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.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
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
Talking to my FSHD
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?…
Teen with FSHD is in top 40 of Science Talent Search
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…
Upcoming Events
Women on Wellness – Help with activities of daily living
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT At our meeting this month, we'll converse about navigating our challenges with activities of daily living. Share your tips and tricks, and how you find and ask for help when you need it. Women on...
FSHD Radio: Community Profiles with Rick Whitehead
Facebook and YouTubeTuesday, February 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving...
Wellness Hour – Internalized Ableism
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we thought we'd explore the topic of ableism--and in particular ableist concepts that all of us absorb unconsciously because ableism is so deeply embedded in our culture and language that many of us are unaware of them. Internalized...
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.