Our Mission

The FSH Society is the world’s largest patient-driven organization for facioscapulohumeral muscular dystrophy, or FSHD, one of the most prevalent forms of muscular dystrophy. We are laser-focused on speeding the development of treatments and a cure for the nearly one million people worldwide who are affected. We do so by investing in research initiatives that will move us further faster; by activating and empowering patients, families and their allies; and by mobilizing resources from industry, government, and other organizations around the most efficient and effective strategy to speed up therapy development.


Accelerating research toward treatments

Activating and empowering our stakeholders 


The FSH Society has funded over $9 million in research initiatives that have propelled us into the era of treatment discovery and development. Our work has contributed to identifying the genetic mechanism of FSHD, development of animal models, validation of clinical trial endpoints, and early-stage drug discovery research. Other signature achievements include co-authorship of the 2001 MD CARE Act that mandated federal attention to all of the muscular dystrophies and led to the NIH-funded Wellstone Cooperative Centers for Muscular Dystrophy Research, the 2015 publication by the National Academy of Neurology of the first evidence-based FSHD care guideline, and the nationwide FSHD Clinical Trial Research Network in 2016. For more details, please see our annual Donor Impact Reports.