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Organization Information

Muscular Dystrophy - FSHD Society


We award grants to accelerate cutting edge research into the most prevalent hereditary muscular dystrophy disease, Facioscapulohumeral Muscular Dystrophy, Promoting new drug discoveries & innovative therapies, clinical trials, and scientific collaboration.

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Success Story

The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We are accelerating the development of treatments to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The Society's goal is to have a treatment by the year 2025. We are committed to making sure that no one faces this disease alone.


"This is an investment, not a contribution. I have strong confidence that it will be used to its maximum benefit for all of us affected by FSHD. It is truly a blessing to invest in an organization that does it right."�William Maclean, Pennsylvania

"The FSHD Society has made a light-years difference in the field... attracting and pushing investigators, facilitating wherever possible, and managing the big picture along with the small details."�John Porter, CEO of Parent Project Muscular Dystrophy, former program director at the National Institute of Neurological Disease and Stroke

"The FSHD Society has been such an awesome resource for me. I read and reread much of the information on your website, I have given my doctors much of the information on your website, and the newsletters are very important to me."�Tena Davidson, Member and patient

"The FSHD Society has been instrumental in navigating life after my son's diagnosis."� Kristen, Member and caregiver

Our Promise

As long as we are here, no patient need ever face this disease alone. And with generous donations from people like you, the FSHD Society will reach its goal of a treatment to our families by 2025!