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.
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.
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, 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
GenZ of FSHD
After launching “GenZ of FSHD,” a social media-based (Instagram) group for teens and young adults in the FSHD community, we’d decided to create an online space to meet. This is a space for our generation to make friends, have fun, and share whatever’s on our minds, as well as offer support and share our stories. We are at a different life stage than older adults and don’t often have the opportunity to get to know peers who are living with FSHD.
If you are a GenZer, we hope you’ll join us for our bi-monthly meet up on Zoom, at 3:00 PM ET /12:00 PM PT. Please register in advance so that we can email the meeting link to you (yes, you will have to check your email!).
If you aren’t in our age demographic, please respect our age limits so that everyone feels comfortable to share. Take advantage of the other amazing groups listed above and 33 local chapters where you can socialize with people of all ages.
Each month we release two episodes: Profiles in FSHD premieres on the second Tuesday and Hot Off the Presses premieres on the fourth Thursday.
FSHD Community on Social Media
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.