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:
每个月我们都会有一个讨论切入主题，但这只是一场非正式的聚会，如果讨论偏离了其他方向也没关系！我们希望你能顺道过来，享受我们社区中一些优秀成员的陪伴。.
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.
Join Our Email ListCheck our Events Calendar for Meeting Updates
本次会议面向照顾患有面肩肱型肌营养不良症（FSHD）亲属的照顾者。这个线上会议是一个安全且充满支持的空间，供您与其他照顾者分享您的经历、面临的挑战以及实用的建议。.
请遵守我们的规则，将本次会议限定为仅限照顾者（或者像艾萨克·普里莱滕斯基所建议的那样称为“分享者”，因为向亲人提供照顾是双向的）。.
Join Our Email List3研发 Tuesday, quarterly in January, April, July, and October
"(《世界人权宣言》) 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 家长圆桌会议 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.
Join Our Email ListFirst 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.
Join Our Email List3研发 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.
Join Our Email List2nd 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.
Join Our Email List“带FSHD过有灵性的生活”（Living Spiritually with FSHD）是“聚集地”（Gathering Place）的一个小组，为探索信仰与面肩肱型肌营养不良症（FSHD）生活之间联系的个人提供了一个温馨的空间。无论你的精神之旅是由你的确诊所塑造的，还是你的信仰影响了你应对FSHD的方式，该小组都欢迎开放的对话、反思和支持。我们欢迎所有信仰，包括那些植根于宗教、灵性或单纯超越自我的信念。.
请注意，这些会议将不予录制，以便参与者有机会畅所欲言地分享他们的个人经历。嘉宾演讲可能会由群组主持人决定是否进行录制。.
Join Our Email List琼安是一名注册会计师，一直带病（面肩肱型肌营养不良症，简称FSHD）生活。她对某种高于自身的伟大信仰赋予了她信念、希望和爱，使她无论身处何种境遇，都能过上积极、有目标、充满快乐的生活。她参与了许多不同类型的社群——所有这些社群都旨在互相激励，并向需要帮助的人给予援助与希望。.
在经历了一段漫长的误诊历程后，迈克尔·金（Michael King）最近被确诊患有面肩肱型肌营养不良症（FSHD）。他是FSHD协会北卡罗来纳州分会的主任，积极参与FSHD社群的活动。作为一名耶稣的追随者，他依靠自己的信仰来应对这种疾病带来的每日挑战，同时努力寻找在这一历程中荣耀上帝的方法。迈克尔热衷于追求对摄影的热情，尤其是以野生动物为拍摄对象，最近他还开始了一个制作自制冰淇淋的新爱好。.
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