Our Mission

Our Vision
A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)
Our Mission
Find treatments and a cure for FSHD while empowering our families
Our Strategies
Accelerate the development of treatments and a cure for FSHD
Increase, engage, and empower our stakeholders
Aggressively leverage and expand resources to support our Mission
Our Core Values

Research | Community | Urgency

The FSH 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 FSH Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.


Accelerating research toward treatments

  • Therapeutic Accelerator. We bring all of the stakeholders together to focus on removing obstacles to the success of clinical trials and regulatory approval of FSHD therapies.
  • Clinical Trial Readiness Initiatives. We invest in infrastructure to position the field for clinical trials. Priorities include the Clinical Trial Research Network and programs to develop “trial ready” patient communities.
  • Research Funding. We award grants to the best basic research to drive understanding of the disease, identify therapeutic targets, and develop the tools needed to translate discoveries into treatments.
  • International Research Consortium (IRC) workshop. We gather the world leaders in FSHD research every year to promote rapid communication of research advances, encourage collaborations, and set research priorities for the future.

Activating and empowering our stakeholders 


The FSH Society has 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. 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.