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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.
- June Kinoshita
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