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.

2021 Financials Summary

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 14 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

Annual Donor Reports

In the Annual Donor Report, we showcase our accomplishments and we detail revenue and spending for the calendar year. The FSHD Society Annual Donor Report is compiled on a cash basis of accounting.  This means that revenue is recorded when the money is received; expenses are recorded on an accrual basis when the funds are spent.

Accrual Accounting recognizes revenue when it is earned/committed (not necessarily received) and expenses when incurred or billed (but not paid).  The tax forms and the audited financial statements use accrual accounting as required by generally accepted accounting principles.

Tax Forms (990 & 501)

Audited Financial Statements