There is strength in sharing experiences, learning from others, and knowing that you’re not the only one facing these challenges. That’s why The Gathering Place was created!
With the help of incredible volunteer leaders from all over the country—and even around the world—The Gathering Place is a collection of support groups where people with FSHD, their families, and their friends can connect. These groups bring together people who truly understand what it’s like to live with FSHD.
Each month, these groups meet online to share stories, exchange helpful ideas, and learn from one another. It’s a place where you can give and receive support, explore important topics, and gain access to educational resources that can help along the way. More than just a meeting, it’s a community where real friendships are built, and no one has to feel alone.
Find the group—or groups—that feel right for you and your journey. Then, join us each month to connect, learn, and grow together! To see all of our upcoming Gathering Place meetings, just check our calendar!
The Wellness Hour now happens TWICE per month:
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 Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of others with FSHD, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through.
See EventsCheck our Events Calendar for Meeting Updates
This meeting is for those 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).
See Events3rd Tuesday, quarterly in January, April, July, and October
The Parents’ Roundtable & International 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 quarterly Parents’ Roundtable on the 3rd Tuesday of January, April, July, and October, 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 — if 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 EventsFirst Wednesday of every month at 5:00 pm ET/2:00 pm PT
Women on Wellness (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 women.
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.
See Events
3rd Monday every other month: 8:00pm ET/5:00pm PT
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 young adults with FSHD 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.
See Events2nd Thursday of every month at 7:00 pm ET /4:00 pm PT
Feeling Fit with FSHD is for people living with FSHD who are interested in exercise and fitness. 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 EventsLiving Spiritually with FSHD is a Gathering Place group that offers a welcoming space for individuals exploring the connection between faith and life with FSHD. Whether your spiritual journey has been shaped by your diagnosis or your beliefs have influenced how you navigate FSHD, this group invites open conversation, reflection, and support. All beliefs are welcome, including those rooted in religion, spirituality, or simply a sense of something greater than yourself.
Please note, these sessions will not be recorded to give participants the opportunity to speak openly about their personal experiences. Guest presentations may be recorded at the group moderator’s discretion.
See EventsJoanne is a CPA and has been living with the symptoms of FSHD. Her belief in something bigger than herself has given her the faith, hope and love to lead a positive, purposeful, joyful life no matter her circumstances. She participates in many different kinds of communities – all geared to lifting each other up and giving help and hope to those in need.
Michael King was recently diagnosed with FSHD after a long journey of misdiagnosis. He is the North Carolina Chapter Director for the FSHD Society and actively involved with the FSHD community. As a follower of Jesus, he leans on his faith to weather the daily challenges of the disease while trying to find ways to glorify God through his journey. Michael enjoys pursuing his passion for photography, especially when wildlife is his subject, and recently started a new hobby of making homemade ice cream.
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