Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Understanding your FSHD
To be able to take charge, you need to listen to your body by Lonwabo Nene, South Africa “I don’t know, but my right arm feels loose. In fact, my entire right side feels kind of loose. But at the same time – tight.” That was the first time I actually tried to describe the…
Vita Therapeutics’ cell-based therapy update
The company switches up its strategy and plans to develop muscle stem cells that evade the immune system by June Kinoshita, FSHD Society Hot off the press is this news that Vita Therapeutics shared at the Greater Philadelphia chapter meeting…
Upcoming Events
Featured
Feeling Fit with FSHD – Qi Gong with Frank Hanley
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT As Rita Lynn has had to cancel her yoga session with us, we are happy to welcome Frank Hanley, who will lead us through some Qi Gong exercises. He always comes up...
Women On Wellness – When your care plan doesn’t work anymore
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will continue our discussion on what to do when your current care plan isn't working anymore. As always, expect a wealth of practical tips, sympathy, and the supportive company of awesome women....
Wellness Hour – Rick’s tummy tuck
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles (the cause of the "pregnant belly" silhouette). We're being tongue in cheek about this being a "tummy tuck," as it's not a cosmetic procedure but...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.