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.
OUR FOCUS AREAS
Accelerating research toward treatments
- 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.
- Clinical Trial Readiness Initiatives. We invest where we can have the greatest impact on speeding up treatments. Our priorities include the Clinical Trial Research Network, biomarkers, animal models, and developing biomaterial resources.
Activating and empowering our stakeholders
- Strengthening communities. We bring patients and families together to support one another and share knowledge. We train and empower volunteer leaders to become effective advocates and fundraisers in their communities.
- Knowledge is power. We publish authoritative news and brochures, and organize meetings to educate patients and families about diagnosis, managing symptoms, and clinical research. These include over 25 local support groups, 7 biennial FSHD Family Day conferences, and a webinar series.
- No one need face this disease alone. We are available 24/7 for patients and families via phone, email, and social media. We connect people to peer counselors and facilitate a thriving community of volunteer-run Facebook groups with thousands of members.
- Advocating for action. Our co-founder and CSO Daniel Perez serves on the presidential Muscular Dystrophy Coordinating Committee which meets annually to assess progress on all of the muscular dystrophies. We work closely with NIH and FDA officials, and other advocacy organizations worldwide to push forward policies and legislation to help our community.
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.