Causes: Birth Defects & Genetic Diseases Research, Health, Nerve, Muscle & Bone Diseases Research

Mission: Accelerate research on treatments and a cure for FSH muscular dystrophy. We do so by investing in game-changing research initiatives, and by educating, empowering, and activating our stakeholders.

Results: Thousands of FSHD patients and families served. Over $10 million in grants to fund scientific and medical research. Our grants helped to launch the field of FSHD research and have led to the discovery of the genetic cause, development of cellular and animal models, validation of clinical trial endpoints, and other breakthroughs. In 2016, the FSH Society helped to launch the FSHD Clinical Trial Research Network.

Target demographics: patients, families, researchers and clinicians with an interest in FSH muscular dystrophy

Direct beneficiaries per year: 3,000 patients and funded $1.4 million in research grants.

Geographic areas served: all regions of the world

Programs: funding and leading initiatives to accelerate therapy development; engaging and activating patients and families; advocacy with the federal government, industry, and funding organizations.