Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
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!
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.
2nd Monday of each month at 5:00 pm ET/ 2:00 pm PT
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.
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.
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Final Tuesday of each month at 8:00 pm ET /5:00 pm PT
This monthly 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).
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3rd Tuesday of each month
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 monthly Parents’ 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 — 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.
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First 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.
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3rd Monday: 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.
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2nd Tuesday of the Month 7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT
The Everything Early Onset engages adults of all ages living with early-onset FSHD to 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.
Recently, Everything Early On-Set is opening up the group to teens living with FSHD. If you are a teen, please join us for an adult free space where you can connect with others who’ve gone through your journey and ask any questions you have. Nothing is off limits!
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.
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2nd and 4th Thursday of every month at 12:00 pm ET /9:00 am 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.
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