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Organization Information

Muscular Dystrophy - FSH Society


We are accelerating research toward treatments and a cure for FSHD, the most prevalent hereditary muscular dystrophy. We activate and empower patients and families so that no one need face this disease alone.

Real Life

The FSH Society established a research program at a time when none existed, by recruiting scientists and advocating for FSHD research. Since then, the Society has funded over $5 million in research grants, which have been leveraged to over $78 million in funding from the National Institutes of Health and other organizations. Today, researchers are closer than ever to a cure. With your help we can get there.


"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 FSH 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 FSH 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 FSH 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 FSH Society will keep working to accelerate research leading to treatments.