• The FSH Society The FSH Society


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Mission Statement

We are the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected. We are a cause without borders.


The FSH Society is a small, efficient, national nonprofit organization dedicated to fostering research on the most common form of muscular dystrophy. With our small, lean staff, we have raised $3.6 million in funding for FSH muscular dystrophy research and successfully lobbied Congress and the National Institutes of Health for research grants for scientists. We also provide support and educational resources to patients and families around the world. Our excellent fiscal management enables us to direct 87 percent of what we raise directly to programs. For this outstanding performance, the FSH Society has earned Charity Navigator's 4-star rating.



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Average Review 3 reviews

Would you recommend The FSH Society?

by Robert S. (2012-10-26 06:44:19.0)
I first learned of this organization in 1994 and it has been crucial in my understanding and acceptance of FSH muscular dystrophy. It is amazing what information is disseminated and research that is funded. It is an organization started by patients, for patients and doctors and researchers and has been in the forefront of advancements relating to this disease. Superb job? keep up the good work.
by Rich H. (2012-10-25 18:50:36.0)
As a FSHD patient, I find the society to be at the forefront of research into this form of muscular dystrophy, and I like that its small staff means that most of the donations it receives go to research. As a volunteer, I see the organization -- actually a network of researchers and volunteers -- as something I can readily work for. It's operation is honest, straightforward and transparent. The staff is very supportive of volunteer efforts. It is rewarding to collaborate with them.
by Amy B. (Administrator for this Organization) (2012-10-25 10:47:20.0)
It is my pleasure to be a dedicated volunteer for this effective, tightly run and ethical national organization. I know my efforts are being put to the best possible use. I believe, no, I know that this organization will have a direct hand in helping find a treatment or cure for this progressive, debilitating neuromuscular disease.