"By Age Twenty, 95% of  individuals with FSHD

will have symptoms related to muscle weakening."

Long Island FSHD Foundation is a 501(c)(3)non-profit organization dedicated to the effort of eradicating the life-altering effects of Facioscapulohumeral muscular dystrophy (FSHD). We are an independent, volunteer foundation providing funding to research scientists in the hope that stimulating scientific research in the field of FSHD will lead to an effective treatment and eventually a cure.

Although FSHD is now the most common form of muscular dystrophy, FSHD research has been dramatically under funded by major muscular dystrophy organizations and the National Institutes of Health for decades. Long Island FSHD Foundation is the only organization in the New York area, and only one of three in the nation, specifically focused on FSHD.

FSHD usually strikes during the teenage years. By age twenty, 95% of individuals with FSHD will have symptoms related to muscle weakening. At the present time, FSHD patients are faced with the harsh reality that they are living with a progressive disease for which there is no treatment and no cure. Thousands of patients are devastated by the unrelenting effects of muscle deterioration and disability. Thousands of lives are forever changed. Thousands of dreams are forever shattered.

Please help us keep those dreams alive.

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Long Island FSHD Foundation

We'd love to hear from you! If you, or a friend or family member have FSHD or if you'd like to learn more about LIFSHD please contact Jennifer at FSHDfoundation@gmail.com