Biomarkers in FSHD](https://www.fshdsociety.org/event/fshd-university-mri-biomarkers-in-fshd/) - FSHD University: MRI Biomarkers in FSHD Presenter: Seth Friedman, PhD Join us for an FSHD University webinar exploring the role of MRI in facioscapulohumeral muscular dystrophy (FSHD) clinical trials. Dr. Seth Friedman will discuss how advanced imaging helps track disease progression, select trial participants, and evaluate therapeutic impact. This will provide an opportunity to learn
- [2025 FSHD Connect-Europe](https://www.fshdsociety.org/event/2025-fshd-connect-europe/) - FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. We hope to
- [Atlanta Chapter Watch Party for World FSHD Day](https://www.fshdsociety.org/event/atlanta-chapter-watch-party-for-world-fshd-day/) - Atlanta Chapter Watch Party for World FSHD Day Thursday, June 20, 2024 at El Azteca Perimeter, 6115 Peachtree Dunwoody Rd., Ste. 100, Sandy Springs, GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in honor of World FSHD Day! We again plan to meet up at El
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4-3/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This Roundtable has been canceled. Please join us at our July meeting! Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to
- [Tour de Tucson - November 22, 2025](https://www.fshdsociety.org/event/tour-de-tucson-november-22-2025/) - Tour de Tucson - November 22, 2025 El Tour de Tucson is now preparing to host the 42nd year for what we think is one of the premier bicycling events in the country. We hope you participate in this year’s event on November 22, 2025. You won’t be alone given that annually 10,000 cyclists participate
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tom-hollenback-2/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [Young Adults](https://www.fshdsociety.org/event/young-adults-5/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2-4/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable-4/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and
- [Wellness Hour](https://www.fshdsociety.org/event/38670-16/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-4-3/2025-06-04/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our
- [Pacific Northwest Sips & Smores for Smiles](https://www.fshdsociety.org/event/pacific-northwest-sips-smores-for-smiles/) - Register for the Pacific Northwest Sips & Smores and support our annual FSHD fundraising campaign. Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join your online fundraising efforts. Then we will celebrate the Pacific Northwest together with sips and s'mores!
- [FSHD 360 - Vancouver](https://www.fshdsociety.org/event/fshd-360-vancouver/) - FSHD 360 Vancouver Sunday, June 1 from 10:00am-3:30pm Creekside Community Recreation Centre 1 Athletes Way, Vancouver, BC V5Y 1V4, Canada FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Vancouver
- [St. Louis World FSHD Day Celebration](https://www.fshdsociety.org/event/st-louis-world-fshd-day-celebration/) - St. Louis World FSHD Day Celebration 5:30-7:30pm at Hawk Ridge Park (Zachary's Playground) - 8392 Orf Road, Lake Saint Louis, MO 63367 You're invited to our upcoming picnic in celebration of World FSHD Day! We'll also host this event as an official kick-off to our 2025 Walk & Roll season. The picnic will be BBQ-style.
- [ALL East Coast Chapter Meeting](https://www.fshdsociety.org/event/east-coast-regional-2025/) - We’re excited to pilot a new regional meeting format designed to bring more of our FSHD community together. This meeting is for the East Coast and will cover general updates and include regional breakout sessions.
- [British Columbia Chapter - World FSHD Day Celebration](https://www.fshdsociety.org/event/bc-world-fshd-day/) - On June 20th, the Canada Place Sails will glow orange in honour of World FSHD Day—and we’re celebrating with a casual evening gathering at Mahoney & Sons Tavern (Convention Centre). Let’s raise a glass, raise awareness, and light up the night—together.
- [Parents' Roundtable: FSHD history & evolution, a discussion with June Kinoshita](https://www.fshdsociety.org/event/parents-roundtable-6/) - Parents' Roundtable: FSHD history & evolution, a discussion with June Kinoshita 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Our guest this month is June Kinoshita, Senior Director of Research and Education at the FSHD Society. June, who is stepping down from the Society at the end of
- [Chicagoland Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/chicagoland-monthly-meeting-2/2025-06-12/) - Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and
- [New England Chapter Virtual Meeting](https://www.fshdsociety.org/event/new-england-chapter-virtual-meeting-2/) - A meeting space for folks living with FSHD, and their care system, in the New England area.
- [Feeling Fit with FSHD - Get Ready for Summer](https://www.fshdsociety.org/event/feeling-fit-with-fshd-17-8/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Ranae Beeker and Frank Hanley team up to present a summer safety workshop. This workshop will discuss water safety, walking and hiking, driving and travel, water (hydration) and
- [FSHD University - Breathing with FSHD](https://www.fshdsociety.org/event/fshdu-breathing-with-fshd/) - Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s clinic schedule. Joshua Benditt, MD, University of Washington, is a professor of pulmonary, critical care and sleep medicine at the UW School of Medicine. As
- [Virginia Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/virginia-monthly-meeting-2/) - Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/2025-nortex-virtual-meetings-3/2025-06-03/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to
- [Alberta Chapter In-Person Gathering for World FSHD Day](https://www.fshdsociety.org/event/alberta-chapter-in-person-gathering-for-world-fshd-day/) - We are getting together to celebrate World FSHD Day. We are going to meet for drinks and dinner, staying up to see the lighting of the Calgary Tower in ORANGE! Family friendly!
- [Virginia Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/virginia-monthly-meeting-2-2/2025-07-22/) - Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
- [PNW Chapter Baseball Game](https://www.fshdsociety.org/event/pnw-chapter-baseball-game/)
- [Sacramento Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-sacramento-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [North Carolina Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-north-carolina-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Western Pennsylvania Drum & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-drumroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Virginia Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/virginia-walk-roll-to-cure-fshd/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [San Diego Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-sandiego-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [NE Florida Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-ne-fl-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [New England Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-new-england-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [National Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-national-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Michigan Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-michigan-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Mid-Atlantic Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-midatlantic-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Los Angeles Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-la-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Chicagoland Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-chicagoland-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [2025 Texas Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-texas-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [2025 Atlanta Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-atlanta-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Long Island Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-long-island-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Columbus Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-columbus-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Colorado Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-colorado-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [2025 Alberta Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2025-alberta-walkroll/) - The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.
- [Everything Early Onset - Netflix Night](https://www.fshdsociety.org/event/everything-early-onset-3-7/) - NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT This month we're gathering to socialize and get to know one another better. Archer would love to chat about what
- [Young Adults](https://www.fshdsociety.org/event/young-adults-7/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2-3/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Sacramento In-Person Chapter Meeting](https://www.fshdsociety.org/event/sacramento-in-person-chapter-meeting/) - Sacramento In-Person Chapter Meeting Saturday, May 10, 2025 from 10:00AM - 1:00PM PT UC Davis Arboretum - Google Map link: https://maps.app.goo.gl/icACixh8cvPqXGLK8 Join us for a leisurely afternoon at the UC Davis Arobetum. Bring your lunch, snacks and water. We can stroll through their beautiful garden and have lunch under a huge majestic oak tree. Oh,
- [North Carolina Third Thursday Chapter Meeting](https://www.fshdsociety.org/event/north-carolina-third-thursday-chapter-meeting/) - Join us for a virtual meeting for folks living with FSHD, and their care system, in Virginia.
- [Chicagoland Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/chicagoland-monthly-meeting/) - Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and
- [Women On Wellness: Parenting with a Disability](https://www.fshdsociety.org/event/women-on-wellness-4-5/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We’re thrilled to welcome this month’s guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-meeting/) - Bay Area Chapter Meeting Sunday, May 4, 2025 from 1:00pm-4:00pm PT Stanford University, Hoover Pavilion. 211 Quarry Road. Palo Alto, CA 94304, in Hoover 208 At this meeting, we will be joined by David Jaffe from Stanford's Mechanical Engineering Department. He teaches "Perspectives in Assistive Technology" and works with students and community members on projects
- [FSHD University - The Pediatric MOVE Study](https://www.fshdsociety.org/event/fshdu-pediatric-move/) - The Pediatric MOVE Study Thursday, May 15 19:00 CET | 18:00 GMT | 1:00pm Et | 12:00pm CT | 11:00am MT | 10:00am PT More than 50% of people with FSHD develop symptoms as children or teens. When treatments to slow or stop FSHD are approved, common sense suggests that it will be best to
- [FSHD University - Fulcrum's Phase 3 Clinical Trial](https://www.fshdsociety.org/event/fshdu-fulcrums-phase-3/) - FSHD University - Fulcrum's Phase 3 Clinical Trial Wednesday, May 28 1:00 p.m. ET | noon CT | 11:00 a.m. MT | 10:00 a.m. PT | 17:00 GMT | 18:00 CET Fulcrum’s Phase 3 Reach study was the first phase 3 study ever conducted for FSHD. The trial did not meet its primary endpoint and
- [Wellness Hour - Getting to know you](https://www.fshdsociety.org/event/wellness-hour-getting-to-know-you/) - Conversations that Build the FSHD Community 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join the conversation, which will be inspired by questions drawn from David Brooks’ book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen and connect with others who
- [Feeling Fit with FSHD: Waking the Qi with Jennifer Eash](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-6/) - Feeling Fit with FSHD: Waking the Qi with Jennifer Eash 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for "Waking the Qi: A Vibrant Practice to Activate Internal Energy," with Jennifer Eash. Jennifer will lead a 50-minute seated
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-6/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our
- [Ontario Chapter - Virtual Meeting](https://www.fshdsociety.org/event/ontario-chapter-virtual-meeting/) - Ontario Chapter - Virtual Meeting Tuesday March 18, 2025 at 7:00 PM ET Via Zoom - RSVP to get the link. We will discuss our first Ontario FSHD Conference in May that we hope everyone will attend. Also time to ask questions and share ideas. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m8k
- [Parents' Roundtable - Lung Care in Pediatric FSHD](https://www.fshdsociety.org/event/parents-roundtable-4-2/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be joined by Daniel Hinds, MD, a Clinical Assistant Professor of Pediatrics, Division of Pulmonary Medicine at the University of Iowa. Dr. Hinds is the Fellowship Director and Director of the Rare and Diffuse Lung
- [Raise Your Voice! Advocacy Call to Action - FSHD University with Anna Gilmore](https://www.fshdsociety.org/event/3-20-fshdu/) - Raise Your Voice! Advocacy Call to Action - FSHD University with Anna Gilmore 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Are you ready to make an impact for FSHD research? Join us on March 20 as we discuss our call to
- [New England Chapter Virtual Meeting](https://www.fshdsociety.org/event/3-25-25-ne-chapter/) - New England Chapter Virtual Meeting Tuesday, March 25, 2025, from 7:00 pm - 8:00 pm ET Hosted via Zoom - RSVP to get the link We’re excited to invite you to our New England Chapter virtual meeting for March. During this time, our discussion will focus on physical therapy. Chapter Director Kathy Senecal will also
- [Feeling Fit with FSHD - Exercises with Lonwabo](https://www.fshdsociety.org/event/feeling-fit-with-fshd-17-4/) - Special Topic: Demonstrations and illustrations of suitable exercises for all severities of FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo joins us once again for this follow up from his last month’s Feeling Fit discussion. This time, he
- [Columbus Chapter Virtual Meeting](https://www.fshdsociety.org/event/columbus-chapter-virtual-meeting/) - Columbus Chapter Virtual Meeting Thursday, March 27th, 2025 from 7:00 - 8:00pm Zoom Meeting - RSVP for the link Let's gather for our Columbus Chapter Meeting where we will cover the recent chapter leader transition, make member introductions, review the BetterLife program, and discuss the date for our 2025 Walk & Roll to Cure FSHD.
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/2025-nortex-virtual-meetings-2/2025-04-01/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to
- [Women On Wellness - Yoga breathing](https://www.fshdsociety.org/event/women-on-wellness-4-4/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her (in Media Library) is possible. We will
- [British Columbia Chapter - Virtual Meeting](https://www.fshdsociety.org/event/bc-virtual-meeting/) - British Columbia Chapter - Virtual Meeting Wednesday, April 2nd, 2025 - 6:00 PM Via Zoom - link sent upon receipt of RSVP Check in with fellow BC Chapter members to review our walk and roll program and discuss our upcoming FSHD 360 in June.
- [NYC/NJ-Area In-Person Chapter Meeting](https://www.fshdsociety.org/event/nyc-nj-area-in-person-chapter-meeting/) - NYC/NJ-Area In-Person Chapter Meeting Saturday, April 5, 2025 from 10:00AM - 12:00PM ET Madison Cafe & Grill - 4 Pembroke Place 101, Edgewater, NJ 07020 Join us for breakfast and an opportunity to connect in person to share thoughts, exchange ideas, and get informed on the latest updates from the FSHD Society. RSVP: https://go.fshdsociety.org/l/701273/2023-01-13/42py3c
- [Dakotas Chapter In-Person Meeting](https://www.fshdsociety.org/event/dakotas-chapter-in-person-meeting/) - Dakotas Chapter In-Person Meeting Sunday April 6, 2025 at 2:00pm CT Location TBD Join our Spring chapter meeting for the opportunity to reconnect with each other and share our experiences. More information coming soon. RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1
- [Feeling Fit with FSHD - Yoga breathing](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-5/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her
- [Wellness Hour - Therapy for hands](https://www.fshdsociety.org/event/38670-15/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's guest will focus on hands: tips on how to strengthen and the role of occupational therapy. Our guest is Debbie Olerud-Curley COTA/L, a licensed occupational therapy assistant. Debbie graduated from North Dakota State School of Science in 1988.
- [Everything Early Onset - Postponed](https://www.fshdsociety.org/event/everything-early-onset-3-6/) - NEW SCHEDULE: Second Monday of every other month. Next meeting is in May 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and
- [Parents' Roundtable - Dr. Brianna Brun](https://www.fshdsociety.org/event/parents-roundtable-5/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. She is stepping into the legendary Rabi Tawil's role. She'll be talking about the MOVE Pediatric study, the importance of routine clinical appointments for children, and
- [FSHD University: Physiotherapy and exercises with FSHD – Optimising mobility and function](https://www.fshdsociety.org/event/exercise-physical-therapy-for-fshd-2/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Physiotherapy and exercises with FSHD – Optimising mobility and function Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle weakness
- [Arizona Chapter Community Lunch](https://www.fshdsociety.org/event/arizona-chapter-community-lunch/) - Arizona Chapter Community Lunch Saturday, April 19th, 2025 | 12:00-2:00pm Brother John's Beer Bourbon & BBQ - 1801 N Stone Ave, Tucson Please RSVP to Ray at rayjordanau@gmail.com or call 520-461-8125 so we can keep the venue updated with the number of attendees.
- [Western PA Virtual Chapter Meeting](https://www.fshdsociety.org/event/4-21-25-pa-chapter-meeting/) - Western PA Virtual Chapter Meeting Monday, April 21, 2025 from 7:00pm - 8:00pm ET Via Zoom During this meeting we will be joined by Anna Gilmore, Sr. Director of Education & Advocacy, who will provide a tour of the new Care Connector tool and discuss with us its features and future developments. Care Connector is
- [Young Adults - Hang out with Heloise](https://www.fshdsociety.org/event/young-adults-5-2/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We'll be joined by one of our FSHD rock stars, Heloise Hoffmann. Diagnosed at 13, Heloise went through difficult teen years and triumphed as she accepted and even embraced her diagnosis. Now a student at Stanford,
- [St. Louis Chapter Virtual Meeting](https://www.fshdsociety.org/event/st-louis-4-22/) - St. Louis Chapter Virtual Meeting Tuesday, April 22, 2025 at 6:00 pm Virtual via Zoom (link will be sent upon receipt of RSVP) DETAILS: Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-03-01/42xfv2
- [Colorado Chapter In-Person Meeting](https://www.fshdsociety.org/event/4-26-25-colorado-coffee/) - Colorado Chapter In-Person Meeting Saturday, April 26th, 2025 from 9:00 - 11:00 am Bean Fosters - Golden: 720 Golden Ridge Rd, D Golden, Colorado 80401 Informal gathering to catch up on the latest news and share our FSHD journey with friends over coffee. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m9k
- [Feeling Fit with FSHD - Chair yoga](https://www.fshdsociety.org/event/feeling-fit-with-fshd-17-5/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We welcome back Donna Russo to lead a session of chair yoga. She will show us gentle stretches and exercises from yoga that are adapted for people in
- [Greater Philadelphia Chapter In-Person Meeting](https://www.fshdsociety.org/event/greater-philadelphia-chapter-in-person-meeting/) - Greater Philadelphia Chapter In-Person Meeting Saturday, April 26, 2025 from 1:00 - 4:00pm ET Wissahickon Valley Public Library Community Room - 650 Skippack Pike, Blue Bell PA 19422 ***Option to attend virtually via Zoom (RSVP to receive the link) We will gather to catch up, socialize, and discuss BetterLife - a new platform dedicated to
- [New England Chapter Virtual Meeting](https://www.fshdsociety.org/event/new-england-chapter-virtual-meeting/) - Wednesday, April 30, 2025, 7:00 pm – 8:00 pm ET Zoom – RSVP to get the link We’re excited to invite you to our New England Chapter virtual meeting for April. During this meeting, we will discuss: 1. Site proposals for the annual New England Chapter lunch; 2. Program updates and the latest from the
- [2025 International Research Congress on FSHD](https://www.fshdsociety.org/event/2025-international-research-congress-on-fshd/) - Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Join us in Amsterdam for what promises to be a
- [Ontario FSHD 360](https://www.fshdsociety.org/event/ontario-fshd-360/) - Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting/) - We meet virtually via Zoom on the last Wednesday of each month, from 7:00pm – 8:00pm CT RSVP: https://go.fshdsociety.org/l/701273/2022-11-04/3sbgxx
- [Michigan Chapter Meeting](https://www.fshdsociety.org/event/michigan-chapter-meeting-04-28-2025/) - Michigan Chapter Meeting DATE/TIME: Monday, April 28th, 2024 – 7:00PM ET Virtually by Zoom. Please RSVP to receive the link. Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-04-09/433mcc
- [CarePartner Hour](https://www.fshdsociety.org/event/carepartner-hour-2/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Utah Chapter Virtual Meeting](https://www.fshdsociety.org/event/utah-chapter-virtual-meeting/) - Tuesday, April 29, 2025, 7:00pm-8:00pm MT Virtual via Zoom – RSVP for the link Please join us for conversation and support.
- [Wellness Hour - Community Art Project](https://www.fshdsociety.org/event/38670-14/) - 4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT We are planning a special Wellness Hour event this month featuring art from our community members. We are starting one hour earlier than usual to make sure we have enough time. Stay tuned for more details! Our monthly Zoom meeting
- [Multi-Chapter Virtual Meeting](https://www.fshdsociety.org/event/2-25-25-ne-virtual-meeting/) - Multi-Chapter Virtual Meeting Tuesday, February 25, 2025 from 7:00 pm - 8:00 pm ET Zoom - RSVP to get the link This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Hosted by the New England Chapter, this meeting we will be
- [Wellness Hour - FSHD and Family: A Blessing and… a Challenge](https://www.fshdsociety.org/event/38670-13/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Families are our primary social support groups and greatly influence how we live with FSHD. At the same time, every family is unique. In this conversation, we will discuss how our family dynamics affect our adventure with this chronic condition.
- [Parents' Roundtable - Breathing issues](https://www.fshdsociety.org/event/parents-roundtable-3/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Children with early-onset FSHD are at higher risk for respiratory insufficiency. A bad cold can quickly lead to life-threatening complications. We'll be discussing what parents need to know about managing breathing issues and preventing serious outcomes. Join us
- [Everything Early Onset - Teen Talk](https://www.fshdsociety.org/event/everything-early-onset-3-4/) - NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Are you a teenager diagnosed with FSHD? We've been there and know how scary and lonely it can be. Here at Everything Early Onset, we want to be the person we
- [Wellness Hour](https://www.fshdsociety.org/event/38670/2024-11-11/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in
- [North Carolina In-Person Chapter Luncheon](https://www.fshdsociety.org/event/2-15-25-nc-chapter-luncheon/) - North Carolina In-Person Chapter Luncheon Saturday, February 15, 2025 at 1:00 pm ET Little Italy (Winston-Salem area) 696 Angus Street, Rural Hall, NC 27045 - http://www.littleitalyruralhall.com/index.html Please join us for an in-person group lunch! Come connect with fellow members, share updates and enjoy a meal together. RSVP by 2/10 to ensure we have enough seating.
- [Feeling Fit with FSHD - A chat with Lonwabo Nene](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-3/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Rescheduled from January 23. We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have
- [Women On Wellness - Parenting with a disability](https://www.fshdsociety.org/event/women-on-wellness-4-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're thrilled to welcome this month's guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/2025-nortex-virtual-meetings/2024-11-06/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to
- [Young Adults - Nutrition and supplements](https://www.fshdsociety.org/event/young-adults-4/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This is a reschedule of what had been planned for January. Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University
- [Young Adults - Art and Journaling](https://www.fshdsociety.org/event/young-adults-3/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art, poetry,
- [Feeling Fit with FSHD - A chat with Lonwabo Nene](https://www.fshdsociety.org/event/feeling-fit-with-fshd-17-2/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have made a difference to
- [Parents' Roundtable - FSHD science with Heloise](https://www.fshdsociety.org/event/parents-roundtable-2/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Heloise Hoffmann, now a student at Stanford University, explains the science of FSHD to your kids (and you) in easy-to-understand terms. She'll answer your questions and discuss the new treatments that are being developed, including some exciting ideas
- [Colorado/New Mexico Chapter Virtual Meeting](https://www.fshdsociety.org/event/co-nm-virtual-meeting/) - Colorado/New Mexico Chapter Virtual Meeting Tuesday, February 11, 2025 6:00 - 7:00PM MT Zoom meeting - please RSVP for the link This meeting is a chance for our Colorado Chapter to engage with our FSHD community in New Mexico by building better communications, resources and support. Please join us for engaging conversation and brainstorming. RSVP:
- [Virginia Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/virginia-chapter-monthly-virtual-meeting/) - Virginia Chapter Monthly Virtual Meeting Tuesday, January 28, 2025 6:00pm - 7:00pm ET Virtual via Zoom - RSVP for the link Join our monthly meeting for casual conversations! RSVP: https://go.fshdsociety.org/l/701273/2023-03-14/42z7g7
- [Wellness Hour - What about wheelchairs?](https://www.fshdsociety.org/event/38670-12/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Wheelchairs and scooters are a topic of evergreen interest to our community and some of our experts with live experiences will share their wisdom and field your questions. How you know when you will need one? What are the pros
- [Everything Early Onset - Fun with trivia](https://www.fshdsociety.org/event/everything-early-onset-3-3/) - NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Join us at Everything Early Onset for a night of trivia and quizzes on sporcle.com!! Sporcle has a wide variety of categories of trivia quizzes. One of the hosts will share
- [2025 Falmouth Road Race](https://www.fshdsociety.org/event/2025-falmouth-road-race/) - Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the sea, giving back to the community and promoting running, health and fitness! The race happens at 9:00am on Sunday, August 17. This is our third
- [2025 Triple Bypass](https://www.fshdsociety.org/event/2025-triple-bypass/) - The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July 12, 2025. George is the founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for
- [Young Adults - Nutrition and supplements](https://www.fshdsociety.org/event/young-adults-2/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO
- [Everything Early Onset](https://www.fshdsociety.org/event/everything-early-onset-3/2025-03-10/) - NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It
- [Parents' Roundtable](https://www.fshdsociety.org/event/parents-roundtable/2025-03-18/) - Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and
- [NYC/NJ Virtual Chapter Meeting](https://www.fshdsociety.org/event/nyc_nj-1-22-25/) - Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, January 22nd, at 6pm ET! Let's catch up with one another and make plans for the New Year! Please CLICK HERE to RSVP and receive the Zoom link for the meeting. Hope to "see" you there! Warmly, David Rubin, NYC/NJ -
- [Pacific Northwest Chapter New Year Meeting](https://www.fshdsociety.org/event/pacific-northwest-chapter-new-year-meeting/) - Pacific Northwest Chapter New Year Meeting DATE: Saturday, January 25, 2025 TIME: 12:00 to 2:00pm PT WHERE: Both in-person at the Sellwood-Moreland Library Community Room (7860 SE 13th Ave, Portland, OR) and virtual via Zoom. Please RSVP for the Zoom link. DETAILS: Trish Kean has been a licensed massage therapist since 1998 and has had
- [FSHD University: The what, why and how of mindfulness](https://www.fshdsociety.org/event/fshd-university-mindfulness-reduce-stress/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness is a practice that has been shown in clinical trials to reduce stress, anxiety, and depression, issues that many people living with a progressive condition like FSHD experience. These psychological symptoms can in
- [Feeling Fit with FSHD - Chair yoga](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16-2/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Let's start the year off with some chair yoga! Our session will be led by Donna Russo, a yoga enthusiast, wheelchair dancer, and person living with FSHD. Please
- [Women On Wellness - New Year, New Opportunities](https://www.fshdsociety.org/event/women-on-wellness-5/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Today we'll have an open discussion, starting with the topic of "new year, new opportunities." Ranae, our moderator, will also sharing something related to what we talk frequently about... what do all the terms related to
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tim-hollenback-2/2025-01-28/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [Sacramento Chapter In-Person Social Gathering](https://www.fshdsociety.org/event/sacramento-chapter-in-person-social-gathering/) - Sacramento Chapter In-Person Social Gathering Saturday, January 18, 2025, from 10:00am-12:00pm PT Cosumnes River Preserve - 13501 Franklin Blvd, Walnut Grove, CA 95690 Kick off the New Year with the Sacramento FSHD Society Chapter by joining us for a fun community-building event. We will be meeting at Cosumnes River Preserve in Walnut Grove to go
- [FSHD Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-straight-talk-with-tom-hollenback/2025-01-14/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-17/2025-02-27/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-16/2025-03-13/) - Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S.
- [Young Adults](https://www.fshdsociety.org/event/young-adults/) - Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-4/2025-03-05/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our
- [San Diego Chapter Virtual Education Meeting](https://www.fshdsociety.org/event/san-diego-chapter-virtual-education-meeting/) - San Diego Chapter Virtual Education Meeting DATE: Thursday, January 16th, 2025 TIME: 5:30 - 6:30pm PT WHERE: Zoom Meeting - RSVP for the link DETAILS: Let's kick off 2025 with BetterLife, a health and research platform for people with FSHD. Join us as Kayleigh Worek, Program Manager for BetterLife FSHD at the FSHD Society provides
- [Young Adults - Art and Journaling](https://www.fshdsociety.org/event/young-professionals-23/) - NOTE CHANGE OF TIME: 9:00 pm ET | 8:00 pm CT | 7:00 pm MT | 6:00 pm PT RESCHEDULED FROM SEPTEMBER MEETING Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her
- [New England Chapter Virtual Meeting](https://www.fshdsociety.org/event/12-11-24-new-england-chapter-virtual-meeting/) - New England Chapter Virtual Meeting Monday, January 13, 2025 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-03-03/42xr1c Join us for chapter and FSHD Society updates, a debrief and takeaways from the November 2nd UMASS 360 event, and ideas for the year ahead. Additionally, we'll pose this question for discussion: How do you use your creativity and resilience for
- [Parents' Roundtable - News updates](https://www.fshdsociety.org/event/early-onset-parent-roundtable-10/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This has been an eventful year for pediatric initiatives. Ally Roets will report on action items coming out of the European Neuromuscular Center workshop she attended recently. Kristin Zwickau will share the latest on discussions with the FDA. Come with
- [FSHD University: Annual Drug Development Update](https://www.fshdsociety.org/event/fshd-university-annual-drug-development-update-2/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Annual Drug Development Update Presented by Nicholas Johnson, MD, Virginia Commonwealth University. This is our annual update on therapy development for FSHD. We’ll hear the latest on Fulcrum, Avidity, and Roche’s clinical trials, as
- [12-16 Western PA Virtual Chapter Meeting](https://www.fshdsociety.org/event/12-16-western-pa-virtual-chapter-meeting/) - Western PA Chapter Virtual Meeting Monday, December 16, 2024 7:00-8:30pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to celebrate this year's accomplishments and to start discussing our plans for 2025! Please RSVP in order to receive the Zoom link.
- [Bay Area Chapter Hybrid Meeting](https://www.fshdsociety.org/event/1-12-25-bay-area-chapter-meeting/) - Bay Area Chapter Hybrid Meeting (In-Person and Virtual) Sunday, January 12, 2025 | 1:00-4:00pm PT Hoover Pavilion at Stanford University - in Hoover 208 211 Quarry Rd., Palo Alto, CA 94304 RSVP: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk We'd like to invite you to our San Francisco Bay Area Chapter 2025 Kickoff Meeting on January 12, 2025. We will meet
- [CarePartner Hour - Cancelled](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2-2/) - CANCELLED FOR CHRISTMAS EVE 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care
- [Feeling Fit with FSHD - An interview with Frank Hanley](https://www.fshdsociety.org/event/feeling-fit-with-fshd-15/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We'll wrap up the year with June Kinoshita, senior director of research & education for the FSHD Society, interviewing Frank Hanley, one of the moderators and frequent host of Feeling Fit with
- [Everything Early Onset - Tips to survive the holidays](https://www.fshdsociety.org/event/everything-early-onset-3-2/) - NEW DATE AND TIME: Second Monday of the month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT This month, we will share holiday stories - what you enjoy, what stresses you out - and share ideas for getting through it all. The Everything Early Onset group hopes to
- [2024 FSHD Straight Talk Thanksgiving Special](https://www.fshdsociety.org/event/2024-fshd-straight-talk-thanksgivng-special/) - It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and more.
- [Wellness Hour Holiday Party!](https://www.fshdsociety.org/event/38670-11/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Dress up in holiday finery or goofiness, make yourself a favorite libation, and join us for some jolly ice-breaking! Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month,
- [12/11/24 NYC/NJ-Area Virtual Chapter Meeting](https://www.fshdsociety.org/event/12-11-24-nycnj-chapter-meeting/) - Greater NYC/NJ-area Chapter Virtual Meeting - Wednesday December 11th, 6pm ET Dear NYC & NJ area FSHD Friends, Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, December 11th, at 6pm ET! Let's catch up with one another, get updates from our Summer events, and exciting updates from the FSHD
- [Women On Wellness - Color your world](https://www.fshdsociety.org/event/women-on-wellness-3-12/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Jane Nemke will provide a presentation on Exploring the Impact of Color on Human Perception and Emotion. A long time member of our community, Jane is an accredited International Association Color Consultant. She
- [St. Louis Chapter Holiday Gathering](https://www.fshdsociety.org/event/st-louis-chapter-holiday-gathering-2024/) - St. Louis Chapter Holiday Gathering Saturday, December 7th, 2:00-4:00pm CT 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5 Join us for a special holiday gathering to celebrate the wonderful work our chapter has done this year and the opportunity to connect with one another. Refreshments and food will be provided. Family
- [Feeling Fit with FSHD - Breathe, stretch, and flex](https://www.fshdsociety.org/event/feeling-fit-with-fshd-14/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In this “Feeling Fit” session, Frank Hanley will present the second half of the “Breathe, Stretch and Flex” exercises. He will review the exercises presented in the first session (breathing, neck, shoulders,
- [2024 North Texas Virtual Chapter Meetings](https://www.fshdsociety.org/event/2024-nortex-virtual-meetings-2/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to
- [Young Adults - Relationships](https://www.fshdsociety.org/event/young-professionals/2024-11-18/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT How do you navigate an intimate relationship when you have a condition like FSHD? How do you even get started? What do you put on a dating app? How do you face the fear of rejection? When do you break
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback-2/2024-11-12/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [Feeling Fit with FSHD - Cancelled](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2/2024-11-28/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This meeting has been cancelled because it falls on U.S. Thanksgiving Day. For people living with FSHD who are interested in exercise and fitness, Feeling Fit with FSHD meets on the 2nd
- [Women On Wellness - Moving to a new environment Part 2](https://www.fshdsociety.org/event/women-on-wellness-3-11/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT There was so much to discuss in last month's WOW meeting about the challenges of moving to a new place that we decided to continue to conversation this month. Adjusting to a new environment, including
- [Everything Early Onset - Hang out with cool people!](https://www.fshdsociety.org/event/everything-early-onset/) - First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Would you rather sit alone and bored on your Friday night, or come hang out with some other cool people with Early Onset FSHD? Come join us at Everything Early Onset for a social night
- [New England FSHD 360](https://www.fshdsociety.org/event/ne-fshd-360/) - Co-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in New England, as well as from biopharmaceutical companies that
- [FSHD University: Anesthesia During Surgery for People with FSHD](https://www.fshdsociety.org/event/anesthesia-considerations-for-fshd/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Anesthesia During Surgery for People with FSHD With Bruna M. Castro de Oliveira, MD. Dr. Castro is a board-certified anesthesiologist and director of the orthopedic anesthesia service at Mass General Hospital. Working with Dr.
- [FSHD University: Exercise & Physical Therapy for FSHD](https://www.fshdsociety.org/event/exercise-physical-therapy-for-fshd/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Exercise and Physical Therapy for FSHD, with Ulrike Uta, MSc, MCSP. Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle
- [Colorado Chapter Meeting (In-Person)](https://www.fshdsociety.org/event/colorado-chapter-meeting-in-person/) - Colorado Chapter Meeting (In-Person) Sunday, November 17, 2024 | 12:00-2:00pm MT, followed by the Broncos game Landsdowne Arms Restaurant 9352 Dorchester St, Highlands Ranch, CO 80129 RSVP: https://go.fshdsociety.org/l/701273/2023-03-30/4327q4 Join the Colorado Chapter for a community-building meeting where we will discuss a recap of the year and socialize with each other. We've slotted 2 hours for
- [10/23 Chicago Chapter Virtual Meeting](https://www.fshdsociety.org/event/10-23-chicago-chapter-virtual-meeting/) - Chicago Chapter Virtual Meeting Wednesday, October 23, 2024 | 4:00-5:00pm CT Join us to discuss chapter updates and start thinking about activities for next year. We will also have the opportunity to connect and support one another.
- [10/23 New England Virtual Chapter Meeting](https://www.fshdsociety.org/event/10-23-new-england-virtual-chapter-meeting/) - New England Chapter Virtual Meeting Wednesday, October 23, 2024 - 7:00pm ET Please join us for our next virtual chapter meeting! We will cover: A recap of our recent Walk & Roll An overview of our FSHD 360 event taking place on November 2nd - June Kinoshita, Senior Director of Research and Education at the
- [CarePartner Hour](https://www.fshdsociety.org/event/10-29-care-partner-hour/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Ontario Chapter Brunch Meeting](https://www.fshdsociety.org/event/ontario-chapter-brunch-meeting/) - Ontario Chapter Brunch Meeting Sunday November 24th, 2024: 11:00am - 1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9) Join our Ontario FSHD friends for a casual brunch meeting! We will gather to enjoy socializing with each other, discuss plans for 2025, and get research and trial updates from the
- [Feeling Fit with FSHD - Breathe, Stretch and Flex](https://www.fshdsociety.org/event/feeling-fit-with-fshd-13/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT UPDATE: This session is cancelled because Frank is stranded in Florida and without power due to Hurricane Milton. We hope he stays safe and look forward to seeing you all in two
- [Pacific Northwest Chapter Winter Education Meeting](https://www.fshdsociety.org/event/11-2-pnw-education-meeting/) - Pacific Northwest Chapter Winter Education Meeting November 2, 2024, Noon to 2pm Topic: Strength Training for Rehabilitation and Maintenance in FSHD. Our guest speaker will be Alex Walker of Walker Weightlifting. Together with a few of his FSHD clients Alex will share: - insights into the benefits of strength training for rehabilitation and maintenance in
- [Feeling Fit with FSHD - Breathe, Stretch and Flex Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-11/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In this “Feeling Fit” session, Frank Hanley will present the second half of the “Breathe, Stretch and Flex” exercises. He will review the exercises presented in the first session (breathing, neck, shoulders,
- [Parents' Roundtable - Open chat](https://www.fshdsociety.org/event/early-onset-parent-roundtable-9/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month we'll have an open conversation on whatever is on you mind. Many of you may be assessing your child's situation at school or starting college, so that could be a timely subject. Join us for our monthly Parents'
- [Kansas City FSHD 360](https://www.fshdsociety.org/event/kansas-fshd-360/) - 9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland of the University of Kansas Medical Center and FSHD CTRN. This is a historic time in FSHD, with new treatments on the horizon. Do you
- [Young Adults: Talking about careers](https://www.fshdsociety.org/event/young-professionals-22/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll be talking about how to think strategically about your career when you are likely to lose muscle strength and become physically disabled. What skills are good to have? What kind of education and training opportunities are there?
- [Western PA Chapter Virtual Meeting](https://www.fshdsociety.org/event/western-pa-chapter-virtual-meeting/) - Western PA Chapter Virtual Meeting Tuesday, October 8, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to talk about the disappointing news that Fulcrum has halted development of losmapimod, the first drug to reach a Phase 3 clinical trial in FSHD. We’ll also discuss our upcoming Drum and Roll to Cure FSHD! Please
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2-2/2024-10-22/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Alberta Chapter Virtual Meeting](https://www.fshdsociety.org/event/alberta-chapter-virtual-meeting/) - Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still
- [Wellness Hour - Dental health](https://www.fshdsociety.org/event/38670-10/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we welcome Drs. Bryan Bowman and Daniel Rexin. Dental health is important for everyone, but people with FSHD may have special challenges. Weak cheek and mouth muscles can affect bite, tooth alignment, and oral health. Flossing and brushing
- [Everything Early Onset - Life Hacks](https://www.fshdsociety.org/event/everything-early-onset-2/) - First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or
- [Women On Wellness: Adjusting to a new environment](https://www.fshdsociety.org/event/women-on-wellness-3-10/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal
- [Virtual Screening: Good Bad Things](https://www.fshdsociety.org/event/virtual-good-bad-things/) - Virtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on Friday, September 20 through 11:59pm PST on Sunday, September 22. Streaming access costs $19.99; you will have 72 hours to watch the film. Help spread
- [2024 Mid-Atlantic Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-midatlantic-walk-roll/) - 2024 Mid-Atlantic Walk & Roll to Cure FSHD Saturday, September 21, 2024, Registration opens at 10:30am Alpha Ridge Park, Marriotsville, MD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [Virginia Chapter Monthly Virtual Meeting](https://www.fshdsociety.org/event/va-9-24-24/) - Virginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates and adventures, AND talking about our upcoming Walk & Roll to Cure FSHD on October 12th! Please RSVP using the button below to receive the
- [2024 Kansas City Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-kansas-city-walk-roll-to-cure-fshd/) - 2024 Kansas City Walk & Roll to Cure FSHD Saturday, September 14, 2024 Check-in begins at 10:00am, walk begins at 11:00am Location: Shawnee Mission Park, Shelter 5 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free
- [Greater Philadelphia Chapter Meeting](https://www.fshdsociety.org/event/10-5-24-philly-chapter-meeting/) - Greater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this meeting with Julie Brown, PT, DPT, NCS, ATP/SMS, who has worked with multiple FSHD patients and can offer guidance for individuals at different stages of
- [New England Virtual Chapter Meeting](https://www.fshdsociety.org/event/new-england-virtual-chapter-meeting/) - New England Virtual Chapter Meeting Thursday, September 12, 2024 at 7:00 PM Meeting Agenda: Walk Leader, Lexi Pappas, will briefly talk about the Walk & Roll taking place on 9/22 Regional Director, Jenny Gast, will give an update on the 360 Event taking place on 11/2 Opportunity to connect and network with each other RSVP
- [2024 StL Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-stl-walk-roll-to-cure-fshd/) - 2024 StL Walk & Roll to Cure FSHD Saturday, September 14, 2024 Memorial Park * Pavillion 1, 8600 Strassner Dr, Brentwood, MO 63144 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback-2-5/) - Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support,
- [FSHD University: Insurance Coverage for Costly Rare-Disease Treatments](https://www.fshdsociety.org/event/insurance-coverage-for-costly-rare-disease-treatments/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give
- [Feeling Fit with FSHD - Shaking Qigong with Trish](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-10/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join Trish Kean for a session of Shaking Qigong. Shaking helps us to open up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body.
- [Parents' Roundtable - Fitness training with Mitch Wade](https://www.fshdsociety.org/event/early-onset-parent-roundtable-8/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse
- [Western PA Chapter Drum & Roll Prep Virtual Meeting](https://www.fshdsociety.org/event/western-pa-chapter-drum-roll-prep-virtual-meeting/) - Western PA Chapter Drum & Roll Prep Virtual Meeting Thursday, August 29, 2024 7:00-8:30pm ET RSVP here: go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting for a discussion on how we can make the 2024 Drum and Roll our best one yet! Learn how to navigate the Drum & Roll website and use it to up your fundraising
- [Women On Wellness - Navigating friendships](https://www.fshdsociety.org/event/women-on-wellness-3-9/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will talk about the challenges of making and keeping friends, in light of our many mobility challenges and potential location changes AND how to cope with the jealousy that may creep up
- [Wellness Hour - Health care disparities](https://www.fshdsociety.org/event/38670-9/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our speaker this month addresses an important topic that affects many in our community. Elizabeth Pendo is the Kellye Y. Testy Professor of Law and Senior Associate Dean for Academic Affairs at the University of Washington School of Law, and
- [Feeling Fit with FSHD: In-home PT and OT](https://www.fshdsociety.org/event/feeling-fit-with-fshd-11/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Physical therapy and exercise are important if you have FSHD, but making regular trips to a physical therapist can be challenging if you have mobility or transportation challenges. Join us to learn
- [2024 East Tennessee Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-east-tennessee-walk-roll-to-cure-fshd/) - 2024 East Tennessee Walk & Roll to Cure FSHD Details TBD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [Southeast Multi-Chapter Virtual Meeting](https://www.fshdsociety.org/event/southeast-multi-chapter-virtual-meeting/) - Southeast Multi-Chapter Virtual Meeting Tuesday, August 27, 2024 at 6:00pm ET Amy Halseth and Erika Escartin from Avidity Biosciences will give a short presentation on the recent data from FORTITUDE, followed by an open Q&A session about participating in clinical trials, the drug development process, the potential new drugs that are in the pipeline, or
- [Young Adults - Art & Journaling](https://www.fshdsociety.org/event/young-professionals-21/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art, poetry, and prose. She led
- [Feeling Fit with FSHD - Fitness training](https://www.fshdsociety.org/event/feeling-fit-with-fshd-12/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Chris Haven, from the Pacific Northwest chapter, will share her experiences working out with Alex Walker, a personal trainer and strength coach. She will share a video and discuss her FSHD and
- [2024 Michigan Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-michigan-walk-roll-to-cure-fshd/) - 2024 Michigan Walk & Roll to Cure FSHD Sunday, September 22, 2024 Registration starts at 9:00am and the Walk starts at 9:30am Mulligan's Hollow Lodge - 600 Y Drive, Grand Haven, MI 49417 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who
- [Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox](https://www.fshdsociety.org/event/virginia-tides-redsox/) - Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox Saturday, August 24, 2024 at 6:00pm Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Please join us on August 24 at Harbor Ballpark! We have reservations at 6:00pm for the Norfolk Tides vs Worcester Red Sox. There are 5 ADA seats and 15 other
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-6/) - In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback-2-4/) - Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenbeck drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half.
- [Virginia Chapter, Monthly Virtual Chapter Meeting](https://www.fshdsociety.org/event/va-chapter-meeting-monthly-2/) - 6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we
- [Feeling Fit with FSHD: Physical therapy vs fitness training](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-9/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Physical therapy and fitness training can both be beneficial to individuals with FSHD. Do you know the difference? When is PT called for? When does fitness training make sense? Join us to
- [St. Louis Chapter In-Person Support Meeting](https://www.fshdsociety.org/event/st-louis-chapter-in-person-support-meeting/) - St. Louis Chapter In-Person Support Meeting Tuesday, August 20th, 2024, 7:00-8:00pm CT Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 We invite all of our St. Louis Chapter members to join us on Tuesday, August 20th for our upcoming Chapter Meeting at Webster Groves Public Library. During this time, our
- [Atlanta Chapter Virtual Meeting: Walk & Roll Prep](https://www.fshdsociety.org/event/atlanta-walk-roll-prep/) - Atlanta Chapter Virtual Meeting: Walk & Roll Prep Monday, August 19th, 5:30-6:30pm ET Join our virtual meeting for a group brainstorm and discussion on how we can make the 2024 Walk and Roll our best one yet! Please fill out the RSVP form at the link above to receive the Zoom link for this virtual
- [Good Bad Things Theatrical Premiere](https://www.fshdsociety.org/event/good-bad-things-theatrical-premiere/) - Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, will be screened in 50 AMC Theaters across the US on August 15th! "Good Bad Things" brings authentic disability representation to the big screen, challenging
- [Parents' Roundtable - Nutrition for FSHD](https://www.fshdsociety.org/event/early-onset-parent-roundtable-7/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Using real FSHD patient food records, we will explore the journey to better nutrition for FSHD and discuss the dietary choices that we make each day. Selina Lai, our Pacific Northwest Chapter director, has a registered dietitian credential and has
- [Parents' Roundtable](https://www.fshdsociety.org/event/early-onset-parent-roundtable/2024-11-19/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents' Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and to advocate
- [Los Angeles Virtual Chapter Meeting](https://www.fshdsociety.org/event/los-angeles-virtual-chapter-meeting/) - Los Angeles Virtual Chapter Meeting Wednesday, August 7th | 6:00 - 7:00 pm PT Join us on Wednesday, August 7th from 6:00 pm - 7:00 pm for our upcoming virtual chapter meeting. We are excited to have our chapter come together after a brief hiatus and to share exciting updates about where we are as
- [Western PA Chapter 3rd Annual Family Picnic](https://www.fshdsociety.org/event/pa-3rd-family-picnic/) - Western PA Chapter 3rd Annual Family Picnic Saturday, August 3rd, 12:00pm ET Location: Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Please join us for this fun, in-person event where we can be in community and enjoy time together. The picnic will be held at Adams Township Community Park, 698 Valencia Rd., Mars,
- [Wellness Hour - Art and journaling](https://www.fshdsociety.org/event/38670-8/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art, poetry, and prose. She led
- [Young Adults - Trial readiness](https://www.fshdsociety.org/event/young-professionals-20/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We're excited to learn that Avidity will begin recruiting for Cohort C of its clinical trial this fall, and Cohort D sometime in early 2025. So it's timely to learn about how to become "trial ready" at the individual level.
- [Women On Wellness - Summer Smørgasbord](https://www.fshdsociety.org/event/women-on-wellness-3-8/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We'll be discussing a variety of topics that have been raised recently: The types of providers we use to take care of our unique needs Managing fatigue How to maintain a sense of humor when
- [2024 Northeast Florida Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-northeast-florida-walk-roll-to-cure-fshd/) - 2024 Northeast Florida Walk & Roll to Cure FSHD Saturday, September 7, 2024 Check-in begins at 8:30am, walk begins at 9:00am Jacksonville Zoo & Gardens Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page
- [Central Texas Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/central-texas-walk-roll-to-cure-fshd/) - Central Texas Walk & Roll to Cure FSHD Saturday, October 5, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your
- [2024 North Texas Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-north-texas-walk-roll-to-cure-fshd/) - 2024 North Texas Walk & Roll to Cure FSHD Saturday, October 5, 024 Check-in opens at 1:00 PM, Walk & Roll begins promptly at 2:00 PM Location: Frisco Commons Park , 8000 McKinney Rd, Frisco, TX 75034 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to
- [2024 Los Angeles Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-los-angeles-walk-roll-to-cure-fshd/) - 2024 Los Angeles Walk & Roll to Cure FSHD Sunday, October 6, 2024 Location: Clover Park, 2600 Ocean Park Blvd, Santa Monica, CA 90405 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and
- [2024 Virginia Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-virginia-walk-roll-to-cure-fshd/) - 2024 Virginia Walk & Roll to Cure FSHD Saturday, October 12, 2024, 10:00am Norfolk Zoo, Norfolk, VA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From
- [2024 Atlanta Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-atlanta-walk-roll-to-cure-fshd/) - 2024 Atlanta Walk & Roll to Cure FSHD Sunday, October 20, 2024, 10:00am at Chattahoochee Nature Center Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From
- [Bay Area Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/bay-area-walk-roll-to-cure-fshd/) - Bay Area Walk & Roll to Cure FSHD Sunday, September 15, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your
- [2024 San Diego Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-san-diego-walk-roll-to-cure-fshd/) - 2024 San Diego Walk & Roll to Cure FSHD Saturday, September 21, 2024, 8:30am Harbor Island Park, San Diego, CA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art
- [2024 North Carolina Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-north-carolina-walk-roll-to-cure-fshd/) - 2024 North Carolina Walk & Roll to Cure FSHD Saturday, September 21, 2024 Registration starts at 10:00am and the Walk starts at 10:30am Goat Island Park - Large Shelter, 141 8th Ave, Cramerton, NC 28032 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you.
- [2024 New England Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-new-enland-walk-roll-to-cure-fshd/) - 2024 New England Walk & Roll to Cure FSHD Sunday, September 22, 2024 Check-in at 10:00am, Walk starts at 10:30am Larz Anderson Park, 25 Newton St, Brookline, MA 02445 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given
- [2024 Minnesota Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-minnesota-walk-roll-to-cure-fshd/) - 2024 Minnesota Walk & Roll to Cure FSHD Sunday, September 22, 2024 Location: Normandale Lake Bandshell, 5901 West 84th Street, Bloomington, MN Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to
- [2024 Chicagoland Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-chicagoland-walk-roll-to-cure-fshd/) - 2024 Chicagoland Walk & Roll to Cure FSHD Saturday, September 28, 2024 Registration opens at 9:00am and the event starts 10:00am Location: Robert Soule Amphitheater, Citizens Park, 511 Lake Zurich Rd, Barrington, IL 60010 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone
- [2024 Long Island Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-long-island-walk-roll-to-cure-fshd/) - 2024 Long Island Walk & Roll to Cure FSHD Saturday, September 28, 2024 Eisenhower Park, 1899 Park Blvd., East Meadow NY 11554 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to
- [2024 South Carolina Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-south-carolina-walk-roll-to-cure-fshd/) - 2024 South Carolina Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social
- [2024 New Jersey Shore Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-new-jersey-shore-walk-roll-to-cure-fshd/) - 2024 New Jersey Shore Walk & Roll to Cure FSHD Sunday, September 29, 2024 At the end of the Seaside Boardwalk (Ocean Terrace & Hiering Avenue), Seaside Heights, NJ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given
- [2024 Alberta Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-alberta-walk-roll-to-cure-fshd/) - 2024 Alberta Walk & Roll to Cure FSHD Saturday, September 7, 2024 9:00am at the Riverwalk Plaza, Calgary AB Join us for the second annual Alberta Walk & Roll to Cure FSHD. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers
- [2024 British Columbia Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-british-columbia-walk-roll-to-cure-fshd/) - 2024 British Columbia Walk & Roll to Cure FSHD Date and Time TBD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share
- [2024 Pacific Northwest Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-pacific-northwest-walk-roll-to-cure-fshd/) - 2024 Pacific Northwest Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Owen Beach Pavilion, Tacoma, WA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising
- [2024 Ontario Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-ontario-walk-roll-to-cure-fshd/) - 2024 Ontario Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Lake Aquitaine Park, Mississauga, ON Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.
- [2024 Utah/Intermountain Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-intermountain-walk-roll/) - 2024 Utah/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 3:00-5:00pm Canyon Rim Park - East Pavilion, Millcreek, Utah Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [2024 Columbus Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-columbus-walk-roll-to-cure-fshd/) - 2024 Columbus Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am at Coffmann Park Pavilion Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From
- [2024 Colorado Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-colorado-walk-roll-to-cure-fshd/) - 2024 Colorado Walk & Roll to Cure FSHD Sunday, September 8, 2024 Check In begins at 8:00am and the Walk begins promptly at 9:00am Phillip S. Miller Park - Amphitheater, Castle Rock, CO Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who
- [2024 Sacramento Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-sacramento-walk-roll-to-cure-fshd/) - 2024 Sacramento Walk & Roll to Cure FSHD Saturday, September 7, 2024 Registration opens at 9:00am, the Walk starts at 10:00am California State Capitol: 1315 10th St, Sacramento, CA 95814 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be
- [Western PA Virtual Chapter Meeting](https://www.fshdsociety.org/event/western-pa-virtual-chapter-meeting/) - 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Western PA Virtual Chapter Meeting Wednesday, July 17th, 7:00pm ET We will gather for conversation and to provide each other support. We will also discuss recent FSHD Society updates as well as details for our August picnic. Please RSVP to ensure you receive the
- [FSHD University: ReSolve – What We Have Learned](https://www.fshdsociety.org/event/fshd-university-resolve-what-we-have-learned/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT ReSolve – What We Have Learned Presented by Kate Eichinger, PT, PhD, University of Rochester. ReSolve is one of the largest natural history studies of FSHD completed to date. Many of our FSHD community
- [FSHD University: Good Bad Things](https://www.fshdsociety.org/event/fshd-university-good-bad-things/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Good Bad Things Actor and screenwriter Danny Kurtzman and filmmaker Shane Stanger will discuss their pathbreaking feature film, Good Bad Things. The film tells the captivating story of Danny, an entrepreneur with FSHD who defies
- [FSHD University: BetterLife FSHD with Amanda Hill](https://www.fshdsociety.org/event/fshd-university-betterlife-fshd-with-amanda-hill/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT BetterLife FSHD We are thrilled to announce the premiere of BetterLife FSHD, an innovative health platform dedicated to helping you take control of your well-being and advance FSHD research. With BetterLife FSHD, you can
- [FSHD University - Better Nutrition for FSHD](https://www.fshdsociety.org/event/fshd-university-better-nutrition-for-fshd/) - 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT The foods you eat impact your disease and can support improved muscle function in combination with supplementation and exercise. Using real FSHD patient food records, we will explore the journey to better nutrition for
- [2024 Drum & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-drum-roll-to-cure-fshd/) - 2024 Drum & Roll to Cure FSHD Sunday, November 3, 2024, 1:00pm National Aviary - The Garden Room - Pittsburgh, PA In this unique and amazing event, FSHD warriors will come together to raise funds toward development of treatments for FSH Muscular Dystrophy! Yamoussa Camara is the Director of African Music & Dance Ensemble at
- [2024 Idaho/Intermountain Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-idaho-intermountain-walk-roll-to-cure-fshd/) - 2024 Idaho/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am Canyon Rim Park – East Pavilion, Millcreek, Utah Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [San Diego Chapter Ice Cream Social](https://www.fshdsociety.org/event/san-diego-chapter-ice-cream-social/) - 6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT San Diego Chapter Ice Cream Social Sponsored by Kate Therapeutics Sunday, August 25, 2024 from 3:30 - 5:30pm PT Hilltop Community Park, 9711 Oviedo Way, 92129 Join us for some ice cream to celebrate and get excited our upcoming Walk & Roll in September.
- [Team Captain Rally & Social Hour](https://www.fshdsociety.org/event/team-captain-rally-social-hour/) - 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we celebrate our amazing Team Captains and Walk Leaders for all of the incredible work that they do. We’ll provide a few tips and tricks for
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback-2-3/) - In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation
- [Feeling Fit with FSHD - Breathwork Part 3](https://www.fshdsociety.org/event/feeling-fit-with-fshd-10/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In PART 3 of the “Feeling Fit” Breathing and Breathwork sessions, Frank Hanley will review and discuss exercises presented in the first two workshops, and demonstrate additional breathwork exercises to improve breathing
- [Feeling Fit with FSHD - Aquatic exercise](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-8/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Our featured presenter, Andrea Jaworek, PT, is passionate about aquatic exercise for people with neuromuscular conditions. Andrea will be presenting on aquatic exercise, discussing the benefits and latest research, the aquatic precautions/contraindications,
- [Sacramento Chapter Meeting](https://www.fshdsociety.org/event/sacramento-chapter-meeting-4/) - 9:00-10:00pm ET | 8:00-9:00pm CT | 7:00-8:00pm MT | 6:00-7:00pm PT Sacramento Virtual Chapter Meeting Wednesday, July 10, 2024 6:00-7:00pm PT on Zoom Join the Sacramento Chapter for our upcoming virtual meeting. We will have a guest presenter, Christine Arseneault, who will share ways to stay active outdoors with FSHD. Christine is a resident of
- [Dakotas Chapter Meeting](https://www.fshdsociety.org/event/dakotas-chapter-meeting-2/) - 12:00-2:00pm ET | 11:00am-1:00pm CT | 10:00am-12:00pm MT | 9:00am-11:00am PT Dakotas Chapter Meeting Saturday, August 24, 2024 Location: TBD Restaurant Join the Dakotas Chapter for a special community lunch event this August. During this time, we will share updates from the 2024 Patient Connect Conference, get people excited for the 2024 Minnesota Walk &
- [Wellness Hour - Adapting your home](https://www.fshdsociety.org/event/38670-7/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Wellness hour features In Home Preferred, an innovative company run and managed by two Occupational Therapists who are Certified Aging in Place Specialists (CAPS). Hailey Conway, OTR,OTD,MS, CAPS and Sam Koelmel, OTR, OTD, MS, CAPS are the owners
- [Chicago Chapter Virtual Meeting](https://www.fshdsociety.org/event/chicago-chapter-virtual-meeting/) - 7:00-8:00pm ET | 6:00-7:00pm CT | 5:00-6:00pm MT | 4:00-5:00pm PT Chicago Chapter Virtual Meeting Thursday, July 11, 2024 via Zoom Join us for our upcoming virtual Chicago Chapter Meeting where we have some exciting updates to share. This will include updates from the Connect Conference that took place in June, as well as the
- [The Muscle to Keep Life Moving](https://www.fshdsociety.org/event/the-muscle-to-keep-life-moving-2024/) - The Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner with Dyne Therapeutics to present the 2024 The Muscle to Keep Life Moving™ fundraising event to provide care and support, including, critically important mobility equipment,
- [Early-Onset Parent Roundtable - Connect recap](https://www.fshdsociety.org/event/early-onset-parent-roundtable-6/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric and early-onset FSHD. Ally Roets and Debbie Eggleston will share what happened, what was learned, and discuss how our community will follow up. Join us
- [Young Adults - Building community](https://www.fshdsociety.org/event/young-professionals-19/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month, we invite everyone in the Young Adults community to join a conversation about how we build our community. How can this group support you with issues that are priorities in your life? What can we all work on
- [Women On Wellness - Vacation obstacles](https://www.fshdsociety.org/event/women-on-wellness-3-7/) - First Wednesday of every month* 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT *Note we have changed the date to July 10 due to the July 4 holiday. Our July topic will be: How to manage when our assistive devices cannot get us into a building, how to
- [Ontario World FSHD Day Event](https://www.fshdsociety.org/event/ontario-world-fshd-day-event/) - 7:00m Hello Ontario Friends! Join us virtually to celebrate World FSHD Day on June 20th at 7:00pm! We want to celebrate all the amazing things that are happening in the FSHD Community on this International Day of Awareness for FSHD WHAT: World FSHD Day, June 20th - Virtual Chapter meeting. RSVP HERE to receive the
- [New England Chapter In-Person Social Gathering](https://www.fshdsociety.org/event/new-england-chapter-in-person-social-gathering/) - 12-2pm ET | 11a-1pm CT | 10a-12pm MT | 9-11am PT New England Chapter In-Person Social Gathering Friday, July 19, 2024 from 12:00-2:00pm ET at On the Border (Rocky Hill) Address: 1519 Silas Deane Highway, Rocky Hill, CT 06067 Please join us for this fun, community-building event to share adventures and stories! We will enjoy
- [BC Chapter World FSHD Day Celebration Event](https://www.fshdsociety.org/event/bc-chapter-world-fshd-day-celebration-event/) - 8:30pm ET | 7:30pm CT | 6:30pm MT | 5:30pm PT BC Chapter - World FSHD Day Celebration Event Thursday, June 20th from 5:30-8:00pm at Rogue Kitchen & Wetbar Gastown, Uber Lounge, 601 W Cordova Street, Vancouver, BC V6B 1G1 This World FSHD Day we're hosting an upscale event, thanks to our sponsor Solve FSHD.
- [31st Annual International Research Congress on FSHD](https://www.fshdsociety.org/event/31st-annual-international-research-congress-on-fshd/) - Virtual registration open until June 9th The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities.
- [2024 FSHD Connect Conference](https://www.fshdsociety.org/event/2024-patient-connect-conference/) - CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD Connect is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for
- [Alberta Chapter - World FSHD Day Celebration](https://www.fshdsociety.org/event/2024-alberta-chapter-world-fshd-celebration/) - 5:30pm MT (4:30pm PT | 7:30pm ET | 6:30pm CT) Alberta Chapter - World FSHD Day Celebration Hello Alberta Chapter Friends!! WHAT: On World FSHD Day, June 20, we are hosting a get-together with our Alberta Chapter members to celebrate the successes we have seen over the last year, and to raise awareness for the
- [Virginia Chapter Celebration of World FSHD Day](https://www.fshdsociety.org/event/virginia-chapter-celebration-of-world-fshd-day/) - 2:00pm ET | 1:00pm CT | 12:00pm MT | 11:00am PT Virginia Chapter Celebration of World FSHD Day Saturday, June 22, 2024 from 2:00 pm - 4:00 pm ET at Billsburg Brewery, 2054 Jamestown Rd, Williamsburg, VA 23185 Join us for a relaxing social gathering on June 22nd to celebrate World FSHD Day! Please RSVP
- [Atlanta Chapter World FSHD Day Watch Party](https://www.fshdsociety.org/event/atlanta-chapter-world-fshd-day-watch-party-2/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT Atlanta Chapter Watch Party for World FSHD Day Thursday, June 20, 2024 - 8:00pm El Azteca Perimeter - 6115 Peachtree Dunwoody Rd., Ste. 100, Sandy Springs, GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in
- [FSHD University - FORTITUDE Trial interim results](https://www.fshdsociety.org/event/fshd-university-fortitude-trial-interim-results/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the FORTITUDETM study on FSHD University. The Avidity team, joined by Dr. Jeffrey Statland, University of Kansas Medical Center and FORTITUDE trial investigator, will present in-progress
- [Summer Park Party - Michigan Chapter](https://www.fshdsociety.org/event/summer-park-party-michigan-chapter/) - 11AM - 3PM ET Summer Park Party - Michigan Chapter Please join us for an in-person social gathering on June 23rd. We are planning a summer park party from 11am - 3pm ET at Tunnel Park (66 Lakeshore Ave, Holland, MI 49424 - North Picnic Pavilion). Hot dogs, chips and water will be provided, along
- [Michigan Chapter Virtual Meeting](https://www.fshdsociety.org/event/michigan-chapter-virtual-meeting/) - 7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm ET. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via the below button
- [Early-Onset Parent Roundtable - Cancelled](https://www.fshdsociety.org/event/early-onset-parent-roundtable-5/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We are cancelling this month's meeting because we will be very busy with FSHD Connect. Join us next month for Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain
- [Texas Commuity Social Hour](https://www.fshdsociety.org/event/texas-commuity-social-hour/) - 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up with old friends or make some new. It's been a little over a month since we gathered as a community together for the Texas FSHD
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-chapter-meeting-3/) - Bay Area Chapter Meeting: Connect Watch Party Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and Sue Drescher, will be hosting a morning watch party of the FSHD Society Patient Connect Conference that will be taking place that same morning in
- [Feeling Fit with FSHD - Breathwork Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-7/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In PART 2 of the June “Feeling Fit” sessions, Frank Hanley will review and discuss exercises presented in PART 1 and demonstrate additional breathwork exercises to promote nose breathing and help strengthen
- [Feeling Fit with FSHD - Breathwork Part 1](https://www.fshdsociety.org/event/feeling-fit-with-fshd-9/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Are you a ‘Mouth Breather’? Do you wake up in the morning with a headache? This month, Frank Hanley returns to discuss the effects of ‘mouth breathing’ and how FSHD can cause
- [Early-Onset Parent Roundtable - Heloise Hoffmann](https://www.fshdsociety.org/event/early-onset-parent-roundtable-4/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13, when she
- [FSHD University - Project Mercury](https://www.fshdsociety.org/event/fshd-university-project-mercury-and-patients-access-to-treatments/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they don’t perceive
- [North Carolina Chapter Social Gathering](https://www.fshdsociety.org/event/5-18-24-north-carolina-chapter-social-gathering/) - 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT North Carolina Chapter Social Gathering Please join us for a casual dinner on May 18th at 5pm at Floyd & Blackies. I look forward to meeting all of you in person! Floyd & Blackies: 142 8th Avenue, Cramerton, NC 28032 Please RSVP below so
- [Women On Wellness - A meaningful life after retirement](https://www.fshdsociety.org/event/women-on-wellness-3-6/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's conversation topic is "How to keep a meaningful life in retirement or when you need to stop working." Many of us find fulfillment, identify, and a sense of mattering through our work outside
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback-2-2/) - In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of
- [2024 International Walk & Roll to Cure FSHD](https://www.fshdsociety.org/event/2024-international-walk-roll-to-cure-fshd/) - 2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media
- [Ontario Chapter: World FSHD Day Virtual Meeting](https://www.fshdsociety.org/event/ontario-chapter-world-fshd-day-virtual-meeting/) - Ontario Chapter: World FSHD Day Virtual Meeting Hello Ontario Friends! We hope you can join us virtually to celebrate World FSHD Day on Thursday, June 20th at 7:00pm ET! Together, we can celebrate all the amazing things that are happening in the FSHD Community on this international day of awareness for FSHD. RSVP via the
- [New England Chapter Meeting](https://www.fshdsociety.org/event/may-22-new-england-chapter-meeting/) - 7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May 22nd! We will discuss what's new with the FSHD Society, upcoming events on the calendar, as well as share adventures and stories amongst ourselves. Our
- [May 20: Western PA Virtual Chapter Meeting](https://www.fshdsociety.org/event/may-20-western-pa-virtual-chapter-meeting/) - 7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual chapter meeting. In addition to checking in with everyone, I would like to share my latest experiences at the Abilities Expo and the Day on
- [2024 Falmouth Road Race](https://www.fshdsociety.org/event/2024-falmouth-road-race/) - Sunday, August 18, 2024 2024 Falmouth Road Race The 2024 ASICS Falmouth Road Race promises to be an exciting event celebrating 52 years of running the iconic course along the sea, giving back to the community and promoting running, health and fitness! The race happens at 9:00am on Sunday, August 18. This is our second
- [2024 Triple Bypass Race](https://www.fshdsociety.org/event/2024-triple-bypass-race/) - Saturday, July 13, 2024 The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. George is the founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for the FSHD Society, the global
- [2024 Denver Colfax Marathon](https://www.fshdsociety.org/event/2024-denver-colfax-marathon/) - Saturday, May 18, 2024 Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. REGISTER today and join our Team to fight FSH Muscular Dystrophy. The event starts at Denver’s City Park, on the east side
- [Young Adults - Cancelled](https://www.fshdsociety.org/event/young-professionals-18/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We are cancelling our June meeting because the Young Adults group will be recovering from a busy, exciting several days at the FSHD Connect conference in Denver. We will be back next month! FSHD Young Professionals is a social and
- [Wellness Hour - Adaptive cooking](https://www.fshdsociety.org/event/38670-6/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast. "Having started my interest in food and cooking as a young girl, over the years I have dedicated my free time to recipe development, refining
- [Feeling Fit with FSHD - Nerve mobility and pain](https://www.fshdsociety.org/event/feeling-fit-with-fshd-7/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month we have the pleasure of welcoming Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). We're eager to meet the next generation of PTs who
- [World FSHD Day](https://www.fshdsociety.org/event/world-fshd-day-2024/) - Join us for the annual World FSHD Day to raise awareness of FSHD globally over social media on June 20th! Learn about the orange slice selfie campaign and download our toolkit HERE. We will also be celebrating this day with special FSHD Radio mini-episodes that will be released throughout the day. More details to come!
- [Texas FSHD 360](https://www.fshdsociety.org/event/texas360/) - 9:00 a.m. US Central Time doors open | 10:00-3:00 p.m. US CT conference sessions Save the date!! The FSHD Society, in collaboration with the University of San Antonio Health Science Center, University of Texas Austin Medical School, and University of Texas Southwest Medical School, is hosting our first-ever Texas FSHD 360 conference. Dr. Matthew Wicklund
- [CANCELED April 21, 2024 - Alberta Chapter - Edmonton Brunch Meeting](https://www.fshdsociety.org/event/4-21-24-edmonton-brunch-meeting/) - CANCELEED Due to the lack of RSVPs, we have sadly decided to cancel this event. One of the goals of our Alberta Chapter is to grow our connections and community in the Edmonton Area. We haven’t been successful in doing this with our last two events, and would love your feedback. What would you like
- [Wellness Hour - Making important decisions](https://www.fshdsociety.org/event/38670-5/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Many of us procrastinate when it comes to planning for the future, especially when the future could include illness, disability, having to find caregivers, financial uncertainty, or the prospect of having to turn over control of your affairs and even
- [Women On Wellness - Promoting a positive outlook](https://www.fshdsociety.org/event/women-on-wellness-3-5/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. Staying positive can be challenging while one is dealing with uncertainty and experiencing emotional needs of lifestyle changes. How do we cope with the pain
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/1-31-24-nortex-2/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on Wednesday, April 24th for a virtual chapter meeting North Texas is opening to all Texas community members. During this chapter meeting, we will be joined by guest speaker, Attorney Brandon A. Rotbart, P.A. who will discuss
- [2024 Idaho Talent Fest](https://www.fshdsociety.org/event/2024-idaho-talent-fest/) - 8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research into cures for FSHD. Don't miss the Idaho Talent Fest, featuring a variety of performers. Enjoy a night of entertainment and vote for your favorite
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-4/) - In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with
- [Pacific Northwest Day at the Ball Park!](https://www.fshdsociety.org/event/6-9-24-pnw-ball-park/) - 4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405 Details: Greetings my PNW FSHD Chapter friends! SUMMER is just around the corner and that means time
- [May 4th Sacramento Chapter Meeting](https://www.fshdsociety.org/event/5-4-24-sacramento-chapter-meeting/) - 3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT Sacramento Chapter Meeting Saturday, May 4, 2024 from 12:00 pm - 2:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Join us for yummy food and good conversation at Mimi's Cafe for lunch as we officially welcome our new
- [Early-Onset Parent Roundtable - Transitioning to adulthood](https://www.fshdsociety.org/event/early-onset-parent-roundtable-3/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT When a child has a progressive, disabling condition like FSHD, the transition to adulthood and independent life can be challenge, as much for parents as for the new adult. Sherry Aiken guides many youths (and their families) through this process.
- [May 11 Dakotas Chapter Meeting](https://www.fshdsociety.org/event/may-11-dakotas-chapter-meeting/) - 11:30am-12:30pm | 10:30-11:30am CT |9:30-10:30am MT | 8:30-9:30am PT Dakotas Chapter Meeting, Saturday, May 11, 2024 10:30 am - 11:30 am CT WHERE: 3247 47th St S, Fargo, ND 58104 DETAILS: Join us for a Dakotas Chapter Meeting where we will have the opportunity to connect and share updates with the community. This meeting will
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-3/) - In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions, and a way to keep busy in retirement, through board service and Chapter Program leadership. If you've heard of Magic for a Cure or participated
- [Ontario Chapter Brunch Meeting](https://www.fshdsociety.org/event/4-27-24-ontario-chapter-meeting/) - 11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Ontario Chapter Brunch Meeting Saturday April 27th, 11:00am-1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9). Two of our members, Scott and Ali, will be sharing their experience with participating in the Fulcrum and Avidity interventional FSHD clinical trials.
- [FSHD University - Family communication](https://www.fshdsociety.org/event/fshd-university-family-communication/) - With Jennifer Egert, PhD, and patients and family members 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT This month's webinar will be a roundtable discussion on the challenges of communicating with those close to you about FSHD, how it is impacting you, and
- [Finding reliable health information on the Internet, with Tina Griffin](https://www.fshdsociety.org/event/finding-reliable-health-information-on-the-internet-with-tina-griffin/) - Finding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT Most of us turn to “Dr. Google” to find medical and health information, but how do we know the information is trustworthy? When our health
- [Early-Onset Parent Roundtable - Planning for FSHD Connect](https://www.fshdsociety.org/event/early-onset-parent-roundtable-2/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT As we plan the 2024 FSHD Connect conference--the largest gathering for patients, families, clinicians, and researchers--we want to provide activities and spaces for kids and teens. Join us to learn more about FSHD Connect and help us brainstorm fun and
- [Feeling Fit with FSHD - Nerve pain and mobility, part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-5/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This is part two of this month's series with Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). Arielle will be discussing nerve mobility and pain. Postural impairments
- [Feeling Fit with FSHD - Chair Yoga](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-6/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Donna Russo will lead today's session on chair yoga. Donna is a dancer, actress, and activist. She has performed with wheelchair dance troupes and made a series of YouTube videos, Donna on
- [Feeling Fit with FSHD - Shaking Qi Gong](https://www.fshdsociety.org/event/feeling-fit-with-fshd-8/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We welcome back Trish Kean, who will lead us through a session of Shaking Qi Gong. Shaking helps us to open up our joints or energy gates and meridians allowing the free
- [North Texas chapter meeting](https://www.fshdsociety.org/event/3-23-24-nortex-lunch/) - 3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT North Texas Chapter Come Together Lunch, Saturday, March 23, 2024 from 2:00 pm - 4:00 pm CT WHERE: Rodeo Goat (3111 Preston Rd, Frisco, TX) DETAILS: We will be hosting an in-person lunch on March 23rd in Frisco, TX. This lunch will be at
- [Feeling Fit with FSHD - Qi Gong with Frank Hanley](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-4/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT As Rita Lynn has had to cancel her yoga session with us, we are happy to welcome Frank Hanley, who will lead us through some Qi Gong exercises. He always comes up
- [April 6, 2024: Chicagoland Chapter Meeting, In-Person](https://www.fshdsociety.org/event/4-6-24-chicagoland-chapter-meeting/) - 2:00-400pm | 1:00-3:00pm CT | 12:00-2:00pm MT | 11:00a-1:00pm Chicago Chapter Meeting, Saturday, April 6, 2024 from 1:00 - 3:00 pm CT WHERE: Northlake Library, 231 N Wolf Rd, Northlake, IL 60164 DETAILS: Join us on Saturday, April 6th at the Northlake Library for a special chapter meeting where we'll introduce our new Chicagoland Chapter
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio/2024-06-25/) - On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-straight-talk-with-tim-hollenback/) - Tuesday, March 12 Tim will be joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit, you know Lonwabo has invaluable insights to share! In this episode, he'll talk about his journey with FSHD, from the struggle for diagnosis to actively managing his symptoms
- [Texas Virtual Happy Hour](https://www.fshdsociety.org/event/3-17-tx-happy-hour/) - 7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where
- [Calgary FSHD 360 conference](https://www.fshdsociety.org/event/university-of-alberta-fshd-360-conference/) - 9:00 a.m. Mountain Time doors open | 10:00-3:00 p.m. MT conference sessions The FSHD Society, in collaboration with FSHD Canada Foundation and the University of Calgary, AB, Canada, is hosting the first-ever Canadian FSHD 360 conference. Dr. Lawrence Korngut and his colleagues will share the latest news on the Canadian clinical trial research network, cutting-edge
- [Women On Wellness - Menopause](https://www.fshdsociety.org/event/women-on-wellness-3-3/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a presentation on menopause and women with FSHD, from Drs. Thornburg and Mitchell Linder, from the University of Rochester Medical Center, Ob-Gyn department. This is our second presentation from Dr. Thornburg. We
- [Feeling Fit with FSHD - Adaptive Yoga with Rita Lynn](https://www.fshdsociety.org/event/feeling-fit-with-fshd-6/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, Rita Lynn will lead sessions on adaptive yoga. Rita will focus on the meditative aspects of yoga during this Zoom session. She also has shared these handouts to guide your
- [New England Chapter - Virtual Meeting](https://www.fshdsociety.org/event/3-12-24-newengland-chapter-meeting/) - 7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for another great virtual chapter meeting! We will discuss current clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right
- [FSHD Radio: Straight Talk with Tim Hollenback](https://www.fshdsociety.org/event/fshd-radio-2/) - Tuesday, February 27th We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with
- [NYC/NJ-area Virtual Chapter Meeting - April 6, 2024](https://www.fshdsociety.org/event/4-6-24-nyc-chapter-meeting/) - 9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT NYC/NJ-area Virtual Chapter Meeting Saturday, April 6th, 2024 at 9am ET ​​ Dear Friends, Please plan to join us for our next virtual meeting, Saturday, April 6th, 2024 at 9am ET. This is the next in our series of regular bi-monthly meetings to provide
- [3/5/24 Michigan Chapter Meeting](https://www.fshdsociety.org/event/3-5-24-michigan-chapter-meeting/) - 7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter - Virtual Meeting Please join us for a virtual chapter meeting on Tuesday, March 5, 2024, from 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via
- [Colorado Chapter Meeting](https://www.fshdsociety.org/event/3-23-24-co-chapter-meeting/) - 3:00pm MT | 2:00 PT | 5:00pm ET | 4:00pm CT | Hello Friends! I hope you can join us for our first meeting of 2024! WHEN: Saturday March 23rd, 2024 - 3pm MT WHERE: Lansdowne Arms, Library Room - 9352 Dorchester St., Highlands Ranch, CO 80129 WHAT: Special Guest Speaker will be Caitlin Prechel
- [Wellness Hour - Rick's tummy tuck](https://www.fshdsociety.org/event/38670-4/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles (the cause of the "pregnant belly" silhouette). We're being tongue in cheek about this being a "tummy tuck," as it's not a cosmetic procedure but
- [Women On Wellness - When your care plan doesn't work anymore](https://www.fshdsociety.org/event/women-on-wellness-3-4/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will continue our discussion on what to do when your current care plan isn't working anymore. As always, expect a wealth of practical tips, sympathy, and the supportive company of awesome women.
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/1-31-24-nortex/2024-01-31/) - 8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to
- [Western PA Virtual Chapter Meeting](https://www.fshdsociety.org/event/2-28-24-wpa-virtual-chapter-meeting/) - 7:00-8:00pm ET | 6:00-7:00pm CST | 5:00-6:00pm MT | 4:00-5:00pm PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community
- [Greater Philadelphia Area Chapter Meeting](https://www.fshdsociety.org/event/3-2-24-greater-philadelphia-area-chapter-meeting/) - 10:15am-1:00pm ET | 9:15am-12:00pm CST | 8:15-11:00am MT | 7:15-10:00am PT Please join us for our next Greater Philadelphia FSHD Chapter meeting on Saturday, March 2 from 10:15am – 1:00pm Eastern. Our special guest speaker will be Steven S. Brooks MD MBA FACC, Senior VP of Medical Sciences and Regulatory Affairs with Vita Therapeutics, and
- [](https://www.fshdsociety.org/event/2-28-24-pa-chaptermeeting/) - 7:00-8:00pm ET | 6:00-7:00p CST | 5:00-6:00pm MT | 4:00-5:00 PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community
- [Young Adults - Preventing & managing secondary health impacts](https://www.fshdsociety.org/event/young-professionals-17/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Please join Robert Ro and the Young Adults group for a discussion on Preventative Care & Managing Secondary Complications! Many of us face challenges beyond reach and mobility, or know that we are at greater risk for secondary complications, and
- [FSHD Radio: Community Profiles - Jane Nemke, Founder of Designs to Thrive](https://www.fshdsociety.org/event/fshd-radio-community-profiles-february-2024/) - Tuesday, February 13th In this month's Community Profiles episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the
- [Early-Onset Parent Roundtable - VLS report](https://www.fshdsociety.org/event/early-onset-2023-2-13/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be sharing news from the FSHD Society's annual Volunteer Leadership Summit in Chicago. Debbie Eggleston and Kristin Zwickau attended in person while Ally Roets beamed herself in via Zoom. They will discuss the progress in pediatric FSHD
- [Virginia Chapter, Monthly Virtual Chapter Meeting](https://www.fshdsociety.org/event/va-chapter-meeting-monthly/2024-01-23/) - 6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we
- [Feb. 10, 2024: Pacific NW Chapter Meeting](https://www.fshdsociety.org/event/pnw-feb24/) - 3:00pm ET | 2:00pm CT | 1:00pm MT | 12:00pm PT Pacific Northwest Chapter Meeting, 12:00-2:00pm PT at the Sellwood Library Meeting Room Address: 7860 SE 13th Ave, Portland 97202 New Year Greetings to our PNW FSHD Community! We are looking forward to having our first meeting of the year in Portland, Oregon on Feb.
- [Greater NYC/NJ-area Virtual Chapter Meeting](https://www.fshdsociety.org/event/greater-nyc-nj-area-virtual-chapter-meeting-2/) - 9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT Join us for a virtual meeting! Saturday, February 10th at 9am ET Dear Friends, Join us for our regular bi-monthly meeting - to provide consistent communication and camaraderie among our group. PLEASE RSVP to receive the Zoom link. Hope to “see” you there! Warmly, David
- [Columbus Chapter Meeting](https://www.fshdsociety.org/event/columbus-chapter-meeting/) - 7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
- [North Carolina Chapter "Third Thursdays"](https://www.fshdsociety.org/event/north-carolina-chapter-forth-monday-2/2023-09-21/) - 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are
- [Feeling Fit with FSHD - Hip flexors part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-3/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We review the hip flexor exercises from two weeks ago. We will be doing exercises on the floor so you may want to use a yoga mat. Frank Hanley will present a
- [Introduction to Breathing Muscle Weakness](https://www.fshdsociety.org/event/breathing-with-fshd-andrea-klein/) - Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how to monitor and manage breathing issues that can arise in people with FSHD. Our presenter, Andrea Klein, founded Breathe with MD, Inc. in memory of
- [Young Adults - CBD and medical marijuana](https://www.fshdsociety.org/event/young-professionals-16/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Many of us have tried or are curious about CBD and medical marijuana to treat pain, anxiety, etc. Our featured guests this month, Claire Szabo-Cassella and Lou Cassella, will share their experiences in seeking relief for Claire, who lives with
- [Young Adults - About Kratom](https://www.fshdsociety.org/event/young-professionals-15/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler Young. About himself Chandler says "I’m 23 and live in North Carolina, was formally diagnosed with FSHD at 16 but showed symptoms very early in
- [Young Adults - Asserting your rights under the ADA](https://www.fshdsociety.org/event/young-professionals-14/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT If you are experiencing some level of disability from your FSHD symptoms (or other issues, for that matter), what are your rights to accessible public spaces, work environments, education, etc.? Does the law protect you? Dani Liptak, a young adult
- [Wellness Hour - On Mattering](https://www.fshdsociety.org/event/38670-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we welcome Isaac and Ora Prilleltensky, who literally wrote the book on How People Matter. Ora is a regular moderator for the Wellness Hour. Her husband Isaac has presented several webinars on mental health and well-being. "Mattering" is
- [Wellness Hour - Ayurvedic medicine](https://www.fshdsociety.org/event/38670-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will discuss Ayurvedic medicine, the ancient Indian system of integrative, holistic medicine. Treatments are personalized and include lifestyle, yogo, diet, and medicinal formulations, mostly plant-based. We will hear from individuals with FSHD who have used Ayurvedic approaches,
- [Feeling Fit with FSHD - Hip flexors](https://www.fshdsociety.org/event/feeling-fit-with-fshd-5/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, Frank Hanley will present a series of exercises for the hip flexors. “I have had some difficulty with steps for a while," he says. "Suddenly, climbing steps has become quite a
- [Feeling Fit with FSHD: 0 to 1000 challenge part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2-2/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We kick off 2024 with something new and completely different. At the first session on January 11, we launched the “0 to 1000” 14 Day Challenge… – Pick an exercise, – Start
- [FSHD Radio](https://www.fshdsociety.org/event/38743/) - Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also
- [Women On Wellness](https://www.fshdsociety.org/event/women-on-wellness-3/2024-12-04/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our
- [Women On Wellness - Next step planning](https://www.fshdsociety.org/event/women-on-wellness-3-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Thanks to our members for responding to our annual survey! Based on your feedback, this month's discussion topics revolve around planning for next steps: What to do when your current care giving plan isn’t working
- [FSHD Radio: Community Profiles with Chelsea Moeller](https://www.fshdsociety.org/event/fshd-radio-ep114-cmoeller/) - Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the
- [New England/Connecticut Chapters, Virtual Meeting](https://www.fshdsociety.org/event/1-24-24-chaptermeeting/) - Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-4/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We kick off 2024 with something new and completely different. At the first session, we will launch the “0 to 1000” 14 Day Challenge… - Pick an exercise, - Start on day
- [FSHD Radio: Project Mercury, A Global Effort to Speed Development and Delivery of FSHD Treatments](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-december-2023/) - Thursday, December 28th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated
- [Sacramento Chapter Meeting](https://www.fshdsociety.org/event/sacramento-chapter-meeting-3/) - EVENT: Sacramento Chapter Meeting DATE: Thursday, January 11, 2024 TIME: 6:30 pm - 7:30 pm PT WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting where we will receive an update on the status of research in the FSHD community. Dr. Bill Lewis, FSHD Society board member, Clinical Professor of Cardiovascular Medicine at UC Davis Medical Center, and Director of
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2-2-2-2/) - DECEMBER 27 MEETING CANCELLED. See you in January! North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting-2/) - DECEMBER MEETING CANCELLED. See you in January! Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At
- [Early-Onset Parent Roundtable - Youth voices](https://www.fshdsociety.org/event/early-onset-2023-2-11/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month we will host a roundtable conversation with young adults with FSHD. They were diagnosed as children or teens and will share their personal journeys of going through adolescence and becoming young adults while navigating the challenges of living
- [Early-Onset Parent Roundtable - Advocating for your child's education](https://www.fshdsociety.org/event/early-onset-2023-2-12/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT For parents, figuring out how to advocate in schools for a child with a disability is like venturing into a jungle without a map or a compass. Having someone to guide you is invaluable. Our guest this month is Shauna
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd/2024-12-12/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed
- [Women on Wellness - What do we want to do this year?](https://www.fshdsociety.org/event/women-on-wellness-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the year off by discussion about spreading our wings with ancillary groups. we'll also be sharing favorite life hacks and what's on our minds - setting our agenda for the coming year. We
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3-2/2023-11-28/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Wellness Hour - Ice breaker](https://www.fshdsociety.org/event/wellness-hour-ice-breaker/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the new year off with an ice breaker online card game. Kind of silly but it's also an effective way to stimulate interesting conversations that will help us all get to know one another better. We hope you'll
- [Wellness Hour](https://www.fshdsociety.org/event/wellness-hour/) - Wellness Hour Monthly Meeting 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in
- [Young Adults - Scapular surgery roundtable](https://www.fshdsociety.org/event/young-professionals-13/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT In some individuals with FSHD, surgery to anchor the shoulder blades to the ribcage can help restore the ability to raise the arms above shoulder height. For the first time ever, we are convening a group of individuals who have
- [FSHD Radio: Community Profiles with Michael Osborne](https://www.fshdsociety.org/event/fshd-radio-community-profiles-december-2023/) - Tuesday, December 12th In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad
- [Wellness Hour - Chair dance party](https://www.fshdsociety.org/event/wellness-hour-14/) - Dancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and energizing Chair Dance Party to celebrate the winter and holiday season. Bring your favorite libation and be prepared to shake, rattle and roll to dance
- [Sacramento Chapter Holiday Gathering](https://www.fshdsociety.org/event/sacramento-chapter-holiday-gathering/) - EVENT: Sacramento Chapter Holiday Gathering DATE: Thursday, December 14, 2023 TIME: 6:00 pm - 8:00 pm PT WHERE: Mimi's Cafe 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Many of our chapter members have requested the opportunity to gather for a social event during the holiday season to network, connect, and celebrate the Sacramento Chapter community we reignited this
- [All Canada Chapters Virtual Meeting, hosted by the Alberta Chapter](https://www.fshdsociety.org/event/all-canada-chapters-virtual-meeting-hosted-by-the-alberta-chapter/) - The Alberta Chapter invites all Canadian Chapter members to join a virtual meeting on January 9th, 2024! Guest speakers include Amanda Hill, Director of Clinical Research at the FSHD Society, Neil Camarta and Craig Kelly of the FSHD Canada Foundation, and Dr. Dillon Chen of Arrowhead Pharmaceuticals. Amanda will be giving us an update on
- [FSHD Radio: Emma Weatherley](https://www.fshdsociety.org/event/fshd-radio-emma-weatherley/) - FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign,
- [FSHD Radio: My Cause, My Cleats with Emma Weatherley](https://www.fshdsociety.org/event/fshd-radio-my-cause-my-cleats-with-emma-weatherley/) - Tune in to a special FSHD Radio episode! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global (our Australian counterpart and fellow Project Mercury member) as his nominated charity for the "My Cause My
- [Idaho Chapter Anniversary Dinner](https://www.fshdsociety.org/event/idaho-chapter-anniversary-dinner/) - Idaho Chapter Anniversary Dinner DATE: Thursday, January 25, 2024 TIME: 6:30 - 8:30 pm MT WHERE: Louie's Pizza & Italian Restaurant, 2500 E Fairview Ave, Meridian, ID 83642 DETAILS: Join us for a special dinner to celebrate the anniversary of our chapter's launch! Come celebrate with our Idaho community as we reflect on the amazing work we've done as a
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-chapter-meeting-2/) - Bay Area Chapter Meeting DATE: Sunday, January 14, 2024 TIME: 1:00 pm - 3:00 pm PT WHERE: Stanford, Hoover Pavillion, Room 204, 211 Quarry Rd, Palo Alto, CA 94304 DETAILS: Please join the Bay Area chapter for our first meeting of 2024. We'll discuss updates, connect with each other, and plan for an exciting year ahead. This meeting will be held
- [St. Louis Chapter Holiday Gathering](https://www.fshdsociety.org/event/st-louis-chapter-holiday-gathering/) - St. Louis Chapter Holiday Gathering DATE: Saturday, December 16, 2023 TIME: 2:00pm - 5:00pm CT WHERE: 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 DETAILS: Join us for a special holiday gathering to celebrate the wonderful work our chapter has done this year, the opportunity to connect with one another, and start brainstorming how we can
- [Young Adults - Mindfulness with Jen Egert](https://www.fshdsociety.org/event/young-professionals-12/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Back by popular demand, Dr. Jen Egert will lead us through a mindfulness meditation session. Dr. Egert is a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops to cope with stress and anxiety. She began her own
- [Colorado Chapter Holiday Social Gathering](https://www.fshdsociety.org/event/colorado-chapter-holiday-social-gathering/) - Hello Friends! I hope you can join us for a Holiday Social Gathering! WHEN: Sunday, December 10, 2023, 3-6pm MT WHERE: Lansdowne Arms - 9352 Dorchester St. in Highlands Ranch. WHAT: Please join us for a holiday social gathering featuring a white elephant gift exchange (details below). Drinks and appetizers will be provided. We hope
- [Feeling Fit with FSHD - Shaking Qigong with Trish Kean](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-11/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us this month for a session with Trish Kean on Shaking Qigong. Trish has been a licensed massage therapist since 1998 and has had a daily Qigong practice since 2005. In
- [Nevada Chapter Holiday Meeting](https://www.fshdsociety.org/event/nevada-chapter-holiday-meeting/) - Date and Time: Wednesday December 6, 2023 at 6:00pm PT Location: Virtually by Zoom: RSVP HERE to receive the zoom link Details: Please join us for a little virtual Holiday Cheer! Let's get-together to reconnect, welcome new members, share information and ask/answer any questions. Bring your favorite holiday drink (a cocktail, hot chocolate, coffee, tea etc.)
- [Early-Onset Parent Roundtable with Eva Chin of Solve FSHD](https://www.fshdsociety.org/event/early-onset-2023-2-10/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for a conversation with Eva Chin, PhD, Executive Director of Solve FSHD, a Canadian company that is focused on accelerating the development of treatments for FSHD. Solve FSHD hosted the pediatric FSHD summit this past September and will
- [Greater NYC/NJ-area Virtual Chapter Meeting](https://www.fshdsociety.org/event/greater-nyc-nj-area-virtual-chapter-meeting/) - Join us for a virtual meeting! Saturday December 9th, 2023 at 9am ET Dear Friends, I hope you can join us for the first of a series of regular bi-monthly meetings to provide consistent communication and camaraderie among our group. This first meeting will be virtual via zoom PLEASE RSVP to receive the Zoom link.
- [Treating FSHD – A broader view](https://www.fshdsociety.org/event/treating-fshd-a-broader-view-with-nicol-voermans-md-phd/) - With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have
- [Ontario Chapter Virtual Social Hour](https://www.fshdsociety.org/event/ontario-chapter-virtual-social-hour/) - Join us for a virtual social gathering before the Holidays! Thursday, December 7th, 2023 - 7:00pm ET via ZOOM Hello Ontario friends, I hope you can join us for a casual, virtual social gathering via Zoom for us all to reconnect before the busy Holidays! PLEASE RSVP. ​​​ "See" you there! Warmly, ~ Carrie Wilkinson,
- [Feeling Fit with FSHD - Holistic paths to wellness part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8-2-2-2/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We welcome back Rita Lynn who will lead a meditation exercise and introduce some yoga positions that can be done while seated. After her diagnosis of FSHD, Rita retired from her photography
- [FSHD Radio Thanksgiving Special](https://www.fshdsociety.org/event/fshd-radio-thanksgiving-special-2/) - Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to extend our appreciation to none other than YOU! This special Thanksgiving broadcast is our way of saying thank you for being a part of our
- [Feeling Fit with FSHD - Holistic paths to wellness](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-10/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT UPDATE - This month's discussion leader is Rita Lynn. She will lead a meditation exercise and then we will watch and participate in exercises that can be done while seated, with video
- [Wellness Hour - Finding reliable health info on the Internet](https://www.fshdsociety.org/event/wellness-hour-13/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT All of us consult "Dr. Google" when we have health questions, but how do we know if the information we find is medically sound. When our own health is involved, this is not something to take lightly! This month, we
- [Sacramento Chapter Meeting](https://www.fshdsociety.org/event/sacramento-chapter-meeting-2/) - EVENT: Sacramento Chapter Meeting DATE: Thursday, November 2, 2023 TIME: 6:00 pm - 7:00 pm PT WHERE: Zoom Meeting, Virtual DETAILS: For many of us, communing with Nature is an important contributor to well-being, but can sometimes seem difficult as an individual with FSHD. Join us for our next Sacramento chapter meeting where FSHD Society member, Paul Miller, will
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-3/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed
- [Feeling Fit with FSHD - Finding your balance](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-9/) - 19:00 PM CET | 18:00 PM UK | 13:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is a fitness trainer who works with clients on improving balance. She was recommended to us by a person with FSHD. She will share her knowledge and exercise tips at this
- [Thanksgiving Special](https://www.fshdsociety.org/event/thanksgiving-special/) - Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to extend our appreciation to none other than YOU! This special Thanksgiving broadcast is our way of saying thank you for being a part of our
- [Michigan Chapter Meeting](https://www.fshdsociety.org/event/michigan-chapter-meeting/) - Meeting Invitation Thursday, November 16, 2023 7:00 - 8:00pmET Via Zoom Join us for our next Michigan Chapter Meeting on Thursday, November 16th, from 7:00 - 8:00 p.m. ET! We'll be celebrating our 2023 Walk & Roll to Cure FSHD success -- we crushed our $25,000 goal! We'll also be discussing our goals for 2024. Please come with ideas of
- [Mid-Atlantic Chapter Meeting](https://www.fshdsociety.org/event/mid-atlantic-chapter-meeting/) - Join us for our next Mid-Atlantic Chapter Meeting on Saturday, November 11th, from 12:00 to 3:00 pm ET for an afternoon of in-person food and fun! We'll be celebrating our 2023 Walk & Roll to Cure FSHD success ($39,200 and counting!), and enjoying some long-overdue social connection. Please bring your favorite board game!!! Lunch will be provided, so RSVP's
- [Ohio FSHD 360](https://www.fshdsociety.org/event/ohio360/) - 9:00 a.m. US Eastern Time doors open | 9:30 a.m. - 3:30 p.m. US ET conference sessions The FSHD Society, in collaboration with the Ohio State University and Nationwide Children's Hospital, is hosting this year’s Ohio FSHD 360 conference. The OSU and Nationwide are international leaders in muscular dystrophy research and clinical trials, and are
- [Young Adults - Clinical trial updates](https://www.fshdsociety.org/event/young-professionals-11/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us as June Kinoshita, Senior Director of Research & Education, answers your questions about current and future clinical trials for FSHD. Robert Ro will share his clinical trial experiences. FSHD Young Professionals is a social and support group focused
- [CarePartner Hour](https://www.fshdsociety.org/event/carepartner-hour/) - Please note, due to Halloween, October's CarePartner Hour has been moved to Wednesday, November 1, 2023. The time and link will remain the same. 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD.
- [Young Professionals: Managing Symptoms](https://www.fshdsociety.org/event/young-professionals-2-7/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Managing Symptoms and Improving Quality of Life with Tara Hill and Glen Denehie FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers
- [CANCELED: Alberta Chapter Brunch and Gathering](https://www.fshdsociety.org/event/alberta-chapter-brunch-and-gathering/) - ** CANCELED ** We are sad to say that due to the lack of RSVP responses, we are canceling the brunch gathering scheduled for this Saturday in Edmonton. Please don't hesitate to reach out, and stay-tuned as we plan other events. Warmly, Jennie Camarta & Karen Camarta FSHD Society Chapter Directors - Alberta Chapter AlbertaChapter@FSHDSociety.org www.FSHDSociety.org
- [Greater Philadelphia Chapter Meeting](https://www.fshdsociety.org/event/greater-philadelphia-chapter-meeting/) - Greater Philadelphia Chapter Meeting Saturday, November 4, 2023 10:00 am – 12:30 pm ET Wissahickon Valley Public Library 650 W. Skippack Pike, Blue Bell, PA 19422 Register here: go.fshdsociety.org/l/701273/2023-05-09/439tq1
- [Women on Wellness - Estrogen & FSHD](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-9/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of obstetrics and gynecology at the University of Rochester. She is a co-author of the pregnancy and reproductive medicine section of the forthcoming international care guideline
- [Women on Wellness - Wheelchairs](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-8/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we're talking about women and wheelchairs: when to think about using one, how to get the right one, how will insurance pay for it (or not)…. And transporting the wheelchair after you procure
- [Connecticut Chapter Virtual Meeting](https://www.fshdsociety.org/event/connecticut-chapter-virtual-meeting/) - Connecticut Chapter Connections Virtual Meeting Join us for a meeting of the Connecticut Chapter on Wednesday, October 25, 2023, from 7:00 from 8:30 pm ET. Please RSVP at the link below!
- [Early-Onset Parent Roundtable - Pediatric FSHD Summit](https://www.fshdsociety.org/event/early-onset-2023-2-9/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The end of September saw the first-ever workshop focused solely on pediatric FSHD. The workshop, sponsored by Solve FSHD, discussed knowledge gaps in the understanding of FSHD in children and teens, trial readiness for pediatric trials, and strategies for ensuring
- [Magic for a Cure (Naples, FL)](https://www.fshdsociety.org/event/magic-for-a-cure-naples-fl/) - Magic for a Cure 6pm Cocktails * 7pm Dinner * 7:45pm Magic The Pointe at Naples Bay Resort: 1500 Fifth Avenue South Naples, FL 34102 Join us for an evening of fun and magic as we raise awareness and critical funding for FSHD! We'll enjoy cocktails, dinner, and entertainment from celebrity magician, John Stessel. Click
- [FSHD Radio: Community Profiles with Donna Russo - Actress, Dancer, Choreographer](https://www.fshdsociety.org/event/fshd-radio-community-profiles-october-2023/) - Tuesday, October 10th This month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin and the Chipmunks and the Magic Camera, as Alvin. Her versatility extends to the world of television and film, where she has left her mark
- [Wellness Hour on Emergency Preparedness](https://www.fshdsociety.org/event/wellness-hour-12/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of how it's important to be prepared for emergencies. Having a disability requires extra planning. A handy reference is FEMA's Disaster Preparedness Guide for Older Adults.
- [Colorado Chapter Meeting](https://www.fshdsociety.org/event/colorado-chapter-meeting/) - Sunday, October 22nd 2023, 3-5pm MT Lansdowne Arms - 9352 Dorchester St. in Highlands Ranch. We'll be in the Library Room Hello Friends, I hope you can join us for our October Chapter Meeting! Our agenda includes updates on clinical trials, fundraising results, and the debut of the Colorado FSHD pain management document and resource
- [Feeling Fit with FSHD - Finding your balance part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8-2-3/) - 19:00 CET | 18:00 UK | 1:00 PM ET | NOON CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is back to answer your questions about her recommendations for improving balance. For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of
- [Putting Fore a Cure](https://www.fshdsociety.org/event/putting-fore-a-cure/) - Putting Fore a Cure Saturday, October 28, 2023 Wildhorse Golf Club Henderson, NV 7:30 am Shotgun Start Mark your calendars for Saturday, October 28th, when we will be holding our very first golf tournament, Putting Fore a Cure! We look forward to coming together, swing by swing, to raise funds as we tee off for
- [FSHD Radio: Hot off the Press with the FSHD Navigator](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-october-2023/) - Thursday, October 26th Today's program features the FSHD Society's Anna Gilmore, who oversees the Society's new initiative, FSHD Navigator. This program will provide superior in-person and web-based assistance to individuals who are seeking solutions to their FSHD-related challenges. These may include getting into clinical trials, finding qualified therapists and physicians, getting advice and help for
- [New Jersey Shore Walk & Roll](https://www.fshdsociety.org/event/new-jersey-shore-walk-roll/) - New Jersey Shore Walk & Roll RESCHEDULED to Saturday, October 28, 2023 • 10:00 am Seaside Heights Boardwalk @ Heiring Ave. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [International Walk & Roll Celebration with FSHD Radio](https://www.fshdsociety.org/event/international-walk-roll-celebration-with-fshd-radio/) - 10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our annual coast to coast Walk & Roll Celebration Livestream! This special three-hour show will stream live on Facebook and YouTube. This year, Tim will be
- [Virginia Walk & Roll](https://www.fshdsociety.org/event/virginia-walk-roll/) - Virginia Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who registered and supported this event. Please stay safe! Saturday, September 23, 2023 Registration opens at 10am Norfolk Zoo, 3500 Granby St., Norfolk, VA 23504 Register
- [Mid-Atlantic Walk & Roll](https://www.fshdsociety.org/event/mid-atlantic-walk-roll/) - Mid-Atlantic Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who registered and supported this event. Please stay safe! Saturday, September 23, 2023 Registration opens, 10:30 am; Walk, 11:00 - 11:30 am; Team photos, awards, and
- [Early-Onset Parent Roundtable - Accessible Driver's License and Modified Vehicles](https://www.fshdsociety.org/event/early-onset-2023-2-8/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The community has shown interest in learning more about resources for modified vehicles and accessible driving licenses. Please join us for a conversation about accessible vehicles for individuals that need modifications to drive. Ally Roets will talk about her son's
- [FSHD Radio: Hot off the Press - Mel Hayes of Fulcrum Therapeutics on the REACH Trial](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-september-2023/) - Thursday, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod (read about the exciting news here), a potential groundbreaking
- [FSHD Radio: Community Profiles - Jenny and Tony Teel, Thriving in an Interabled Marriage](https://www.fshdsociety.org/event/fshd-radio-community-profiles-september-2023/) - Tuesday, September 12th This month, Tim talks with guests Jenny and Tony Teel! This dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Tony, who lives with FSHD, has led them on a remarkable journey of discovering effective ways to tackle
- [Young Professionals - Nutrition and FSHD](https://www.fshdsociety.org/event/young-professionals-2-6/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will discuss a webinar recorded in September 2022 about nutrition and FSHD. Watch the video in advance and compare notes and thoughts with us! The webinar,
- [Women on Wellness - Adaptive cooking](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-7/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Adaptive cooking and adaptive eating will be our topic this month. We'd like to share different ways of cooking and/or providing the necessary nutrients we need daily. Come and join us! This is our mutual
- [Western PA Drum & Roll to Cure FSHD](https://www.fshdsociety.org/event/2023-drum-and-roll/) - Drum & Roll to Cure FSHD Sunday, November 5, 2023 • 1:00 pm National Aviary, The Garden Room, Pittsburgh, PA Register for the 2023 Western Pennsylvania Drum & Roll today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and
- [Feeling Fit with FSHD - Why exercise?](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8-2-4/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for our second session of the month, “Why Exercise?” led by Frank Hanley. In this session, Frank will share the ins and outs of his struggle with FSHD and his
- [Los Angeles Walk & Roll](https://www.fshdsociety.org/event/los-angeles-walk-roll/) - Los Angeles Walk & Roll September 17, 2023 Registration 8am Woodley Park, 6076 Woodley Ave, Encino, CA 91316 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.
- [Pacific Northwest Walk & Roll](https://www.fshdsociety.org/event/pacific-northwest-walk-roll/) - Pacific Northwest Walk & Roll Sunday, September 10, 2023 12:00 PM Cockrell Cider, 6613 114th Ave Ct E, Puyallup, WA. 98372 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [Arizona Walk & Roll](https://www.fshdsociety.org/event/arizona-walk-roll/) - Arizona Walk & Roll Saturday, September 16, 2023 • 7:30 am Scottsdale, AZ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share
- [Bay Area Walk & Roll](https://www.fshdsociety.org/event/bay-area-walk-roll/) - Bay Area Walk & Roll Sunday, September 24, 2023 • 11:00 am Sharon Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can
- [Western PA Drum & Roll Planning Meeting (Virtual)](https://www.fshdsociety.org/event/western-pa-drum-roll-planning-meeting-virtual/) - Western PA Drum & Roll Planning Meeting (Virtual) Wednesday, September 20, 2023 6:30pm – 7:30pm ET Join us as we plan and discuss the upcoming Drum & Roll!
- [Wellness Hour - Preventing Falls](https://www.fshdsociety.org/event/wellness-hour-5/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT September is National Fall Prevention month . Who better to talk about fall prevention than people who are prone to falling (yes that is us -FSHDers!!!). Join us as we share tips and tricks from many in our FSHD community
- [Feeling Fit with FSHD - Anniversary workout](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-6/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT September marks the one-year anniversary of the “Feeling Fit” program. This month, Frank Hanley returns and will provide a brief recap of the many milestones the program reached this past year and
- [Women on Wellness - Advance care planning](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-6/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The Women on Wellness September 6th discussion will be on important documents we all need to consider. These are Advanced Directives, Living Will, Durable Power of Attorney for Healthcare and Finance. Our aim is to
- [FSHD Radio: Hot off the Press - Max Adler, Walk & Roll Team Captain](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-august-2023/) - Thursday, August 24th This month, Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll. We can't wait to hear about the exciting plans for this event: Max has a supporting role in Good Bad Things, and the film's star Danny Kurtzman and director
- [Young Professionals - Genetic Counseling & Family Planning with Julie Cohen](https://www.fshdsociety.org/event/young-professionals-10/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Mark your calendar and join us for a discussion on genetic counseling and family planning with Julie Cohen, ScM, CGC. Julie Cohen is the Director of Genetic Counseling Services at the Kennedy Krieger Institute and is also part of its
- [Young Professionals - Creative Corner](https://www.fshdsociety.org/event/young-professionals-2-5/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Are you an artist with FSHD? Join us for a discussion about the joys and challenges of creating while living with FSHD. We welcome creative types and artists of all mediums as well as anyone just interested in the topic.
- [Pacific Northwest FSHD 360](https://www.fshdsociety.org/event/pnw360/) - 9:00 a.m. US Pacific Time doors open | 10:00-3:00 p.m. US PT conference sessions The FSHD Society, in collaboration with Friends of FSH Research and the University of Washington Seattle, is hosting this year’s Pacific Northwest FSHD 360 conference. The University of Seattle is an international leader in FSHD research and a member of the
- [Young Professionals - Financial planning](https://www.fshdsociety.org/event/young-professionals-9/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest is Don Burke, an FSHD Society member who recently retired from a high-impact career in the federal government. "It would be an honor to share my insights from a 25 year learning journey to be able to retire
- [San Diego Virtual Chapter Meeting ](https://www.fshdsociety.org/event/san-diego-chapter-meeting/) - San Diego Virtual Chapter Meeting Thursday, August 24, 2023 6:00-7:00 pm PT Register below for our upcoming Walk n Roll Committee meeting. By this date you should be signed up online as a Walker or Team Captain HERE and have invited your friends and family to register/donate. It's easy to do. Once you're registered click the
- [British Columbia Walk & Roll](https://www.fshdsociety.org/event/british-columbia-walk-roll/) - British Columbia Walk & Roll Celebration: Tuesday September 5th, 6pm (check-in starts at 5:30pm) The Pint Public House, 455 Abbott Street, Vancouver, BC Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access
- [Mountain State Chapter Meeting](https://www.fshdsociety.org/event/mountain-state-chapter-meeting/) - Mountain State Chapter Meeting Tuesday, August 15, 2023 5:30 pm - 6:30 pm PT | 6:30 pm - 7:30 pm MT Join us for a special chapter meeting for all Mountain state chapters (Colorado, Idaho, Utah, and Nevada) where the FSHD Society's Chief Science Officer, Dr. Jamshid Arjomand, will provide attendees with an overview of current
- [CenTex Virtual Chapter Meeting](https://www.fshdsociety.org/event/centex-virtual-chapter-meeting/) - CenTex Virtual Chapter Meeting Monday, August 21, 2023 7:00pm – 8:00pm CT Join us as we chat about the upcoming Walk & Roll to Cure FSHD and the FSHD 360!
- [Connecticut Chapter Annual Luncheon](https://www.fshdsociety.org/event/connecticut-chapter-annual-luncheon/) - Connecticut Chapter Annual Luncheon Saturday, August 26, 2023 12:00pm – 2:00pm ET On the Border Mexican Grill & Cantina 1519 Silas Deane Highway Rocky Hill, CT 06067 Join us to meet new people, reconnect, and celebrate!
- [FSHD Radio: Community Profiles - Ryan Levinson, Sailor & FSHD Voyager](https://www.fshdsociety.org/event/fshd-radio-community-profiles-august-2023/) - Tuesday, August 8th This month, Tim has the pleasure of sitting down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan's remarkable story makes this an episode that you won't want to miss! Diagnosed with FSHD as a teenager, Ryan's unwavering determination has never allowed his diagnosis to stand in the
- [Young Professionals - FSHD and Relationships with Jenny and Tony Teel](https://www.fshdsociety.org/event/young-professionals-8/) - 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us for an insightful discussion with special guests Jenny and Tony Teel! This dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Tony, who lives
- [Sacramento Chapter Meeting](https://www.fshdsociety.org/event/sacramento-chapter-meeting/) - DATE: Saturday, August 19, 2023 TIME: 5:00 pm - 7:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 Join us for an in-person get-together where you will have the chance to meet and connect with other members of the community, hear from FSHD Society staff about upcoming events, and learn about new and exciting updates.
- [Early-Onset Parent Roundtable - Pediatric Updates from Our Parent Group](https://www.fshdsociety.org/event/early-onset-2023-2-7/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Many of you have asked us to periodically update you on the advocacy initiatives the Early-Onset Chapter has been working on, so we set aside our August meeting to update the parents on the ongoing process in getting pediatrics included
- [Feeling Fit with FSHD with Rita Lynn](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for a session led by Rita Lynn Lawrence. After her diagnosis of FSHD, she retired from her photography career and became an advocate for wellness and harm reduction through holistic
- [FSHD Radio: Hot off the Press - the 2023 Walk & Roll to Cure FSHD with Beth Johnston](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-july-2023/) - Thursday, July 27th The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely
- [Feeling Fit with FSHD - Rita Lynn Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for our second session led by Rita Lynn Lawrence. If you attended the first session, here's your chance to ask questions. After her diagnosis of FSHD, she retired from her
- [Team Captain Social Hour](https://www.fshdsociety.org/event/team-captain-social-hour/) - Thursday, August 3, 2023 7pm ET/6pm CT/5pm MT/4pm PT We'll bring together all our team captains via Zoom, to celebrate and honor your hard work, help you pack your toolkit for success, and have a little fun! Invite your Team Members, too!
- [Western PA Summer Picnic](https://www.fshdsociety.org/event/western-pa-summer-picnic/) - Western PA Summer Picnic Saturday, August 5th, 2023 Adams Township Community Park, 698 Valencia Road, Mars, PA 16046 More details forthcoming! We hope you can join us again this year for the annual summer gathering of the Western PA Chapter! We will be returning to the fantastic Adams Township Community Park pavilion, for a BBQ
- [FSHD University - Annual drug development update](https://www.fshdsociety.org/event/fshd-university-annual-drug-development-update/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Every year, we bring you an update on therapy development for FSHD. What strategies are being considered? How are different candidate drugs progressing through the process of reaching the clinic? What’s the latest on clinical trials? Nick Johnson, MD, director of
- [FSHD University: MOVE and MOVE+ Update](https://www.fshdsociety.org/event/fshd-university-move-and-move-update/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT NOTE: Date has been changed from July 20 to October 19. MOVE and MOVE+ are the largest natural history studies to date of FSHD. Our webinar will be given by Michaela Walker, who is research project manager for these studies at
- [FSHD University - Physical Therapy for Shoulder Issues in Kids](https://www.fshdsociety.org/event/fshd-university-physical-therapy-for-shoulder-issues-in-kids/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children with FSHD. Pelsma will describe how children with scapular weakness often use compensational strategies, especially when using the arm above shoulder level, that can be maladaptive, and
- [FSHD University - FSHD Experiences: Insights from Europe](https://www.fshdsociety.org/event/fshd-university-fshd-experiences-insights-from-europe/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. She will be presenting the results from the FSHD European Patient Survey. The survey received over 1,000 responses from 26 countries within
- [FSHD University - Epic Bio's FSHD Program](https://www.fshdsociety.org/event/fshd-university-epic-bios-fshd-program/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Epic Bio, a San Francisco based therapeutics company, is developing a gene therapy medicine specifically for FSHD patients. The new product, termed EPI-321, leverages a CRISPR-based platform to precisely find and fix the specific issue in the genome that causes FSHD.
- [Wellness Hour - On Birding](https://www.fshdsociety.org/event/wellness-hour-6/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT For many of us, communing with Nature is an important contributor to wellbeing, so we are looking forward to this month's discussion. FSHD Society member Paul Miller will be speaking about "Bringing the beauty of birds into our daily lives."
- [Feeling Fit with FSHD - Tips from a former dancer](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8-2-2/2023-12-19/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-8-2/2023-09-28/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed
- [Feeling Fit with FSHD - Sharing strategies](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-8/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Ruth Hereford from the Midlands Muscular Dystrophy Centre and a long-time champion of the benefits of exercise for FSHD will lead a discussion today on "sharing strategies from nutrition to transition." Our
- [Atlanta Walk & Roll](https://www.fshdsociety.org/event/atlanta-walk-roll/) - Atlanta Walk & Roll Sunday, October 15, 2023 Registration at 10:00 a.m. Chattahoochee Nature Center, 9135 Willeo Rd, Roswell, GA 30075 Register to “walk or roll" today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [Women on Wellness - Questions I wish I could ask](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-5/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Beth Babich is moderating this month's Women on Wellness around a topic she has been eager to discuss: Questions I wish I could ask. Do you have some too? This is your opportunity to unburden
- [Feeling Fit with Ryan Levinson](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-7/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join this month's guest, Ryan Levinson, who will be sharing some of his favorite "exercise cheats." Ryan is a legend in our community for his physical training regimen that has enabled him
- [Early-Onset Parent Roundtable: Pediatric Updates from Dr. Jeffrey Statland](https://www.fshdsociety.org/event/early-onset-2023-2-4/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for a conversation with Jeffrey Statland, Professor of Neurology at University of Kansas Medical Center in Kansas City, Kansas. He is the co-director of the FSHD Clinical Trial Research Network (CTRN) and his specific research interest over the
- [Young Professionals - Adjusting to Life with FSHD](https://www.fshdsociety.org/event/young-professionals-2-4/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Young Professionals - Mind-Body Connection with Dr. Jennifer Egert](https://www.fshdsociety.org/event/young-professionals-7/) - 7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT This week, we are excited to welcome Jennifer Egert, PhD, as our guest speaker! Dr. Egert is a clinical psychologist with FSHD who offers mindfulness-based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with
- [FSHD Radio: Community Profiles](https://www.fshdsociety.org/event/fshd-radio-community-profiles-july-2023/) - Tuesday, July 11th For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist's support, she founded
- [Wellness Hour - Summertime Happy Hour](https://www.fshdsociety.org/event/wellness-hour-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Prepare your favorite alcoholic or non-alcoholic drink (you can download below a pdf of some cocktail recipes created by Susie Kanewske, director of the Chicagoland chapter formerly the Northwest Pacific chapter director). We want everyone to tell us what they
- [Women on Wellness - Activities of daily living](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-4/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will continue our robust discussion on instrumental activities of daily living (ADLs). We encourage all our Women on Wellness to share their great tips and tricks (and challenges) with preparing meals, housekeeping,
- [Young Professionals - Improving Your Quality of Life with FSHD](https://www.fshdsociety.org/event/young-professionals-2-3/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT This Saturday's theme is "Improving Your Quality of Life with FSHD." We'll share information and habits that we’ve found to be helpful and discuss things we plan to try in the future to make living with FSHD a little easier.
- [Western PA Chapter Meeting](https://www.fshdsociety.org/event/western-pa-chapter-meeting/) - Western PA Chapter Meeting Wednesday, June 21 6:30 – 8:00pm ET Please join us for a virtual meeting of the Western PA Chapter to chat among ourselves, plan our family picnic scheduled for Saturday, August 5, discuss the launch of this year's Drum & Roll to Cure FSHD, learn about the latest developments at the
- [British Columbia Chapter World FSHD Day Celebration](https://www.fshdsociety.org/event/british-columbia-chapter-world-fshd-day-celebration/) - Hello Friends! Please join us on June 20th, 2023 at 6pm as we celebrate World FSHD Day together! WHERE: Tap & Barrel - Convention Centre : 876-1055 Canada Place, Vancouver, BC V6C 0C3 WHY: It's WORLD FSHD DAY! The global day of awareness for FSHD. WHAT: Let's have some fun as we raise awareness. Appetizers and
- [Young Professionals - Living with FSHD](https://www.fshdsociety.org/event/young-professionals-6/) - 7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Heartland Chapter Happy Hour](https://www.fshdsociety.org/event/heartland-chapter-happy-hour/) - Heartland Chapter Happy Hour Friday, July 28, 2023 3:30 pm - 5:30 pm CT Boulevard Beer Hall - 2534 Madison Ave, Kansas City, MO 64108 Join us for an afternoon of fun and networking where you can connect with other members of the FSHD community. Drinks and light appetizers will be provided. Please RSVP below.
- [San Diego Walk & Roll](https://www.fshdsociety.org/event/san-diego-walk-roll/) - San Diego Walk & Roll Saturday, September 30, 2023 Registration starts at 8:00 a.m. Harbor Island Park, 1875 Harbor Island Dr., San Diego, CA 92101 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page
- [St. Louis Walk & Roll](https://www.fshdsociety.org/event/st-louis-walk-roll/) - St. Louis Walk & Roll Saturday, September 23, 2023 9am-Registration/10am-Walk&Roll Hawk Ridge Park/Zachary's Playground, 8392 Orf Road, Lake Saint Louis, MO 63367 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to
- [Colorado Walk & Roll](https://www.fshdsociety.org/event/colorado-walk-roll/) - Colorado Walk & Roll Sunday, September 10, 2023 Registration & Check-in 8am Philip S. Miller Park Amphitheater - Castle Rock, CO Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [CenTex Walk & Roll](https://www.fshdsociety.org/event/centex-walk-roll/) - CenTex Walk & Roll Sunday, September 30, 2023 8:00 am Champion Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your
- [Minnesota Walk & Roll](https://www.fshdsociety.org/event/minnesota-walk-roll/) - Minnesota Walk & Roll Sunday, September 24, 2023, 8:00 am Normandale Lake Bandshell Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share
- [Kansas City Walk & Roll](https://www.fshdsociety.org/event/kansas-city-walk-roll/) - Kansas City Walk & Roll Saturday, September 30, 2023 Macken Park Festival Shelter Registration 9:00am, Opening Ceremonies 9:45am, Walk Starts 10:00am Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [North Texas Walk & Roll](https://www.fshdsociety.org/event/north-texas-walk-roll/) - North Texas Walk & Roll Sunday, September 24, 2023 2:00 p.m. registration Warren Sports Complex 7599 Eldorado Parkway, Frisco, TX 75033 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a
- [Chicago Walk & Roll](https://www.fshdsociety.org/event/chicago-walk-roll/) - Chicago Walk & Roll Saturday, September 16th 2023, 10:00 am Citizens Park, Robert Soule Amphitheater Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you
- [Intermountain Walk & Roll](https://www.fshdsociety.org/event/intermountain-walk-roll/) - Intermountain Walk & Roll Saturday, September 23, 2023 9:00am Registration Canyon Rim Park, East Pavilion, Millcreek UT Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From
- [New England Walk & Roll](https://www.fshdsociety.org/event/new-england-walk-roll/) - New England Walk & Roll Saturday, October 7, 2023 11:00am Check In Optum Roofdeck, 1325 Boylston St., Boston MA 02215 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art
- [Columbus Walk & Roll](https://www.fshdsociety.org/event/columbus-walk-roll/) - Columbus Walk & Roll Saturday, September 23, 2023 9:00 am Coffman Park Pavilion 5200 Emerald Pkwy Dublin, OH 43017 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising
- [NE Florida Walk & Roll](https://www.fshdsociety.org/event/ne-florida-walk-roll/) - NE Florida Walk & Roll Saturday, September 16, 2023 Arrival & check-in starting at 5pm. Burgers and reception 5:30 - 6:30pm, Baseball game starts at 6:35pm. Jacksonville Jumbo Shrimp Baseball Game at 121 Financial Ballpark Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you.
- [West Michigan Walk & Roll](https://www.fshdsociety.org/event/west-michigan-walk-roll/) - West Michigan Walk & Roll Mulligan's Hollow Lodge, 600 Y Drive, Grand Haven, MI. 49417 Sunday 9/24. Registration Opens: 2pm; Walk Begins: 2:30pm. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to
- [Alberta Walk & Roll](https://www.fshdsociety.org/event/alberta-walk-roll/) - Alberta Walk & Roll Saturday, September 9, 2023 Registration at 8:30 a.m. TENTATIVE - RiverWalk Plaza: 618 Confluence Way SE Calgary AB T2G 0G1 Canada Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page
- [Ontario Walk & Roll](https://www.fshdsociety.org/event/ontario-walk-roll/) - Ontario Walk & Roll Saturday, September 16th 2023 9:00 am check in Lake Aquitaine Park - Mississauga, ON Register to "walk or roll" today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.
- [Atlanta Chapter World FSHD Day Watch Party](https://www.fshdsociety.org/event/atlanta-chapter-world-fshd-day-watch-party/) - Join us for the Atlanta Chapter Watch Party as the King & Queen Buildings light up orange in honor of World FSHD Day! Tuesday, June 20, 2023 7:30pm ET El Azteca Perimeter 6115 Peachtree Dunwoody Road, Ste. 100, Sandy Springs, GA 30328
- [Wellness Hour Movie Night - Crip Camp](https://www.fshdsociety.org/event/wellness-hour-4/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night conversation. In the early 1970s, teenagers with disabilities faced a future shaped by isolation, discrimination and institutionalization. Camp Jened, a ramshackle camp “for the handicapped”
- [Feeling Fit with FSHD Special Summertime Routine](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-7/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Frank Hanley will lead today's session with a special routine for the summer. We can't wait to find out what he has in store!. For people living with FSHD who are interested
- [Feeling Fit with FSHD - Bill Herzberg](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-5/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Last month we had the wonderful opportunity to work out with fitness trainer, Mitch Wade. This month, we bring you Bill Herzberg, a retired physician with FSHD who sought help from Mitch.
- [Idaho Chapter Meeting](https://www.fshdsociety.org/event/idaho-chapter-meeting/) - Idaho Chapter Meeting Thursday, June 22, 2023 6:30pm MT Louie's Pizza and Italian Restaurant at 2500 E Fairview Ave, Meridian, ID 83642 Join us for dinner! This will be an opportunity to spend an evening with good food, socializing and meeting FSHD Society staff members, Beth and Ashley. Event is free, but please RSVP.
- [New York City/NJ Virtual Chapter Meeting](https://www.fshdsociety.org/event/new-york-city-nj-virtual-chapter-meeting/) - New York City/NJ - Area Chapter Tuesday, June 13, 2023 7:00pm ET via Zoom ​ We hope you can join us for a virtual chapter meeting! We will be discussing our plans for 2023, clinical trial updates and will be learning about our virtual communities and how to get involved with both. Pencil us in
- [FSHD Radio: Hot off the Press - IRC 2023 Recap](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-june-2023/) - Thursday, June 22nd On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated
- [FSHD Radio: Community Profiles with Actress and Advocate Lauren "Lolo" Spencer](https://www.fshdsociety.org/event/fshd-radio-community-profiles-june-2023/) - Tuesday, June 13th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month!
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-chapter-meeting/) - Bay Area Chapter Meeting Sunday, June 11, 2023 1:00-3:00 pm PT Hoover Pavilion, Room 208 Stanford Campus Quarry Road, Palo Alto Let's meet together in-person (or Zoom) so that we can catch up with each other and hear about the latest research studies for FSHD. This event is free. Please RSVP, let us know how many will be attending,
- [World FSHD Day!](https://www.fshdsociety.org/event/world-fshd-day/) - Join us for the annual World FSHD Day to raise awareness of FSHD globally over social media on June 20th! Learn about the orange slice selfie campaign and download our toolkit HERE. We will also be celebrating this day with special FSHD Radio mini-episodes that will be released throughout the day. More details to come!
- [Ontario Chapter Meeting](https://www.fshdsociety.org/event/ontario-chapter-meeting/) - Join us for an informal breakfast/brunch gathering! Saturday, June 10th, 2023 - 11:00am ET Symposium Cafe: 3055 Dundas St W in Mississauga Dear Ontario friends, Come join your fellow Ontario FSHDers for a light breakfast/brunch/coffee, FSHD updates, and great conversation! We can catchup with old friends and welcome new ones! Space is limited, so PLEASE RSVP. See you there!
- [Feeling Fit with FSHD - Chair Yoga](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-6/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Donna Russo has been promoting adaptive yoga and dance for many years and will be leading a session on Chair Yoga. Come in comfortable clothes and bring any supports you might need.
- [Women on Wellness - Instrumental activities of daily living](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-3/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is what we call "Instrumental ADL’s (e.g. managing finances, housekeeping, shopping, yard needs, etc.). We all face these challenges and look forward to our discussion and sharing of solutions. This is
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2-2-2/2023-06-28/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2-2/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you there! ~Glen Denehie, North Texas Chapter Director
- [PNW Chapter World FSHD Day & Father's Day Celebration](https://www.fshdsociety.org/event/pnw-chapter-world-fshd-day-fathers-day-celebration/) - Celebrate World FSHD Day & Father’s Day at the ballpark with the PNW Chapter! Saturday, June 17, 2023 6:00pm Cheney Stadium, Tacoma Tacoma Rainiers vs. Albuquerque Isotopes After you register, Selina will mail your free tickets!
- [Young Professionals: Virtual Escape Room Social Hour](https://www.fshdsociety.org/event/young-professionals-2-2023-05-27/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Join us for a virtual escape room! For this Saturday meeting, we’ll solve puzzles together in a virtual environment. We look forward to getting to know each other during this online adventure! FSHD Young Professionals is a social and support
- [North Carolina Chapter "Fourth Mondays"](https://www.fshdsociety.org/event/north-carolina-chapter-forth-monday/2023-05-22/) - Dear friends, Welcome to the "Fourth Monday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are looking forward to catching up with everyone, and sharing our updates
- [FSHD Radio: Hot off the Press - World FSHD Day Plans with Leigh Reynolds](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-may-2023/) - Thursday, May 25th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated
- [Early-Onset Parent Roundtable:  Speech and swallowing](https://www.fshdsociety.org/event/early-onset-parent-roundtable-speech-and-swallowing/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Children with early-onset FSHD often struggle with speech and swallowing due to weak muscles around the mouth. Therapy can help! Our guest this month is Kiera Berggren, a research speech-language pathologist (SLP) in the Department of Neurology at Virginia Commonwealth
- [FSHD Lab Day at Nationwide Children's Hospital](https://www.fshdsociety.org/event/fshd-lab-day-at-nationwide-childrens-hospital/) - Please join the Columbus Chapter and Nationwide Children's Hospital for an exciting day of research and community! Hear from Dr. Kevin Flanigan, Dr. Scott Harper, and Dr. Nizar Saad, then have the opportunity to actively participate in a study! In addition, hear from FSHD Society's Columbus Chapter Director Susan Aumiller, screen a short documentary, and
- [Tampa Chapter Gathering](https://www.fshdsociety.org/event/tampa-chapter-gathering/) - Tampa Chapter Gathering Sunday, June 11th, 4pm True Food Kitchen 3645 Midtown Dr, Tampa, FL 33607 Dear friends, Please come out and join us for another great get-together of the Tampa Chapter! We’ll be meeting back at True Food Kitchen. Please RSVP below by June 2nd so that we can make sure there’ll be
- [Rochester FSHD 360](https://www.fshdsociety.org/event/rochester-fshd-360/) - 9:00 a.m. US ET doors open | 10:00-4:00 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester FSHD 360 conference. The University of Rochester is an epicenter for FSHD research in the U.S. in its role as the data hub for the
- [Wellness Hour on Friendship: The Elixir of Life](https://www.fshdsociety.org/event/wellness-hour-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT In the last few months, a raft of articles have been published on the topic of friendship. Some were about research on the topic, some were about new books that have just come out, and some were just reflections on
- [Alberta Chapter Meeting](https://www.fshdsociety.org/event/alberta-chapter-meeting/) - Please join us on Saturday June 24th for a casual breakfast get-together, and for our first in-person meeting of the Alberta Chapter! WHAT: Let us treat you to breakfast, hear some important FSHD updates, and have great conversation. This is a family-friendly event so bring the whole family! WHEN: Saturday June 24th at 9am MT WHERE:
- [Connecticut Connections Reunion](https://www.fshdsociety.org/event/connecticut-connections-reunion/) - Connecticut Connections Reunion Wednesday, May 31st, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, Please join us for a virtual reunion of the Connecticut Connections group! It’s been a long time since the group has been together. I’d like to discuss ideas for the annual summer
- [North Carolina Chapter Lunch](https://www.fshdsociety.org/event/north-carolina-chapter-lunch/) - This event has been canceled.
- [Women on Wellness - Managing fatigue](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Fatigue is one of the biggest challenges we face, and many of us have come up with strategies to manage fatigue. Let's share! This is our mutual support and social group for women of all
- [All-Texas Chapter Meeting: Travel Tips](https://www.fshdsociety.org/event/all-texas-chapter-meeting-travel-tips/) - For this All-Texas Chapter Meeting we will be joined by guest Debra Kerber from Easy Access Travel. She'll be giving us tips on accessible travel! RSVP below.
- [Early-Onset Parent Roundtable - Special Needs Financial Planning](https://www.fshdsociety.org/event/early-onset-2023-2-5/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Special Needs Planning Beyond One Day at a Time As a special needs family, living in a perpetual state of reactivity can feel inescapable. You can only tackle the most urgent thing in front of you – and the rest
- [Young Professionals: Five Approaches to FSHD and Fitness](https://www.fshdsociety.org/event/young-professionals-5/) - 7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [FSHD Radio: Community Profiles - All About Adoption](https://www.fshdsociety.org/event/fshd-radio-community-profiles-may-2023/) - Tuesday, May 9th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. Family planning and adoption can be difficult subjects for anyone to navigate, especially
- [Young Professionals: What You Need to Know about Clinical Trials](https://www.fshdsociety.org/event/young-professionals-2-2/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Michigan Chapter – Inaugural Meeting!](https://www.fshdsociety.org/event/michigan-chapter-inaugural-meeting/) - Join us virtually as we launch our new Michigan Chapter! Come to meet our new Chapter Director, Cassie Harris, to get to know one another, and to find out about all the upcoming events in the area! Please RSVP to receive the zoom link: Learn more about Cassie, and sign up to receive all the
- [North Carolina Chapter "Third Thursdays"](https://www.fshdsociety.org/event/north-carolina-chapter-third-thursdays/2023-01-19/) - Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are looking forward to catching up with everyone, and sharing our updates
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2022-11-01/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2022-10-26/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-01-25/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Northeast Florida Chapter Brunch](https://www.fshdsociety.org/event/northeast-florida-chapter-brunch/) - Northeast Florida Chapter Brunch Saturday, April 22nd; 11am - 2pm Noura's Cafe, 1533 University Blvd W, Jacksonville FL 32217 Dear Friends, We hope you can join us for Saturday, April 22nd in Jacksonville, FL! We are excited to gather together in-person and meet new friends and neighbors you may not know you had! This will
- [Young Professionals](https://www.fshdsociety.org/event/young-professionals-2/) - 11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Early-Onset Parent Roundtable - Sharon Terry: mom, advocate, change-maker](https://www.fshdsociety.org/event/early-onset-2023-2-6/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for a conversation with Sharon F. Terry, President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for ordinary people to take charge
- [Feeling Fit with FSHD: Lower extremities Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-5/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT NOTE DATE CHANGE FROM April 27 to April 26. For the April “Feeling Fit with FSHD” workshops, Frank Hanley will present several exercises to flex, stretch and strengthen the feet, ankles, knees
- [San Diego Brew Quest to Cure FSHD](https://www.fshdsociety.org/event/san-diego-brew-quest-to-cure-fshd-2/) - March 9 - 26 Brew Quest – A Quest to Cure FSHD Fundraising for FSHD Society Discover new breweries around the Kearny Mesa/Miramar/Mira Mesa area while supporting our organization. At each brewery, make a qualifying purchase. Grab your map and ask the brewery to stamp it (each brewery has a unique stamp) with your qualifying
- [Idaho Talent Fest 2023!](https://www.fshdsociety.org/event/idaho-talent-fest-2023/) - Idaho Talent Fest 2023 - Saturday, April 29th Join us April 29th at the Boise State University's Special Events Center for the 3rd Annual Idaho Talent Fest to Cure FSH Muscular Dystrophy presented by the FSHD Society Idaho Chapter, and Aesthetic Eye, PC. This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for
- [British Columbia Virtual Chapter Meeting](https://www.fshdsociety.org/event/british-columbia-virtual-chapter-meeting/) - Hello BC Friends! Please join us for a virtual meeting on May 3rd, 2023 at 6pm PT! Our guest speaker will be Dr. Jamshid Arjomand, Chief Science Officer at the FSHD Society. He will be speaking about FSHD Clinical Trial readiness, and will give a current update on FSHD therapeutic development. Come with all of
- [Nevada Virtual Chapter Meeting](https://www.fshdsociety.org/event/nevada-virtual-chapter-meeting/) - Nevada Virtual Chapter Meeting 7:00 PM to 8:00 PM PT Join us on Zoom as we introduce Leslie Truman as our new Nevada Chapter Director! RSVP with the link below to let us know you’re coming. We hope to see you there!
- [FSHD Radio: Hot off the Press with Amanda Hill on the New Era of Clinical Trials](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-april-2023/) - Thursday, April 27th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated
- [FSHD Radio: Community Profiles with Musician Apex Frazier](https://www.fshdsociety.org/event/fshd-radio-community-profiles-april-2023/) - Tuesday, April 11th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. In this month's community profiles episode, Tim talks with Apex Frazier. Apex is
- [Young Professionals: FSHD Journeys & Encouragement](https://www.fshdsociety.org/event/young-professionals-4/) - 7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Feeling Fit with FSHD - Training with Mitch Wade](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-4/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, we're excited to welcome Mitch Wade, a fitness trainer from Portland, Oregon. Mitch is a legend in the FSHD community for his understanding of FSHD and results he has achieved
- [Feeling Fit with FSHD - Lower extremities](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-3/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For the April “Feeling Fit with FSHD” workshops, Frank Hanley will present several exercises to flex, stretch and strengthen the feet, ankles, knees and legs. He will also review several breathing techniques
- [FSHD University: MANOUEVRE clinical trial](https://www.fshdsociety.org/event/fshd-university-manouevre-clinical-trial/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT In October 2022, Roche/Genentech shared with us plans to initiate a new trial called MANOEUVRE. This global Phase 2 clinical study will evaluate GYM329 (RO7204239), an investigational anti-myostatin antibody targeting muscle growth, in individuals living with FSHD (NCT05548556). We have invited
- [Wellness Hour - All about wheelchairs](https://www.fshdsociety.org/event/wellness-hour-11/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is all about wheelchairs. How do you know when you need one? What psychological barriers do people face in making this transition? What benefits to people experience when they decide start using one? How do you
- [Feeling Fit with FSHD: Hands and arms part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-4/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” - Frank Hanley This part 2 of Frank
- [Women on Wellness - Looking good!](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/) - UPDATED: Date changed this month because of Passover 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our conversations about tips for make-up, hair styling, dressing, finding cute shoes, and managing day to day challenges so that we feel our best! This is our mutual
- [New England Chapter Movie Night & Discussion](https://www.fshdsociety.org/event/new-england-chapter-movie-night-discussion/) - Wednesday, April 12th, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/83644567187?pwd=MnhSd0lPTVdUQlZYYzhhQ0VCdEI1UT09 Dear friends, I’d like to invite you join me for a lively Virtual Movie Night, hosted by the New England Chapter. We’ll be watching the Red Scooter Diaries short documentary together, which features the story of one
- [New Hampshire Virtual Catch-Up](https://www.fshdsociety.org/event/new-hampshire-virtual-catch-up/) - Wednesday, March 29th, 2023 8pm ET | 7pm CT | 6pm MT | 5pm PT Via Zoom: Invite Link Invite Link https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, It’s been such a long time since the New Hampshire group got together for a virtual chat! Whether or not you have joined this meeting in the past, we welcome all
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023-2-3/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will
- [FSHD University: Novel treatment strategies for FSHD](https://www.fshdsociety.org/event/fshd-university-novel-treatment-strategies-for-fshd-2/) - 1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD is an assistant professor at the Center for Gene Therapy at Nationwide Children’s Hospital. Dr. Saad worked on FSHD for several years in the laboratory of Scott Harper, PhD, and has been involved in the development of
- [Wellness Hour - Toward Hope](https://www.fshdsociety.org/event/wellness-hour-2022-03-14-2022-10-10-2022-11-14-2023-02-13-2/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a
- [Wellness Hour - "Movie Night"](https://www.fshdsociety.org/event/wellness-hour-2022-03-14-2022-10-10-2022-11-14-2023-02-13-3/) - 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will discuss a film, I Didn’t See You There. The idea is for you to watch it ahead of time and then join us on Zoom for the discussion. But if you don't have time to see
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-3/2023-12-06/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-3/2023-02-28/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27-2/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is continuing last month's talk about How do we take care of ourselves? How do we get outside help for our partner when needed? This monthly meeting is for those of you who are providing care to
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023-2/2024-02-20/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3/2023-12-14/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed
- [Women on Wellness - Keeping up appearances](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01-2/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will continue our conversations about Challenges (and over coming them!) with Shoes, Dressing, Makeup, Hair and Appearance specifics. Yielding-Feeling good about our appearance. This is our mutual support and social group for women
- [FSHD Radio: Hot off the Press](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-march-2023/) - Thursday, March 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
- [FSHD Radio: Community Profiles](https://www.fshdsociety.org/event/fshd-radio-community-profiles-march-2023/) - Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month, our Community Profiles guest is entrepreneur and philanthropist
- [Colorado Chapter Meeting and Social Gathering!](https://www.fshdsociety.org/event/colorado-chapter-meeting-and-social-gathering/) - Please JOIN US for our first Chapter meeting and social gathering of 2023, and to personally welcome our new Chapter Director, Kurt Spiegel! Sunday April 2nd, 2023: 3pm - 5pm Lariat Lodge Brewing Company 12684 W Indore Pl, Littleton, CO 80127 PLEASE RSVP by March 27 to ColoradoChapter@FSHDSociety.org Appetizers and drinks will be served! We will
- [Young Professionals](https://www.fshdsociety.org/event/young-professionals-3/) - 7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a
- [Central Texas Chapter Happy Hour](https://www.fshdsociety.org/event/central-texas-chapter-happy-hour/) - Chapter Happy Hour Saturday, April 1, 2023 3:30pm - 5:30pm CT District Kitchen & Cocktails (Anderson Lane Location) 7858 Shoal Creek Blvd, Ste. B Austin, TX 78757 Please mark your calendars for the CenTex Chapter Happy Hour in Austin! We'll be meeting up at the District Kitchen & Cocktails to eat, chat, and celebrate our Tacos
- [Houston Area Happy Hour](https://www.fshdsociety.org/event/houston-area-happy-hour/) - Chapter Happy Hour Sunday, March 26, 2023 3:30pm - 5:30pm CT Johnny Tamales Cantina 4647 East Sam Houston Pkwy S Pasadena, TX 77507 Please mark your calendars for the Houston-area FSHD Society Happy Hour in Pasadena! We'll be meeting up at Johnny Tamales Cantina to eat, drink and chat! This will be an informal gathering,
- [North Texas Happy Hour](https://www.fshdsociety.org/event/north-texas-happy-hour/) - Chapter Happy Hour Saturday, March 25, 2023 11:30am - 1:30pm CT Down South Kitchen & Bakery 6500 Cascades CT Ste. 100 The Colony, TX 75056 Dear Friends, Please mark your calendars for the NorTex Chapter Happy Hour in The Colony! We'll be meeting up at the Down South Kitchen & Bakery to eat, chat, and
- [East TN Chapter Meeting](https://www.fshdsociety.org/event/east-tn-chapter-meeting-2/) - Come meet us! East TN Chapter Meeting Tuesday, March 21, 2023 5:00pm - 6:00pm Eastern Time ​Cedar Bluff Branch Library Cedar Bluff Meeting Room 9045 Cross Park Drive Knoxville, TN 37923 Dear friends, Please pencil us in for an in-person chapter meeting! We are so excited to get the group back together again to
- [Alberta Chapter Inaugural (Virtual) Meeting](https://www.fshdsociety.org/event/alberta-chapter-inaugural-virtual-meeting/) - Please join us for the first Alberta Chapter Meeting (virtual) on Sunday, March 12th at 10:00am MT via ZOOM! Please RSVP! Come and meet the Chapter Co-Directors, Jennie and Karen Camarta, and hear about our exciting plans to build the FSHD Community in Canada as we prepare for upcoming clinical trials. You can get the latest information about
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [Feeling Fit with FSHD: Hands and arms](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-3-2/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” - Frank Hanley Frank Hanley returns to lead
- [Greater Philadelphia Chapter Meeting](https://www.fshdsociety.org/event/greater-philadelphia-chapter-meeting-5/) - Come meet us! Greater Philadelphia Chapter Meeting Saturday, March 25, 2023 10:00am - 12:00pm Eastern Time ​Wissahickon Valley Public Library 650 W Skippack Pike Blue Bell, PA 19422 Or via Zoom: Click here to join Dear friends, Please pencil us in for the next chapter meeting! This will be an informal gathering, and if you have
- [30th Annual International Research Congress on FSHD](https://www.fshdsociety.org/event/30th-annual-international-research-congress-on-fshd/) - SAVE THE DATE! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. With the recent
- [FSHD Radio: Hot off the Press](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-february-2023/) - Thursday, February 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023-2-2/) - 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will
- [FSHD University: FORTITUDE A Phase 1/2 Clinical Trial of AOC 1020 in Adults with FSHD](https://www.fshdsociety.org/event/fshd-university-aviditys-fortitude-phase-2-clinical-trial/) - Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound
- [Feeling Fit with FSHD: postural changes](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-09/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today's session. Posture changes are normal for people living with FSHD. They are caused
- [Feeling Fit with FSHD: Postural Changes Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23-2/) - 18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We can revisit some exercises to discuss in more detail. We all move
- [FSHD University - Rita Perlingeiro on stem cell research](https://www.fshdsociety.org/event/fshd-university-rita-perlingeiro-on-stem-cell-research/) - 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling lineage-specific differentiation of
- [Tampa Chapter Meeting](https://www.fshdsociety.org/event/tampa-chapter-meeting-3/) - Dear Friends, Please mark your calendars for a get-together in Tampa! We'll be meeting up at the True Food Kitchen, and if the weather is nice enough, we'll enjoy our time together out on the patio. This will be an informal gathering, with no particular agenda - but we'd love to hear your ideas or
- [Feeling Fit with FSHD: Lonwabo's journey Part 2](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2023-01-26/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for Q&A and discussion to follow up on Lonwabo Nene's physical rehab journey. Lonwabo is an active member within the disability awareness sector. He was diagnosed with FSHD at the young age of 15 and ever since,
- [FSHD Radio: Community Profiles](https://www.fshdsociety.org/event/fshd-radio-community-profiles-february-2023/) - Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio
- [FSHD Radio: Hot off the Press](https://www.fshdsociety.org/event/fshd-radio-hot-off-the-press-january-2023/) - Thursday, January 26th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things
- [East TN Chapter Meeting](https://www.fshdsociety.org/event/east-tn-chapter-meeting/) - We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a casual meeting, but please feel free to bring your questions, thoughts and ideas about anything you’d like to see the group do in 2023! We’re
- [Ontario Virtual Chapter Meeting](https://www.fshdsociety.org/event/ontario-virtual-chapter-meeting-6/) - Saturday, February 25, 2023 10:00am ET Please join us for our first Chapter meeting of 2023! Grab a cup of coffee and join us for a casual discussion and Q&A with other members of our Ontario FSHD Community. Time to reconnect with old friends. meet new ones, and help us plan for the year. Hope
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-06-22/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-07-13/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-05-25/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-06-08/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-04-27/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-05-11/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-03-23/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-04-13/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-02-23/2023-03-09/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [CarePartner Hour: What are your "needs"?](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2023-01-31/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came up a few months ago, as we talked about how to decide when one needs professional help for their partner. This conversation leads to how
- [Women on Wellness: Life Hacks](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-02-01/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for shopping for clothing, getting makeup on, selecting shoes, how to do our hair, finding shoes that we want to …and can wear, And MORE! Please
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-09-06/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-10-04/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-07-05/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-08-02/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-05-03/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-06-07/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Women on Wellness](https://www.fshdsociety.org/event/women-on-wellness-2022-08-03-2022-12-07-2023-03-01/2023-04-05/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-12-19/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-11-21/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-10-17/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-09-19/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-08-15/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-07-18/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-06-20/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-05-16/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-04-18/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-03-21/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [Early-Onset Parent Roundtable](https://www.fshdsociety.org/event/early-onset-2023/2023-02-21/) - Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as
- [NYC/NJ Area Virtual Chapter Meeting](https://www.fshdsociety.org/event/nyc-nj-area-virtual-chapter-meeting/) - ​​​​​ Saturday, January 21, 2023 10:00-11:00am Eastern Time Join us via Zoom HERE We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a casual meeting, but please feel free to bring your questions, thoughts and
- [Pacific Northwest's Valentine's Day Cocktails and Clinical Trials](https://www.fshdsociety.org/event/pacific-northwests-valentines-day-cocktails-and-clinical-trials/) - February 11, 2023 2:00pm – 4:30 pm Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you wondered about participating in a trial? Are you involved in a trial? Come join us to discuss the requirements and how you can prepare for
- [Bay Area Chapter Meeting](https://www.fshdsociety.org/event/bay-area-chapter-meeting-4/) - Chapter Meeting Sunday, January 22, 2023 1:00pm - 3:00pm Pacific Time Stanford University, Center for Academic Medicine, Grand Rounds Room 125 453 Quarry Road, Palo Alto, CA 94304 Our January 22, 2023 San Francisco Bay Area Chapter of the FSHD Society will be our Kick Off meeting for 2023. We look forward to seeing everyone
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-12-28/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-11-23/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-12-14/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-10-26/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-11-09/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-09-14/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-09-28/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-08-10/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Feeling Fit with FSHD](https://www.fshdsociety.org/event/feeling-fit-with-fshd-2022-10-13-2022-11-10-2022-12-08-2023-08-24/) - 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-10-25/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-09-27/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-07-26/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-08-23/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-05-24/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-06-28/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-02-22/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-03-22/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2022-04-26/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-12-26/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-10-31/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-11-28/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-07-25/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-08-29/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-09-26/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-05-30/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-06-27/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-03-28/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-04-25/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [CarePartner Hour](https://www.fshdsociety.org/event/sharegiver-hour-2-2022-08-30-2022-11-29-2022-12-27/2023-02-28/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-12-05/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-10-03/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-11-07/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-09-05/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-08-01/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-07-04/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-06-06/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-05-02/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-04-04/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-03-07/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-02-07/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2023-01-03/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-3/2022-12-06/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to
- [FSHD University: What every newly diagnosed person should know](https://www.fshdsociety.org/event/fshd-university-what-every-newly-diagnosed-person-should-know/) - 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT We want to make sure that newcomers to the FSHD community have an opportunity to learn the basics and have their questions answered by a sympathetic expert. And those who have known of their diagnosis for a while may appreciate a
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-12-27/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-11-29/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-10-25/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-09-27/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-08-30/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-07-26/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-05-31/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-06-28/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-04-26/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-03-29/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-02-22/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2023-01-25/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2022-12-28/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [North Texas Virtual Chapter Meeting](https://www.fshdsociety.org/event/north-texas-virtual-chapter-meeting-2/2022-11-30/) - North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click this link to join. Hope to see you
- [CarePartner Hour: Helping with self-care](https://www.fshdsociety.org/event/sharegiver-hour-2/2022-05-31/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical
- [CarePartner Hour: Helping with self-care](https://www.fshdsociety.org/event/sharegiver-hour-2/2022-03-29/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical
- [CarePartner Hour: Helping with self-care](https://www.fshdsociety.org/event/sharegiver-hour-2/2022-02-22/) - 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical
- [Women on Wellness - Transitions in mobility](https://www.fshdsociety.org/event/women-on-wellness/2022-07-06/) - First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t
- [Sharegiver Hour](https://www.fshdsociety.org/event/caregiver-sharegiver-hour/2021-10-26/) - 8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules
- [Sharegiver Hour](https://www.fshdsociety.org/event/caregiver-sharegiver-hour/2020-10-27/) - 8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-01-24/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-02-28/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-03-28/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-04-25/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-05-23/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-06-27/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-07-25/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-08-22/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-09-26/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-10-24/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-11-28/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Chapter virtual monthly meeting](https://www.fshdsociety.org/event/virginia-chapter-virtual-monthly-meeting/2023-12-26/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join
- [Virginia Monthly Meeting](https://www.fshdsociety.org/event/virginia-monthly-meeting/2021-11-23/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking
- [Virginia Monthly Meeting](https://www.fshdsociety.org/event/virginia-monthly-meeting/2021-10-26/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking
- [Virginia Monthly Meeting](https://www.fshdsociety.org/event/virginia-monthly-meeting/2021-09-28/) - Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking
- [Wellness Hour (Virtual Meeting)](https://www.fshdsociety.org/event/wellness-hour-virtual-meeting/2020-09-14/) - This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,

## Categories

- [General](https://www.fshdsociety.org/category/general/)
- [FSHD Research](https://www.fshdsociety.org/category/fshd-research/) - Accelerating scientific discoveries and clinical advancements to develop treatments and a cure for FSHD.
- [Fundraising & Events](https://www.fshdsociety.org/category/fundraising-events/)
- [Media & PR](https://www.fshdsociety.org/category/media-pr/)
- [FSHD Society News](https://www.fshdsociety.org/category/fshds-news/) - Connecting our community through the latest FSHD information on research, newsmakers, and breakthroughs.
- [Living with FSHD](https://www.fshdsociety.org/category/living-with-fshd/)
- [PT and Exercise](https://www.fshdsociety.org/category/living-with-fshd/pt-and-exercise/)
- [Tips and Tricks](https://www.fshdsociety.org/category/living-with-fshd/tips-and-tricks/)
- [Health and Medicine](https://www.fshdsociety.org/category/living-with-fshd/health-and-medicine/)
- [Mental Health](https://www.fshdsociety.org/category/living-with-fshd/mental-health/)
- [FSHD History](https://www.fshdsociety.org/category/fshd-history/)

## Tags

- [Research breakthroughs](https://www.fshdsociety.org/tag/research-breakthroughs/)
- [Video](https://www.fshdsociety.org/tag/video/)
- [Patient support groups](https://www.fshdsociety.org/tag/patient-support-groups/)
- [Prize](https://www.fshdsociety.org/tag/prize/)
- [Science](https://www.fshdsociety.org/tag/science/)
- [PSA](https://www.fshdsociety.org/tag/psa/)
- [FSH](https://www.fshdsociety.org/tag/fsh/)
- [FSH muscular dystrophy](https://www.fshdsociety.org/tag/fsh-muscular-dystrophy/)
- [FSHD](https://www.fshdsociety.org/tag/fshd/)
- [newsletter](https://www.fshdsociety.org/tag/newsletter-2/)
- [scientific grants](https://www.fshdsociety.org/tag/scientific-grants/)
- [patient stories](https://www.fshdsociety.org/tag/patient-stories/)
- [rare disease advocacy](https://www.fshdsociety.org/tag/rare-disease-advocacy/)
- [clinical trials](https://www.fshdsociety.org/tag/clinical-trials/)
- [mouse model](https://www.fshdsociety.org/tag/mouse-model/)
- [charities](https://www.fshdsociety.org/tag/charities/)
- [charity benchmarks](https://www.fshdsociety.org/tag/charity-benchmarks/)
- [Antioxidants](https://www.fshdsociety.org/tag/antioxidants/)
- [Drug screening](https://www.fshdsociety.org/tag/drug-screening/)
- [benefit concert](https://www.fshdsociety.org/tag/benefit-concert/)
- [fundraising events](https://www.fshdsociety.org/tag/fundraising-events-3/)
- [social media](https://www.fshdsociety.org/tag/social-media/)
- [corporate philanthropy](https://www.fshdsociety.org/tag/corporate-philanthropy/)
- [Advocacy](https://www.fshdsociety.org/tag/advocacy/)
- [Fundaising webinar](https://www.fshdsociety.org/tag/fundaising-webinar/)
- [biomedical research](https://www.fshdsociety.org/tag/biomedical-research/)
- [facioscapulohumeral muscular dystrophy](https://www.fshdsociety.org/tag/facioscapulohumeral-muscular-dystrophy/)
- [Celebrities](https://www.fshdsociety.org/tag/celebrities/)
- [Fundraising masterclass](https://www.fshdsociety.org/tag/fundraising-masterclass/)
- [patient meetings](https://www.fshdsociety.org/tag/patient-meetings-2/)
- [awareness campaigns](https://www.fshdsociety.org/tag/awareness-campaigns/)
- [Living with FSHD](https://www.fshdsociety.org/tag/living-with-fshd/)
- [Sports and FSHD](https://www.fshdsociety.org/tag/sports-and-fshd/)
- [american ninja warrior](https://www.fshdsociety.org/tag/american-ninja-warrior/)
- [world FSHD day](https://www.fshdsociety.org/tag/world-fshd-day/)
- [Castle Rock](https://www.fshdsociety.org/tag/castle-rock/)
- [Chipotle](https://www.fshdsociety.org/tag/chipotle/)
- [CO](https://www.fshdsociety.org/tag/co/)
- [FSH Society](https://www.fshdsociety.org/tag/fsh-society/)
- [Fundraiser](https://www.fshdsociety.org/tag/fundraiser/)
- [Walk & Roll](https://www.fshdsociety.org/tag/walk-roll/)
- [Walk & Roll to Cure FSHD](https://www.fshdsociety.org/tag/walk-roll-to-cure-fshd/)
- [Castle Rock CO](https://www.fshdsociety.org/tag/castle-rock-co/)
- [Fundraiser Sponsor](https://www.fshdsociety.org/tag/fundraiser-sponsor/)
- [Walk and Roll](https://www.fshdsociety.org/tag/walk-and-roll/)
- [CFC](https://www.fshdsociety.org/tag/cfc/)
- [Combined Federal Campaign](https://www.fshdsociety.org/tag/combined-federal-campaign/)
- [Sustaining member](https://www.fshdsociety.org/tag/sustaining-member/)
- [workplace giving](https://www.fshdsociety.org/tag/workplace-giving/)
- [Atlanta](https://www.fshdsociety.org/tag/atlanta/)
- [Appalachian Trail](https://www.fshdsociety.org/tag/appalachian-trail/)
- [carden wyckoff](https://www.fshdsociety.org/tag/carden-wyckoff/)
- [piggybackadventures](https://www.fshdsociety.org/tag/piggybackadventures/)
- [spencer wyckoff](https://www.fshdsociety.org/tag/spencer-wyckoff/)
- [Belinda Miller](https://www.fshdsociety.org/tag/belinda-miller/)
- [FSH Clinical Trial Research Network](https://www.fshdsociety.org/tag/fsh-clinical-trial-research-network/)
- [FSHD Society](https://www.fshdsociety.org/tag/fshd-society/)
- [#AskTheResearcher](https://www.fshdsociety.org/tag/asktheresearcher/)
- [Patient Connect](https://www.fshdsociety.org/tag/patient-connect/)
- [#ShareYourVictory](https://www.fshdsociety.org/tag/shareyourvictory/)
- [#CureFSHD](https://www.fshdsociety.org/tag/curefshd/)
- [Cicada Club](https://www.fshdsociety.org/tag/cicada-club/)
- [FSHLIVE](https://www.fshdsociety.org/tag/fshlive/)
- [Ghostly Gala](https://www.fshdsociety.org/tag/ghostly-gala/)
- [Max Adler](https://www.fshdsociety.org/tag/max-adler/)
- [Wendy Liebman](https://www.fshdsociety.org/tag/wendy-liebman/)
- [#GivingTuesday](https://www.fshdsociety.org/tag/givingtuesday/)
- [Ask the PT](https://www.fshdsociety.org/tag/ask-the-pt/)
- [Julie Hershberg](https://www.fshdsociety.org/tag/julie-hershberg/)
- [Physical Therapy](https://www.fshdsociety.org/tag/physical-therapy/)
- [PT](https://www.fshdsociety.org/tag/pt/)
- [braces](https://www.fshdsociety.org/tag/braces/)
- [Exercise](https://www.fshdsociety.org/tag/exercise/)
- [Myofascial Release](https://www.fshdsociety.org/tag/myofascial-release/)
- [lordosis](https://www.fshdsociety.org/tag/lordosis/)
- [strength training](https://www.fshdsociety.org/tag/strength-training/)
- [whiplash](https://www.fshdsociety.org/tag/whiplash/)
- [inversion table](https://www.fshdsociety.org/tag/inversion-table/)
- [trigger points](https://www.fshdsociety.org/tag/trigger-points/)
- [CBT](https://www.fshdsociety.org/tag/cbt/)
- [Cognitive-Behavioral Therapy](https://www.fshdsociety.org/tag/cognitive-behavioral-therapy/)
- [Research](https://www.fshdsociety.org/tag/research/)
- [Biomarkers](https://www.fshdsociety.org/tag/biomarkers/)
- [Doris Leung](https://www.fshdsociety.org/tag/doris-leung/)
- [FSHD Research](https://www.fshdsociety.org/tag/fshd-research/)
- [Johns Hopkins](https://www.fshdsociety.org/tag/johns-hopkins/)
- [Kennedy Krieger Institute](https://www.fshdsociety.org/tag/kennedy-krieger-institute/)
- [Research studies](https://www.fshdsociety.org/tag/research-studies/)
- [Careers](https://www.fshdsociety.org/tag/careers/)
- [CEO](https://www.fshdsociety.org/tag/ceo/)
- [Denver](https://www.fshdsociety.org/tag/denver/)
- [Denver FSHers](https://www.fshdsociety.org/tag/denver-fshers/)
- [Jeffrey Statland](https://www.fshdsociety.org/tag/jeffrey-statland/)
- [Matthew Wicklund](https://www.fshdsociety.org/tag/matthew-wicklund/)
- [patient meeting](https://www.fshdsociety.org/tag/patient-meeting/)
- [FSHD Cycling](https://www.fshdsociety.org/tag/fshd-cycling/)
- [fundraising](https://www.fshdsociety.org/tag/fundraising/)
- [George Pollock](https://www.fshdsociety.org/tag/george-pollock/)
- [RAAM](https://www.fshdsociety.org/tag/raam/)
- [Race Across America](https://www.fshdsociety.org/tag/race-across-america/)
- [Apabetalone](https://www.fshdsociety.org/tag/apabetalone/)
- [BET Inhibitors](https://www.fshdsociety.org/tag/bet-inhibitors/)
- [Fran Sverdrup](https://www.fshdsociety.org/tag/fran-sverdrup/)
- [Reserverlogix](https://www.fshdsociety.org/tag/reserverlogix/)
- [Accessibility Hacks](https://www.fshdsociety.org/tag/accessibility-hacks/)
- [Mobility](https://www.fshdsociety.org/tag/mobility/)
- [Paul Shay](https://www.fshdsociety.org/tag/paul-shay/)
- [Diane Pappas](https://www.fshdsociety.org/tag/diane-pappas/)
- [Lexi Pappas](https://www.fshdsociety.org/tag/lexi-pappas/)
- [Muscular Dystrophy News](https://www.fshdsociety.org/tag/muscular-dystrophy-news/)
- [FSH Watch](https://www.fshdsociety.org/tag/fsh-watch/)
- [Acceleron](https://www.fshdsociety.org/tag/acceleron/)
- [ACE-083](https://www.fshdsociety.org/tag/ace-083/)
- [Jia-Ray Yu](https://www.fshdsociety.org/tag/jia-ray-yu/)
- [Matthew Harms](https://www.fshdsociety.org/tag/matthew-harms/)
- [New York](https://www.fshdsociety.org/tag/new-york/)
- [corporate matching](https://www.fshdsociety.org/tag/corporate-matching/)
- [double your donation](https://www.fshdsociety.org/tag/double-your-donation/)
- [matching gift](https://www.fshdsociety.org/tag/matching-gift/)
- [Sunitinib](https://www.fshdsociety.org/tag/sunitinib/)
- [Orange Slice Smile](https://www.fshdsociety.org/tag/orange-slice-smile/)
- [Raise Awareness](https://www.fshdsociety.org/tag/raise-awareness/)
- [DIR](https://www.fshdsociety.org/tag/dir/)
- [Donor Impact Report](https://www.fshdsociety.org/tag/donor-impact-report/)
- [Matching Donations](https://www.fshdsociety.org/tag/matching-donations/)
- [Spring Campaign](https://www.fshdsociety.org/tag/spring-campaign/)
- [Spring Matching Campaign](https://www.fshdsociety.org/tag/spring-matching-campaign/)
- [accessibility](https://www.fshdsociety.org/tag/accessibility/)
- [grab bars](https://www.fshdsociety.org/tag/grab-bars/)
- [stairlift](https://www.fshdsociety.org/tag/stairlift/)
- [toilet frame](https://www.fshdsociety.org/tag/toilet-frame/)
- [Cure FSHD Gala](https://www.fshdsociety.org/tag/cure-fshd-gala/)
- [IRC](https://www.fshdsociety.org/tag/irc/)
- [Geoge Pollock](https://www.fshdsociety.org/tag/geoge-pollock/)
- [car donation](https://www.fshdsociety.org/tag/car-donation/)
- [donate your car](https://www.fshdsociety.org/tag/donate-your-car/)
- [giving](https://www.fshdsociety.org/tag/giving/)
- [vehicle donation](https://www.fshdsociety.org/tag/vehicle-donation/)
- [vehicles for charity](https://www.fshdsociety.org/tag/vehicles-for-charity/)
- [Grassroots](https://www.fshdsociety.org/tag/grassroots/)
- [Thanksgiving](https://www.fshdsociety.org/tag/thanksgiving/)
- [End of Year](https://www.fshdsociety.org/tag/end-of-year/)
- [Watch Newsletter](https://www.fshdsociety.org/tag/watch-newsletter/)
- [Webinar](https://www.fshdsociety.org/tag/webinar/)
- [FSH Society Chapter Program](https://www.fshdsociety.org/tag/fsh-society-chapter-program/)
- [Volunteer Leader](https://www.fshdsociety.org/tag/volunteer-leader/)
- [Chapter Program](https://www.fshdsociety.org/tag/chapter-program/)
- [Chicagoland](https://www.fshdsociety.org/tag/chicagoland/)
- [DUX4](https://www.fshdsociety.org/tag/dux4/)
- [Chapter Meeting](https://www.fshdsociety.org/tag/chapter-meeting/)
- [FSHD Radio](https://www.fshdsociety.org/tag/fshd-radio/)
- [education](https://www.fshdsociety.org/tag/education/)
- [losmapimod](https://www.fshdsociety.org/tag/losmapimod/)
- [early-onset](https://www.fshdsociety.org/tag/early-onset/)
- [colorado chapter](https://www.fshdsociety.org/tag/colorado-chapter/)
- [fundaiser](https://www.fshdsociety.org/tag/fundaiser/)
- [Project Mercury](https://www.fshdsociety.org/tag/project-mercury/)
- [FSHD University](https://www.fshdsociety.org/tag/fshd-university/)
- [Team Captain](https://www.fshdsociety.org/tag/team-captain/)
- [Sacramento](https://www.fshdsociety.org/tag/sacramento/)
- [California](https://www.fshdsociety.org/tag/california/)
- [Good Bad Things](https://www.fshdsociety.org/tag/good-bad-things/)
- [Danny Kurtzman](https://www.fshdsociety.org/tag/danny-kurtzman/)
- [Shane Stanger](https://www.fshdsociety.org/tag/shane-stanger/)
- [FSHD film](https://www.fshdsociety.org/tag/fshd-film/)
- [FSHD movie](https://www.fshdsociety.org/tag/fshd-movie/)
- [Connecticut](https://www.fshdsociety.org/tag/connecticut/)
- [CenTex](https://www.fshdsociety.org/tag/centex/)
- [Texas](https://www.fshdsociety.org/tag/texas/)
- [Colorado](https://www.fshdsociety.org/tag/colorado/)
- [Idaho](https://www.fshdsociety.org/tag/idaho/)
- [Utah](https://www.fshdsociety.org/tag/utah/)
- [Nevada](https://www.fshdsociety.org/tag/nevada/)
- [British Columbia](https://www.fshdsociety.org/tag/british-columbia/)
- [Vancouver](https://www.fshdsociety.org/tag/vancouver/)
- [FSHD Canada Foundation](https://www.fshdsociety.org/tag/fshd-canada-foundation/)
- [San Diego](https://www.fshdsociety.org/tag/san-diego/)
- [San Diego Walk & Roll](https://www.fshdsociety.org/tag/san-diego-walk-roll/)
- [international](https://www.fshdsociety.org/tag/international/)
- [livestream](https://www.fshdsociety.org/tag/livestream/)
- [putting for a cure](https://www.fshdsociety.org/tag/putting-for-a-cure/)
- [golf](https://www.fshdsociety.org/tag/golf/)
- [Drum & Roll](https://www.fshdsociety.org/tag/drum-roll/)
- [Alberta](https://www.fshdsociety.org/tag/alberta/)
- [Fulcrum](https://www.fshdsociety.org/tag/fulcrum/)
- [REACH Trial](https://www.fshdsociety.org/tag/reach-trial/)
- [fshduniversity](https://www.fshdsociety.org/tag/fshduniversity/)
- [Newly Diagnosed](https://www.fshdsociety.org/tag/newly-diagnosed/)
- [Find a Doctor](https://www.fshdsociety.org/tag/find-a-doctor/)
- [Alternative Therapies](https://www.fshdsociety.org/tag/alternative-therapies/)
- [Care Partner](https://www.fshdsociety.org/tag/care-partner/)
- [Families](https://www.fshdsociety.org/tag/families/)
- [Stories](https://www.fshdsociety.org/tag/stories/)
- [Social Support](https://www.fshdsociety.org/tag/social-support/)
- [Relationships](https://www.fshdsociety.org/tag/relationships/)
- [Adaptations](https://www.fshdsociety.org/tag/adaptations/)
- [Drug Development](https://www.fshdsociety.org/tag/drug-development/)
- [Events](https://www.fshdsociety.org/tag/events/)
- [Sports](https://www.fshdsociety.org/tag/sports/)
- [Basic Research](https://www.fshdsociety.org/tag/basic-research/)
- [Clinical Research](https://www.fshdsociety.org/tag/clinical-research/)
- [Research Motivation](https://www.fshdsociety.org/tag/research-motivation/)
- [BetterLife FSHD](https://www.fshdsociety.org/tag/betterlife-fshd/)
- [basic](https://www.fshdsociety.org/tag/basic/)
- [Teens](https://www.fshdsociety.org/tag/teens/)
- [Anxiety](https://www.fshdsociety.org/tag/anxiety/)
- [Depression](https://www.fshdsociety.org/tag/depression/)
- [Breathing Problems](https://www.fshdsociety.org/tag/breathing-problems/)
- [Early Onset or Infatile](https://www.fshdsociety.org/tag/early-onset-or-infatile/)
- [Genetic Testing](https://www.fshdsociety.org/tag/genetic-testing/)
- [Heart Health](https://www.fshdsociety.org/tag/heart-health/)
- [Lung Health](https://www.fshdsociety.org/tag/lung-health/)

## Library Categories

- [Living with FSHD](https://www.fshdsociety.org/library_category/living-with-fshd/)
- [Medical](https://www.fshdsociety.org/library_category/medical/)
- [Wellness](https://www.fshdsociety.org/library_category/wellness/)
- [Mental Health](https://www.fshdsociety.org/library_category/mental-health/)
- [Research](https://www.fshdsociety.org/library_category/research/)
- [FSHD Society Information](https://www.fshdsociety.org/library_category/fshd-society-information/)
- [Media Type](https://www.fshdsociety.org/library_category/media-type/)

## Library Tags

- [Ableism](https://www.fshdsociety.org/library_tag/ableism/)
- [Adaptations](https://www.fshdsociety.org/library_tag/adaptations/)
- [Advocacy](https://www.fshdsociety.org/library_tag/advocacy/)
- [Bathroom](https://www.fshdsociety.org/library_tag/bathroom/)
- [Care Partner](https://www.fshdsociety.org/library_tag/care-partner/)
- [Children](https://www.fshdsociety.org/library_tag/children/)
- [Disability Benefits](https://www.fshdsociety.org/library_tag/disability-benefits/)
- [Disability Rights](https://www.fshdsociety.org/library_tag/disability-rights/)
- [Education](https://www.fshdsociety.org/library_tag/education/)
- [Fall Prevention](https://www.fshdsociety.org/library_tag/fall-prevention/)
- [Families](https://www.fshdsociety.org/library_tag/families/)
- [Finances](https://www.fshdsociety.org/library_tag/finances/)
- [Home Renovation](https://www.fshdsociety.org/library_tag/home-renovation/)
- [Insurance](https://www.fshdsociety.org/library_tag/insurance/)
- [Mobility](https://www.fshdsociety.org/library_tag/mobility/)
- [Newly Diagnosed](https://www.fshdsociety.org/library_tag/newly-diagnosed/)
- [Scooters](https://www.fshdsociety.org/library_tag/scooters/)
- [Seniors](https://www.fshdsociety.org/library_tag/seniors/)
- [Social Support](https://www.fshdsociety.org/library_tag/social-support/)
- [Stories](https://www.fshdsociety.org/library_tag/stories/)
- [Teens](https://www.fshdsociety.org/library_tag/teens/)
- [Travel](https://www.fshdsociety.org/library_tag/travel/)
- [Walkers](https://www.fshdsociety.org/library_tag/walkers/)
- [Wheelchairs](https://www.fshdsociety.org/library_tag/wheelchairs/)
- [Women](https://www.fshdsociety.org/library_tag/women/)
- [Young Adults](https://www.fshdsociety.org/library_tag/young-adults/)
- [Anesthesia](https://www.fshdsociety.org/library_tag/anesthesia/)
- [Back Weakness](https://www.fshdsociety.org/library_tag/back-weakness/)
- [Bone Health](https://www.fshdsociety.org/library_tag/bone-health/)
- [Breathing Problems](https://www.fshdsociety.org/library_tag/breathing-problems/)
- [Chest Weakness](https://www.fshdsociety.org/library_tag/chest-weakness/)
- [Coat's Disease](https://www.fshdsociety.org/library_tag/coats-disease/)
- [Dry Eyes](https://www.fshdsociety.org/library_tag/dry-eyes/)
- [Early Onset or Infatile](https://www.fshdsociety.org/library_tag/early-onset-or-infatile/)
- [Facial Weakness](https://www.fshdsociety.org/library_tag/facial-weakness/)
- [Fatigue](https://www.fshdsociety.org/library_tag/fatigue/)
- [Find a Doctor](https://www.fshdsociety.org/library_tag/find-a-doctor/)
- [Foot Drop](https://www.fshdsociety.org/library_tag/foot-drop/)
- [Forearm and Hand Weakness](https://www.fshdsociety.org/library_tag/forearm-and-hand-weakness/)
- [Gastrointestinal Problems](https://www.fshdsociety.org/library_tag/gastrointestinal-problems/)
- [Genetic Counseling](https://www.fshdsociety.org/library_tag/genetic-counseling/)
- [Genetic Testing](https://www.fshdsociety.org/library_tag/genetic-testing/)
- [Hearing Loss](https://www.fshdsociety.org/library_tag/hearing-loss/)
- [Heart Health](https://www.fshdsociety.org/library_tag/heart-health/)
- [Hip and Upper Leg Weakness](https://www.fshdsociety.org/library_tag/hip-and-upper-leg-weakness/)
- [Lower Leg and Ankle Weakness](https://www.fshdsociety.org/library_tag/lower-leg-and-ankle-weakness/)
- [Lung Health](https://www.fshdsociety.org/library_tag/lung-health/)
- [Medication](https://www.fshdsociety.org/library_tag/medication/)
- [Occupational Therapy](https://www.fshdsociety.org/library_tag/occupational-therapy/)
- [Orthotics](https://www.fshdsociety.org/library_tag/orthotics/)
- [Pain](https://www.fshdsociety.org/library_tag/pain/)
- [Patient Guidelines](https://www.fshdsociety.org/library_tag/patient-guidelines/)
- [Pediatric](https://www.fshdsociety.org/library_tag/pediatric/)
- [Physical Therapy](https://www.fshdsociety.org/library_tag/physical-therapy/)
- [Reproductive Health](https://www.fshdsociety.org/library_tag/reproductive-health/)
- [Scapular Winging](https://www.fshdsociety.org/library_tag/scapular-winging/)
- [Shoulder Weakness](https://www.fshdsociety.org/library_tag/shoulder-weakness/)
- [Sleep Problems](https://www.fshdsociety.org/library_tag/sleep-problems/)
- [Spine Problems](https://www.fshdsociety.org/library_tag/spine-problems/)
- [Urinary Problems](https://www.fshdsociety.org/library_tag/urinary-problems/)
- [Alternative Therapies](https://www.fshdsociety.org/library_tag/alternative-therapies/)
- [Diet and Nutrition](https://www.fshdsociety.org/library_tag/diet-and-nutrition/)
- [Exercise](https://www.fshdsociety.org/library_tag/exercise/)
- [Supplements](https://www.fshdsociety.org/library_tag/supplements/)
- [Anxiety](https://www.fshdsociety.org/library_tag/anxiety/)
- [Counseling](https://www.fshdsociety.org/library_tag/counseling/)
- [Depression](https://www.fshdsociety.org/library_tag/depression/)
- [Lonliness](https://www.fshdsociety.org/library_tag/lonliness/)
- [Meditation](https://www.fshdsociety.org/library_tag/meditation/)
- [Mindfulness](https://www.fshdsociety.org/library_tag/mindfulness/)
- [Self Harm](https://www.fshdsociety.org/library_tag/self-harm/)
- [Basic Research](https://www.fshdsociety.org/library_tag/basic-research/)
- [Clinical Research](https://www.fshdsociety.org/library_tag/clinical-research/)
- [Clinical Trials](https://www.fshdsociety.org/library_tag/clinical-trials/)
- [Drug Development](https://www.fshdsociety.org/library_tag/drug-development/)
- [Research Motivation](https://www.fshdsociety.org/library_tag/research-motivation/)
- [Fundraising](https://www.fshdsociety.org/library_tag/fundraising/)
- [Media Stories](https://www.fshdsociety.org/library_tag/media-stories/)
- [Press Releases](https://www.fshdsociety.org/library_tag/press-releases/)
- [Walk and Roll](https://www.fshdsociety.org/library_tag/walk-and-roll/)
- [Books](https://www.fshdsociety.org/library_tag/books/)
- [Website](https://www.fshdsociety.org/library_tag/website/)
- [Videos](https://www.fshdsociety.org/library_tag/videos/)
- [Magazine](https://www.fshdsociety.org/library_tag/magazine/)
- [Core Weakness](https://www.fshdsociety.org/library_tag/core-weakness/)
- [Communication](https://www.fshdsociety.org/library_tag/communication/)
- [clinical](https://www.fshdsociety.org/library_tag/clinical/)
- [BetterLife FSHD](https://www.fshdsociety.org/library_tag/betterlife-fshd/)
- [Mental Health](https://www.fshdsociety.org/library_tag/mental-health/)
- [Relationships](https://www.fshdsociety.org/library_tag/relationships/)
- [Clinical Trial](https://www.fshdsociety.org/library_tag/clinical-trial/)
- [Tee](https://www.fshdsociety.org/library_tag/tee/)
- [care](https://www.fshdsociety.org/library_tag/care/)
- [Pregnancy](https://www.fshdsociety.org/library_tag/pregnancy/)
- [Adovocacy](https://www.fshdsociety.org/library_tag/adovocacy/)

## Staff Level

- [Senior Management](https://www.fshdsociety.org/staff-level/senior-management/)
- [Board of Directors / Leadership](https://www.fshdsociety.org/staff-level/board-of-directors-leadership/)
- [General Members](https://www.fshdsociety.org/staff-level/general-members/)
- [Emeritus](https://www.fshdsociety.org/staff-level/emeritus/)

## Event Categories

- [Atlanta Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/atlanta-chapter-events/)
- [Member Meetings](https://www.fshdsociety.org/events/category/member-meetings/)
- [Fundraiser](https://www.fshdsociety.org/events/category/fundraiser/)
- [Webinar](https://www.fshdsociety.org/events/category/webinar/)
- [Walk & Roll](https://www.fshdsociety.org/events/category/walk-roll/)
- [Western Pennsylvania Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/western-pennsylvania-chapter-events/)
- [Arizona Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/arizona-chapter-events/)
- [Bay Area Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/bay-area-chapter-events/)
- [Central Coast Florida Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/central-coast-florida-chapter-events/)
- [Chicagoland Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/chicago-land-chapter-events/)
- [Colorado Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/colorado-chapter-events/)
- [Columbus Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/columbus-chapter-events/)
- [Connecticut Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/connecticut-chapter-events/)
- [Daytona Beach Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/daytona-beach-chapter-events/)
- [East Tennessee Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/east-tennessee-chapter-events/)
- [Greater Philadelphia Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/greater-philadelphia-chapter-events/)
- [Kansas City Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/kansas-city-chapter-events/)
- [Los Angeles Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/los-angeles-chapter-events/)
- [Mid Atlantic Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/mid-atlantic-chapter-events/)
- [New England Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/new-england-chapter-events/)
- [New York City Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/new-york-city-chapter-events/)
- [North Carolina Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/north-carolina-chapter-events/)
- [Pacific Northwest Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/pacific-northwest-chapter-events/)
- [Sacramento Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/sacramento-chapter-events/)
- [San Diego Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/san-diego-chapter-events/)
- [Southwest Florida Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/southwest-florida-chapter-events/)
- [St. Louis Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/st-louis-chapter-events/)
- [Tampa Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/tampa-chapter-events/)
- [Utah Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/utah-chapter-events/)
- [Wisconsin Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/wisconsin-chapter-events/)
- [FSHD Radio](https://www.fshdsociety.org/events/category/fshd-radio/)
- [Support Group](https://www.fshdsociety.org/events/category/support-group/)
- [South Carolina Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/south-carolina-chapter-events/)
- [Scientific Meeting](https://www.fshdsociety.org/events/category/scientific-meeting/)
- [Patient Education](https://www.fshdsociety.org/events/category/patient-education/)
- [Research Event](https://www.fshdsociety.org/events/category/research-event/)
- [Idaho Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/idaho-chapter-events/)
- [Zoom Web Conference](https://www.fshdsociety.org/events/category/zoom-web-conference/)
- [Central Texas Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/central-texas-chapter-events/)
- [non-walk fundraising event](https://www.fshdsociety.org/events/category/non-walk-fundraising-event/)
- [FSHD University](https://www.fshdsociety.org/events/category/fshd-university/)
- [Dakotas Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/dakotas-chapter-events/)
- [Minnesota Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/minnesota-chapter-events/)
- [Ontario Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/ontario-chapter-events/)
- [All Chapters](https://www.fshdsociety.org/events/category/all-chapters/) - when a national event is to be tagged for all the local chapters and show up on their local chapter pages (so you don’t have to click them all!
- [NE Florida Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/neflorida-chapter-events/)
- [Parents' Roundtable](https://www.fshdsociety.org/events/category/gathering-place/early-onset/) - Events related to or for families with children who have FSHD
- [FSHD 360](https://www.fshdsociety.org/events/category/fshd-360/)
- [Virginia Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/virginia-chapter-events/)
- [North Texas Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/north-texas-chapter-events/)
- [Gathering Place](https://www.fshdsociety.org/events/category/gathering-place/) - For all our affinity group meetings – Wellness, Sharegiver, W.O.W., GenZ Meet Up, Early-onset Parent Roundtable, Feeling Fit, Young Professionals
- [Feeling Fit with FSHD](https://www.fshdsociety.org/events/category/gathering-place/feeling-fit/)
- [British Columbia Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/britishcolumbia-chapter-events/)
- [Alberta Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/alberta-chapter-events/)
- [Young Adults](https://www.fshdsociety.org/events/category/gathering-place/young-adults/)
- [Women on Wellness](https://www.fshdsociety.org/events/category/gathering-place/women-on-wellness/)
- [Wellness Hour](https://www.fshdsociety.org/events/category/gathering-place/wellness-hour/)
- [Nevada Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/nevada-chapter-events/)
- [Michigan Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/michigan-chapter-events/)
- [Endurance Event](https://www.fshdsociety.org/events/category/fundraiser/endurance-event/)
- [Everything Early Onset](https://www.fshdsociety.org/events/category/gathering-place/everything-early-onset/)
- [New Mexico Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/new-mexico-chapter-events/)
- [Advocacy](https://www.fshdsociety.org/events/category/advocacy/)
- [Quebec Chapter Events](https://www.fshdsociety.org/events/category/all-chapters/quebec-chapter-events/)
- [CarePartner Hour](https://www.fshdsociety.org/events/category/gathering-place/carepartner-hour/)
- [Living Spiritually](https://www.fshdsociety.org/events/category/gathering-place/living-spiritually/)
- [World FSHD Day](https://www.fshdsociety.org/events/category/world-fshd-day/)