“The Future is not a place we are going, but a place we are creating. First in mind...next in will…then in activity!”
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
We have funded over $10 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.
Dedicated staff and committed volunteers lead this effort with a great sense of urgency. It is the collaborative community and coordinated effort we build with volunteers, patients, family members, healthcare professionals and research industry leaders that will lead us to treatments by 2025 and then on to a cure.