Our Mission

Our Promise

No one should face FSHD alone. The FSHD Society is dedicated to accelerating research toward treatments and a cure while supporting individuals and families every day. This vital work is made possible through the generosity of our community—patients, families, volunteers, and donors who share our vision of a world without FSHD.

Our Mission: Find treatments and a cure for FSHD while empowering families.

Our Core Values: Research | Community | Urgency

What We Do

Accelerating research toward treatments

We bring together patients, scientists, and industry leaders to drive progress faster.

  • Therapeutic Accelerator: Breaking down barriers to successful clinical trials and treatment approvals.
  • Clinical Trial Readiness: Investing in research networks and trial-ready patient communities.
  • Funding Research: Supporting groundbreaking studies that move treatments from the lab to real life.
  • International Collaboration: Convening global experts to share discoveries and set research priorities.

Building & Connecting the Community

We equip individuals and families with knowledge, support, and a powerful voice.

  • Education & Resources: Providing trusted resources through initiatives like BetterLife FSHD, FSHD Navigator, expert webinars, and regional conferences.
  • Support Networks: Connecting people through our Chapter Program, the Gathering Place, and other online communities.
  • Advocacy & Policy: Engaging with policymakers, the NIH, and the FDA to influence legislation and funding.

Our Impact

The FSHD Society has led transformative breakthroughs in FSHD research and advocacy, including:

  • Over $12 million in research funding, driving treatment discovery.
  • Key contributions to identifying the genetic cause of FSHD and developing clinical trial models.
  • Co-authorship of the 2001 MD CARE Act, securing federal attention and funding for muscular dystrophy research
  • The Voice of the Patient Report, now used by the FDA when reviewing potential FSHD treatments.

Our progress is fueled by the strength and dedication of this community.

See Our Impact Reports