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
The FSHD Society is offering its first-ever CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD). This course, which will be held virtually on August 12, is of interest to any physician and allied health professional who sees adult and pediatric neuromuscular patients. They will be able to earn up to 4.25 continuing medical education (CME) credits—a…
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
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,...Find out more »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access...Find out more »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference...Find out more »