Who We Are

Founded in 1991 by patients, the FSH Society is the world’s largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists.

What We Do

We are dedicated to helping patients and their families, and finding effective treatments for FSHD through scientific and medical research. We award post-doctoral fellowships to researchers; we provide education and outreach; and we advocate for patients with government and industry to increase funds for research and to encourage drug trials.

What We Have Accomplished

We established an FSHD research program when none existed, by recruiting scientists and persuading the Federal government to allocate funding for FSHD research. Our efforts helped lead to the discovery of the genetic origins of FSHD, the development of FSHD animal models, and insights that are paving the way for treatments.

Breakthroughs Are Happening

Since 2010, a number of breakthroughs have been reported that may well lead to treatments. This cascade of events includes the discovery of a specific genetic “package” called DUX4 associated with FSHD; the successful reversal of FSHD symptoms in mice using gene therapy (RNAi); and identification of genes and proteins that damage muscle cells, as well as the mechanisms that can cause the disease. Most recently, in November 2012, an international team announced the discovery of a second gene, SMCHD1, linked to ~10 percent of cases known as FSHD2.

Our Promise

There is currently no cure or treatment for FSHD, but the recent breakthroughs offer real hope. With generous donations from patients, family, friends, major donors and sponsors, the FSH Society will make sure that these exciting discoveries advance quickly and lead to treatments soon.

You Can Help

Make a gift to the FSH Society today! All donations made by midnight December 31, 2012, will be matched by a group of generous benefactors, up to $255,000. Please help us meet the challenge! Thank you.