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For the seventh year in a row, we have earned Charity Navigator's 4-star rating

Research leading to treatments is producing results. We need everyone's best work now--researchers and donors--to help reach our goal!

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.

What We Do

We help patients and families through education and outreach; fund scientific research leading to treatments, guided by our world-class scientific advisory board; and advocate for increased government and industry funding 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 have resulted in:

- passage of the MD-CARE Act mandating federal action on all muscular dystrophies;

- the discovery of the genetic causes of FSHD;

- understanding of how the genetic defects lead to expression of a toxic gene;

- high-throughput drug screening to identify potential treatments;

- the development of FSHD animal models;

- induced pluripotent stem cell lines for drug screening and gene therapy;

- applications of genomic engineering aimed at blocking the genetic defect in FSHD;

- the development of biomarkers, imaging markers, and clinical trial endpoints.

Our Promise

As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, family, friends, major donors, and sponsors, the FSH Society will keep working to accelerate research leading to treatments.

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!

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Organization Information

450 Bedford Street
Lexington, MA 02420




Research leading to treatments is producing results. We need everyone's best work now--researchers and donors--to help reach our goal!

EIN: 521762747

Reports: Guidestar

External Web Addresses:

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