To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other contents are designed to empower individuals to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Lynn Stevens from Goodwill Industries of Northern Louisiana gave a superb webinar sharing much valuable information for anyone with a disability about resources to help people find and keep gainful employment. For anyone living with FSH muscular dystrophy, having this information handy can bring much peace of mind in planning the future. Noting that the…
What’s so great about the MOVE study? A lot, if you are research geeks like us or care about getting treatments to patients sooner. MOVE is what’s called an “observational” or “natural history” study of people with facioscapulohumeral muscular dystrophy…
Upcoming Featured Events
Team Captain Rally | Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to...Find out more »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this presentation, Heloise Hoffmann will share her work focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society...Find out more »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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...Find out more »