Our look is new. Our purpose is the same. Learn more about our brand evolution.
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.
2023 Audited Financial Statement
2022 Audited Financial Statement