Gathering Place

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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.

See the full schedule of upcoming Wellness meetings

Care Partner

Formerly called the Sharegiver Hour, 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 restricting this meeting to caregivers (or “sharegivers,” as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street).

This group meets on the final Tuesday of each month at 8:00pm Eastern/5:00pm Pacific

See the full schedule of upcoming Care Partner meetings

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.

See the full schedule of upcoming Early-onset Parent Roundtable

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

See the full schedule of upcoming WOW meetings
Feeling Fit with FSHD

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.

See the full schedule of upcoming Feeling Fit sessions

Each month we release two episodes: Profiles in FSHD premieres on the second Tuesday and Hot Off the Presses premieres on the fourth Thursday.

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.

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.