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…
Join us on June 24 at 4:00 pm US ET for this special webinar on the findings from Fulcrum Therapeutics’ ReDUX4 clinical trial. The Fulcrum team will be sharing the data from its Phase 2b clinical trial of Losmapimod, a…
Past Featured Events
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your...Find out more »
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). This month we will talk about transitions, which are an inevitable fact of life for anyone living with a progressive condition like...Find out more »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes...Find out more »