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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 RSVP Here
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 […]
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 […]
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 […]
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 […]
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, […]
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, […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
This is a gathering meeting for the NY/NJ Chapter. Agenda will primarily focus on interaction and collaboration. RSVP: Chapter Meeting RSVP
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. <p data-pm-slice="1 1 Register Now
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 […]
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 Register Now
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 […]
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 […]
Join the Chicago chapter for a virtual meeting! <p data-pm-slice="1 1 Register Now
Join us for a Bay Area Chapter Meeting! Please RSVP for the meeting location or zoom link details. RSVP Here
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 […]
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 […]
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 […]
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. <p data-pm-slice="1 1 Register Now
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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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: <p data-pm-slice="1 1 Register Now
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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. Register Now Living Spiritually with FSHD […]
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 […]
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 […]
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 […]
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 […]
We’d love to see you (in person)! We will have light refreshments and good conversations! <p data-pm-slice="1 1 Register Now
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. Register Now
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 […]
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. Register Now
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 […]
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 […]
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 […]
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 […]
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 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 […]
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. <p data-pm-slice="1 1 Register Now
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! Register Now
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 […]
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 Register Now
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 Register Now
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 […]
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 […]
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! Register Now
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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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
Join us for the 2026 International Research Congress on FSHD June 25-26 in Chicago Register Now Submit Your Abstract 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 […]
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 Register Now Join us in Rosemont, IL (the Greater Chicago area) for the 2026 FSHD Connect Conference—our biennial global gathering dedicated to […]
**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 […]
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 […]
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 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. Register Now
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, […]
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