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FSHD SOCIETY

RANDOLPH, MAEIN: 52-1762747Website

Data sourced from IRS 990 public filings

FSHD SOCIETY FIND TREATMENTS AND A CURE FOR FSHD WHILE EMPOWERING OUR FAMILIES

National
Adults (Ages 26-64)
Children (Ages 0-12)
Policy Advocacy & Legislative Reform
Direct Service Delivery
Medical Research
Education & Awareness
Disease-Specific Services

Annual Revenue

$4,942,571

Known Funders

7

Grants Received

8

Financial History

YearRevenueExpensesAssets
2024$4,942,571$5,475,276$5,592,191
2023$4,455,414$4,311,066$6,421,254
2022$3,508,920$4,712,959$6,079,315
2021$5,488,220$4,615,323$7,638,819
2020$2,627,205$2,864,804$5,835,495
2019$5,268,516$3,240,360$6,492,466
2018$2,701,749$2,672,270$3,957,807
2017$3,253,712$2,423,238$4,482,129

Top Funders

$74,165 (2021)
$29,500 (2021)
$24,500 (2022)
$20,000 (2023)
$17,760 (2021)
$13,800 (2021)
$8,417 (2022)
$1,000 (2024)

Key Personnel

From 2024 IRS 990 filing

A

AMANDA HILL

SENIOR DIRECTOR OF RESEARCH AND CARE

Highest Compensated
B

BETH JOHNSTON

CHIEF COMMUNITY ENGAGEMENT OFFICER

Highest Compensated
C

CAROLYN LLOYD

CHIEF DEVELOPMENT OFFICER

Highest Compensated
J

JUNE KINOSHITA

DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT

Highest Compensated
K

KENNETH ALEXANDER KAHTAVA

CHIEF OPERATING OFFICER

Key Employee
M

MARK STONE

CEO & PRESIDENT

Officer
A

AGNES M MESTRICH

CHIEF FINANCIAL OFFICER

Officer
J

JASON SHI

BOARD MEMBER

J

JACK GERBLICK

BOARD MEMBER

A

AMY Z BEKIER

BOARD MEMBER

Showing 10 of 26 key personnel.

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