FSHD Society

A nonprofit organization

1,327 donors

Who We Are

Founded in 1991 by patients, the FSH Society is the world’s largest grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families, and research activists. FSHD is the most common genetic myopathy affecting men, women, and children. Marked by progressive degeneration of skeletal muscle, it typically manifests in the face (facio), shoulders (scapula), and upper arms (humerus), as well as the legs, and can spread to any muscle, leading to profound disability. An estimated 870,000 people suffer from FSHD worldwide. About 30 percent of cases arise spontaneously in families with no prior history.

Founded in 1991 by two individuals with FSHD, the FSH Society has forever altered the world for the 870,000 people living with this condition.

Where before, there was a black hole of mystery about this genetic disorder, we now have identified two genes and are unraveling one of the most complex disease-causing genetic mechanisms know to science. Where before, people diagnosed with FSHD had nowhere to turn, they are now a phone call or mouse click away from a worldwide network of experts and fellow patients.

Over our 25-year history, we have funded a cumulative $6.83 million in research grants—on the order of the yearly budget of a single major cancer lab. Yet this modest sum, much of it awarded as seed grants to support young scientists and young ideas, has led to breakthrough discoveries and launched the field into the era of drug discovery. Since 2014, a new biotech firm has been founded and a second has embarked on a clinical trial for FSHD. 

You Can Help 

Make a gift to the FSH Society today! Support our hard-working volunteers by attending or donating to their fundraising events, and volunteer your own time and talents!

Organization Data


Organization name

FSHD Society

Tax id (EIN)



Science, Tech & Business


74 North Main Street, Ste. 1073
Randolph, MA 02368