Medical Research
Fshd Society
RANDOLPH, MA
Total revenue
$4.9M
Total expenses
$5.5M
Net assets
$4.7M
Grants received
$2.2M
130 grants
EIN
521762747
Tax year
2024
Mission
Find treatments and a cure for fshd while empowering our families
Programs
1 program
Patient advocacy and educationthe society seeks to enlarge, engage, & empower an active global community. The fshd society's patient advocacy and education programs directly benefit patients and their families by connecting fshd muscular dystrophy patients and families to healthcare providers, research institutions, and support groups, providing high-quality educational materials, organizing educational meetings and conferences, and creating opportunities and support for advocacy and raising public awareness.
Financials
FY 2024
Revenue
Expenses
People
26 listed
MARK STONE
CEO & PRESIDENT
$227K
40 hrs/wk
AGNES M MESTRICH
CHIEF FINANCIAL OFFICER
$169K
40 hrs/wk
LINDA LAURELLO
BOARD MEMBER
—
1 hrs/wk
ROBERT HUMPHREYS JR
BOARD MEMBER
—
1 hrs/wk
MICHELLE HELEN MACKAY
BOARD MEMBER
—
1 hrs/wk
NEIL ANDREW SOLOMON MD FACP
BOARD MEMBER
—
1 hrs/wk
STUART LAI
BOARD MEMBER
—
1 hrs/wk
CHRIS MANCILL
BOARD MEMBER
—
1 hrs/wk
CHRISTINE FORD
FORMER SECRETARY
—
10 hrs/wk
WILLIAM SARRAILLE
BOARD MEMBER
—
1 hrs/wk
BRUCE RYSKAMP
BOARD MEMBER
—
1 hrs/wk
AMY Z BEKIER
BOARD MEMBER
—
10 hrs/wk
JACK GERBLICK
BOARD MEMBER
—
1 hrs/wk
JASON SHI
BOARD MEMBER
—
1 hrs/wk
WILLIAM R LEWIS III MD
BOARD MEMBER
—
1 hrs/wk
ELLEN K HANNAN
FORMER TREASURER
—
10 hrs/wk
GEORGE POLLOCK JR
TREASURER
—
10 hrs/wk
HOWARD L CHABNER JD
VICE CHAIRMAN
—
10 hrs/wk
JAMES A CHIN SR
CHAIRMAN
—
10 hrs/wk
MEL HAYES
BOARD MEMBER
—
1 hrs/wk
LEE FRANK KOLAKOWSKI PHD
BOARD MEMBER
—
10 hrs/wk
KENNETH ALEXANDER KAHTAVA
CHIEF OPERATING OFFICER
$191K
40 hrs/wk
BETH JOHNSTON
CHIEF COMMUNITY ENGAGEMENT OFFICER
$151K
40 hrs/wk
CAROLYN LLOYD
CHIEF DEVELOPMENT OFFICER
$145K
40 hrs/wk
AMANDA HILL
SENIOR DIRECTOR OF RESEARCH AND CARE
$120K
40 hrs/wk
JUNE KINOSHITA
DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT
$110K
40 hrs/wk
Independent contractors
LUMIIO
DATA MANAGEMENT AND REGISTRY
JIGSAW
MARKETING MATERIALS AND WEBSITE BUILDING
AGENTUR ZIELGENAU GMBH
PROJECT MERCURY
RADBOUD UNIVERSITY MEDICAL CENTER
PROJECT MERCURY
Grants received
Showing 130 of 130
Funded by
$2.2M from 59 funders · 130 grants · 2017–2024
$468K · 7 grants · 2018–2023
$290K · 3 grants · 2022–2024
$274K · 6 grants · 2019–2024
$258K · 2 grants · 2019–2022
$237K · 7 grants · 2017–2023
$97K · 4 grants · 2020–2023
$74K · 1 grant · 2021
$70K · 2 grants · 2023–2024