Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and 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.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
One of the classic symptoms of FSHD is “scapular winging.” The muscles around the shoulder blade (scapula) weaken and allow the bone to jut out like an angel’s wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works for some patients is surgery to attach…
Nestled into a basement in an outpatient building at UCLA Health’s Westwood hospitals is UCLA Neurology, home to ground-breaking FSHD Research. UCLA Health already ranks as the #1 hospital in California, and 4th nationally according to the U.S. News…
Past Featured Events
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to...Find out more »
The National Virtual Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, these events take place all over the nation. Find your local Walk & Roll HERE! No local Chapter-Led Walk & Roll near you? Don't worry! You can still...Find out more »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Kathryn Wagner, MD PhD Kathryn Wagner, MD PhD, has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and...Find out more »