The FSHD 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 FSHD Society is deeply committed to working with ingenuity and integrity to accelerate research leading to treatments by 2025. We envision a world free of the suffering caused by FSH Muscular Dystrophy (FSHD) and we will work tirelessly to toward a cure while empowering our families.
As an organization that not only meets, but exceeds the standards set by all groups that monitor the nonprofit sector, we can be proud of how we ensure donor funds are put to the best possible use in achieving our mission.
We have earned your trust. The FSHD Society earned 13 consecutive 4-star awards from Charity Navigator and in 2021 received a Platinum Seal of Transparency on GuideStar, placing us among the highest-performing U.S. charities.
Financials & Donor Reports
Tax Forms (990 & 501)
- 2020 Form 990
- 2019 Form 990
- 2018 Form 990
- 2017 Form 990
- 2016 Form 990
- 2015 Form 990
- 2014 Form 990
- 2013 Form 990
- Also available on the Foundation Center website
- Forms 990 can also be found on Guidestar
- Prior years’ 990s available from the FSHD Society by request.
- 2013 501(c)(3) Tax Form
Audited Financial Statements
Annual Donor Reports
- 2013 Annual Donor Report
- 2012 Annual Donor Report (We inadvertently omitted Judith and Ken Seslowe. The FSHD Society deeply regrets the error.)
- 2011 Annual Donor Report
- 2010 Annual Donor Report
- 2009 Annual Donor Report
- 2008 Annual Donor Report