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
by Haviva Ner-David Part II of excerpts from Dreaming Against the Current. I decided to talk directly to my disease. After thirty-two years, it was about time. “Are you willing to talk to me, FSHD? I know you are there.” “Yes.” “Can you tell me why you showed up in me, out of the blue?…
Our very own Heloise Hoffmann, leader of the Southwest Florida chapter and Walk & Roll, is a science rock star! The Society for Science named her a top 40 finalist in the Regeneron Science Talent Search, the nation’s oldest and…