Mission
FIND TREATMENTS AND A CURE FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) WHILE EMPOWERING OUR FAMILIES.
Public Charity
FSHD SOCIETY
FSHD SOCIETY, of RANDOLPH, MA, is a Public Charity tracked in Imperigo's IRS 990 database. The 2024 filing shows $4.9M in revenue, $5.5M in expenses, $5.6M in total assets. 71 publicly reported grants to this organization, totaling roughly $2.9M, appear in IRS filings.
EIN: 521762747
RANDOLPH, MA
Birth Defects & Genetic Diseases Research
NTEE: H20
Latest filing: 2024
Total Revenue$4.9M
Total Expenses$5.5M
Total Assets$5.6M
Grant Records71
Funding Total$2.9M
Filing Years2020–2024
Where $100 goes at Fshd Society
How Fshd Society divides every $100 it spends, from its own Form 990 filings, averaged across 8 years.
$78
Programs
the work itself
$10
Management
running the organization
$12
Fundraising
raising the next dollar
Inside the $78 for programs
$43
Patient advocacy and educationthe society seeks to enlarge, engage, & empower an active global community
$35
Research the society seeks to accelerate research to expedite treatments and a cure for fshd muscular dystrophy
Source: Form 990 filings with the IRS, latest fiscal year 2024. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
GENERAL SUPPORT
$8,973
For grant recipient's exempt purposes
$583,585
GENERAL SUPPORT
$49,377
GENERAL SUPPORT
$49,377
FOR RECIPIENT'S EXEMPT PURPOSE
$33,700
Showing up to 5 of 71 total records — full history available with membership.
Officers & Directors
CHIEF FINANCIAL OFFICER
Agnes M Mestrich
SENIOR DIRECTOR OF RESEARCH AND CARE
Amanda Hill
BOARD MEMBER
Amy Z Bekier
CHIEF COMMUNITY ENGAGEMENT OFFICER
Beth Johnston
BOARD MEMBER
Bruce Ryskamp
CHIEF DEVELOPMENT OFFICER
Carolyn Lloyd
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2024 | $4.9M | $5.5M | $5.6M |
| 2023 | $4.5M | $4.3M | $6.4M |
| 2022 | $3.5M | $4.7M | $6.1M |
| 2021 | $5.5M | $4.6M | $7.6M |
| 2020 | $2.6M | $2.9M | $5.8M |
Between 2020 and 2024, reported annual revenue grew from $2.6M to $4.9M (+88%), with total assets most recently reported at $5.6M.
Interactive year-over-year charts and full filing details available with membership.