FSHD SOCIETY
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Mission Statement
Find treatments and a cure for FSHD while empowering our families.
About This Cause
Founded in 1991 by patients, the FSHD Society is the world’s largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. FSHD is a genetic disorder that leads to progressive degeneration of all skeletal muscle. It often affects the muscles of the face (facio), shoulders (scapula) and upper arms (humerus), as well as the legs, leading to profound disability. Nearly 1 million people suffer from FSHD worldwide. Around 30 percent of cases arise spontaneously in families with no prior history, and a recent study indicates that 1 to 2 percent of the population carries the genetic marker. The Society has a 4 Star Charity Navigator Rating.