No one should have to walk the FSHD journey alone and there can be great strength in shared experiences. With this in mind, the FSHD Society, in partnership with amazing volunteer leaders from across the country - and across the globe! - has formed several groups that bring together patients, family members, and friends who are walking similar paths.
Targeted groups gather each month to share experiences, exchange ideas, offer support, and gain insights. Find the group - or groups - that appeal to you and fit where you are in your FSHD journey, then join the group and meet us online each month.
Once you join a group by submitting your RSVP for a meeting, you will not need to register for each month’s meeting. You will automatically receive monthly reminders and call-in/Zoom information. You may change your group membership at any time by following the opt-out button at the bottom of the monthly reminder email.
Wellness Hour
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 whatever you may be going through.
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 other directions, that’s OK! We hope you’ll drop by to enjoy the company of some of the wonderful people in our community.
Early-onset Parents Roundtable
The Early-onset 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 FSHD families wherever they may be.
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 have plenty of time for parents to exchange ideas and ask/answer questions from other parents. We’d love your thoughts and participation. Wherever you are on this journey - you have a young child who was just diagnosed or they're fully grown - please join us and bring your ideas, questions, answers, and tips and tricks.
Women on Wellness
Women on Wellness, or W.O.W., 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 to discuss with other females.
Our group is hosted and facilitated by a group of volunteers. We may suggest articles and conversation-starters to get each meeting going, but this is truly your space to share what’s on your mind.
W.O.W. meets First Wednesday of every month at 5:00 pm ET/2:00 pm PT
Young Adults
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 just graduating, starting a new position, or already on a career track, the FSHD Young Adults group will help you develop a valuable network of friends facing similar challenges.
Our group is hosted and facilitated by volunteers who are excited to connect with you. We meet twice a month via Zoom. One will focus on hearing from a professional on a focused topic, with time for Q&A/discussion; the other will a social hour with a focus on conversation, connection, and fun. Join both meetings or just one, as your schedule allows.
Mark your calendar for third Monday: 8:00pm ET/5:00pm PT. Once you join the group, no need to register again; you will be sent regular reminders and the Zoom link.
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT
Everything Early Onset
2nd Tuesday of the Month
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm 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, build friendships, and share valuable insights. We hope to offer a mixture of social, educational, and otherwise enriching topics.
Meet our Moderators
Marisa lives with early onset FSHD and has been a power wheelchair user since age 22. She is a strong advocate for disability justice, obtained her ADA Coordinator certification in 2023, and currently works for her state’s Protection & Advocacy agency helping her disabled community access employment. She enjoys sharing her knowledge and her story on her YouTube and Instagram “Disabled in Nature”. Marisa lives in South East Michigan with her husband, dog, and vegetable garden.
Archer is a 23 year old with early onset FSHD. They like to play dungeons and dragons, do crafts, and are on a local power chair soccer team. Archer is a full time powerchair user and is active part of the FSHD Society and general disability community.
Feeling Fit with FSHD
Feeling Fit with FSHD is 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/9:00 am Pacific Time. Come dressed for exercise and have on hand any safety and assistive devices you need.
Our group is hosted by knowledgeable volunteers with a passion for helping those with FSHD live their best life through fitness activities that are accessible to them. Not every exercise is appropriate or safe for every individual, so please use your best judgement and consult your health care provider.
FSHD Straight Talk
Catch new episodes on the second and fourth Tuesday of every month!
You can watch the show on YouTube @FSHDSociety or Facebook @FSHDSociety, or listen at your convenience wherever you like to stream your favorite podcasts. Learn More
FSHD Community on Social Media
Like and Follow us to get the latest news and updates from the FSHD Society, post questions, share information, and share our posts with your network. Join our online community via our Facebook Page.
There are also several volunteer-run private Facebook groups. These groups are private, and posts made on them will not appear on your public Facebook timeline. If you are interested in engaging in these groups, visit them on Facebook and request to join. Their administrator will take it from there.
- FSHD Parents https://www.facebook.com/groups/FSHDParents/
- FSHD Teens/Young Adults https://www.facebook.com/groups/fshdyoungadults/
- FSHD Muscular Dystrophy Support https://www.facebook.com/groups/171010923325780/
- FSHD Carer Support Group https://www.facebook.com/groups/2377644272492342/
Our official Twitter account provides news, event information, and shares Tweets of interest. You can post questions and contact us via our Twitter account.
Patients and families live rich and full lives, regardless of their diagnosis. On our Instagram we highlight and celebrate the indomitable spirit of our FSHD community.
Our official YouTube channel offers education videos that could be of great benefit to patients and families, as well as informational videos about the FSHD Society, event recap videos and more.
Our official Discord server is a place to meet other members of the FSHD Community. Join the server to socialize and chat about anything. You can meet others with similar interests, talk FSHD research, or simply share memes. We have channels for Gen Z and Young Professionals, but all are welcome!
