Location: Shirley Ryan AbilityLab, 355 East Erie Chicago, IL 60611 Deadline to register extended to October 15th! RSVP TODAY! 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... Read More »
We hope to see you on Sunday, October 27th, 2019 at Wilson Park in Torrance, CA! Please feel free to bring a picnic lunch for after the walk! To learn all about our fantastic event - Register, Donate, or become a Sponsor - please Click HERE! REGISTER NOW Please reach out to the Chapter Director, Laurie Heyman,... Read More »
Join host Tim Hollenback on October 30, 2019 on Facebook Live for a conversation with the fantastic Alan Brown. Originally scheduled for July 31, the show had to be rescheduled due to technical difficulties. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and... Read More »
New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the Meeting Flyer Download the 2019 NYC FSHD Family Day Agenda Join us for our first-ever New York City FSHD Family Day Conference to meet top researchers,... Read More »
Please join us for a spectacular fundraising event in honor of Zachary Phillips! We are raising funds for treatments and a CURE for FSH Muscular Dystrophy. Live auction, car show, raffles, door prizes, music, food & more!!! $10 Wristband fee (covers food plate) Motorcycles: Meet at noon at “House Divided”: 1659 Woodruff Road, Greenville, SC... Read More »
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made... Read More »
#GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. 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 raise worldwide awareness of... Read More »
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process,... Read More »
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing.... Read More »
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research... Read More »
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how... Read More »
Justin and his family at the Magic Kingdom. 9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. "It was a blow to be told... Read More »
Join our new South Carolina Chapter Director, Frank Hanley, to celebrate the launch of this new FSHD Society Chapter! We would like to get to know one another, brainstorm future Chapter activities, and get updates from the FSHD Society. Anna Gilmore (Regional Director) will be on-hand to answer any questions you may have. For those... Read More »
Julie Cohen, MSc, genetic counselor 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community.... Read More »
Tim Hollenback, FSHD Radio host 6:00 PM ET | 5:00 PM CT | 4:00 PM MT | 3:00 PM PT Call-in number: (262) 422-6369 Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of... Read More »
Lynn Stevens 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar.... Read More »
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community.... Read More »
Thanks to the diligent efforts of our program committee, we have reconfigured this year’s FSHD International Research Congress into a two-day online conference, to take place on June 25-26. This year’s congress will feature keynote talks and research presentations not readily available anywhere else. While the congress will be virtual, there will be plenty of... Read More »
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
UPDATE: Our community’s health and well-being are our highest priority, and so due to the risks posed by COVID-19, particularly to people with FSHD, we have rescheduled the Voice of the Patient Forum for June 29, 2020, as an online meeting. Everyone who is currently registered will be automatically re-registering for the June 29 virtual... Read More »
Tim Hollenback, FSHD Radio host 12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community.... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you’ll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends... Read More »
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to... Read More »
The National Virtual 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, these events take place all over the nation. Find your local Walk & Roll HERE! No local Chapter-Led Walk & Roll near you? Don't worry! You can still... Read More »
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,... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Kathryn Wagner, MD PhD Kathryn Wagner, MD PhD, has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the... Read More »
This month's webinar presenter is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. Molly brings a unique perspective on the impact of the FSHD community's role in therapy development. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people... Read More »
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... Read More »
Russell Butterfield, MD PhD November 19th, 2020: 1:00PM ET This month's webinar shines a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended... Read More »
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. Join us today for 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 will conduct nonstop interviews from 8:00 a.m. to 10:00 p.m.... Read More »
3:00 pm ET | 2:00 pm CT | 1:00 pm MT | 12:00 pm PT. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck... Read More »
Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT As we close out the year, we'll gather to share companionship and conversation. What has the past year been like for you? How are you handling the holidays? What are you doing to take care of yourself? How can this group... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We refer often to MRI (magnetic resonance imaging) as an almost magical way to peer inside the body and see what's going on with our muscles. MRI is a key component of Fulcrum's ReDUX4 clinical trial for FSH muscular dystrophy.... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We are rebranding this virtual meeting from "Sharegiver Hour" to "Family Hour" in recognition of the fact that many family members are not directly providing care. But FSHD affects the whole family. This monthly meeting is for everyone who has loved... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Early onset FSHD: How different is it? Tina Duong, MPT While individuals with FSH muscular dystrophy are typically diagnosed in the late teen or adult years, many recall having subtle symptoms during childhood that went unnoticed. However, an estimated 10%... Read More »
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... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this month’s FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a... Read More »
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. To spark discussion, we're recommending this short article in Time magazine: How to Help a Caregiver Without Saying Stay Positive. Don't worry if you don't have time to read it. Join us anyway!... Read More »
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). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT LISTEN HERE Note: our original program featuring the FSHD Society's Jamshid Arjomand, PhD, chief science officer, has been postponed until later this year. Instead, we are delighted to welcome Rabbi Haviva Ner-David, a long-time member of the FSHD Society whose... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Learning, discovering and testing: a researcher’s journey into FSHD Angela Lek, PhD, will share her scientific journey as an FSHD researcher. Her work is focused on understanding the molecular circuits Dr. Angela Lek that are perturbed in response to DUX4... Read More »
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... Read More »
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,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Many individuals diagnosed with FSHD feel that they are unemployable or they should just give up and file for disability benefits. Lynn Stevens will talk about employment fallacies, assistive devices that can help you remain employed, career change strategies and... Read More »
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... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your... Read More »
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). This month we will talk about transitions, which are an inevitable fact of life for anyone living with a progressive condition like... Read More »
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,... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes... Read More »
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics 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 gene and slow the progression of... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. What do these results mean, and how are you and your loved ones with FSHD processing the information? This monthly... Read More »
This month, we'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. For many of us, this news is top of mind, so we want to provide the space to discuss the study and share how we are feeling and processing the information. Our... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show guest is Heloise Hoffmann, who is not only the director of our Southwest Florida chapter and author of a new research paper on sleep and FSHD, but she is also a member of the team of... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We’ve all heard how important a well-tailored exercise program is for people with FSH muscular dystrophy. This is easier said than done, especially if you have difficulty standing up or worry about falling during exercise. In today’s webinar, Dr. Nikia... Read More »
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. This month, we have... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for 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). Each month, we'll have a conversation... Read More »
Team Captain Rally | Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this presentation, Heloise Hoffmann will share her work 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... Read More »
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. This month, June Kinoshita,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Note: we have changed the date to September 7 for this month only. Tonight's featured guest is our National Walk & Roll Ambassador, actor Max Adler, who will be talking about his FSHD advocacy and this year's Walk & Roll.... Read More »
Join us this month for a conversation on a subject that most people with FSHD are all too familiar with--fatigue. When does it hit you? How do you cope when it happens? How do you avoid it? And how does fatigue and the frustration and sadness of not having the energy to do your work... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference... Read More »
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... Read More »
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... Read More »
5:00 pm US ET | 4:00 pm US CT | 3:00 pm US MT | 2:00 pm US PT Use the World Clock time converter to figure out your local time Follow GenZ of FSHD on Instagram After launching “GenZ of FSHD,” a social media-based group for teens and young adults in the FSHD community,... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, FSHD Society member Donna Russo will start things off with a 15-minute chair yoga session. This will be a great way to get your body activated and start a conversation about self-care. Our monthly Zoom meeting on Wellness... Read More »
Tuesday, October 12 Ally Roets & her son Sam. 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and Jacinda Sampson, MD PhD, of Stanford University Medical Center. Drs. Vincenten and Voermans recently co-wrote an article on FSHD genetics and reproductive counseling, together with... Read More »
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... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Matt Beke, University of Florida Food is essential to our health and is also laden with a lot of emotional freight, both good and bad (especially as we head into holiday season!). This month, we've invited Matt Beke, a clinical... Read More »
Tuesday, November 9 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests is our chief science officer, Jamshid Arjomand, PhD! He'll be sharing the latest and greatest in FSHD research, including news from the Clinical Trial Research Network investigators meeting that just happened last week in... Read More »
12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Jeffrey Statland, MD Our speaker this month is Jeffrey Statland, MD, co-director of the FSHD Clinical Trial Research Network and professor of neurology at the University of Kansas Medical Center. Dr. Statland has his finger on the pulse of all... Read More »
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 30th, we will celebrate with an all-day Radiothon event with FSHD Radio. Our amazing host, Tim Hollenback, will hold four hour-long sessions live on Facebook. Tune in... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Matt Beke, University of Florida We’ve invited Matt Beke, a clinical dietician at the Fixel Center for Neurological Diseases at the University of Florida, to join us this evening to talk about food, health, and self-care. Matt is a Registered Dietitian... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will lead us through a brief introduction and exercise in Mindfulness. Then we'll break up into smaller conversation groups so everyone will have a chance to... Read More »
Tuesday, December 14 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month’s guests will be Sam Ray, a 15-year-old, in Tucson, AZ, who is living with Early-onset FSHD. Sam will talk with Tim about how his FSHD motivated him to explore exoskeleton technology, and fostered his love... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Bob Meier, CO Bob Meier, certified orthotist, is back to present on a topic that is not uncommon in people with FSHD: knee hyperextension. During walking, certain muscles are activated so that the human knee never even reaches full or... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT As we close out the year, we'll gather to share companionship and conversation. What has the past year been like for you? How are you handling the holidays? What are you doing to take care of yourself? How can this group... Read More »
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. The topic this month was suggested by a woman with FSHD who was planning to have a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about what to think about when choosing a power scooter or wheelchair. We'll be joined by Ray Jordan, Cyndi Segroves, and Amy Bekier, all highly experienced in this topic. They've done their homework and... Read More »
Tuesday, January 11th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »
Tuesday, January 18th 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... Read More »
