Our History
The Society has made significant progress in our first three decades of FSHD community leadership.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
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 are living with FSHD.
The Society has made significant progress in our first three decades of FSHD community leadership.
The Society’s patients, families, researchers, and volunteers are led by experienced leaders and board members.
The FSHD Society has funded over $12 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 guidelines, and the nationwide FSHD Clinical Trial Research Network in 2016. For more details, please see our annual Donor Impact Reports.
Discover Impact
The FSHD Society’s vital work in supporting FSHD patients, families, researchers, and advocates is made possible through the generous contributions of corporate partners who are also dedicated to our mission.
If you would like to learn more about partnering with us, please contact us.
