The FSHD Society is a top-rated nonprofit, recognized with Charity Navigator’s highest rating and a Platinum Seal of Transparency from GuideStar. We are leading the charge to find treatments and a cure for FSHD, while making sure individuals and families get the support, advocacy, and resources they need.
Through programs like the FSHD Navigator, patient-led advocacy, and strong partnerships, we are removing barriers to care and speeding up progress. Every dollar you give drives real change—funding research, connecting families, and empowering those living with FSHD today. With your support, we are bringing hope and transforming lives.
We are committed to accountability, transparency, and earning your trust.
Despite a tumultuous year, 2025 brought extraordinary momentum for the FSHD Society and proved what’s possible when generosity meets purpose. Industry partners, individual donors, and hundreds of volunteer fundraisers contributed millions of dollars to advance our mission. The community gathered and gave, and we gained critical ground as a result.
Thank you for believing in this moment and in this community. We invite you to celebrate the achievements of 2025 with our annual Impact Report.
English English 
العربية
Español de México
Français du Canada
简体中文
