NonprofitsFshd Society

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.

Expenses: $2.3MGrants: $132K

Financials

FY 2024

Revenue

Contributions & grants$4.4M
Program service revenue$303K
Investment income$122K
Other revenue$78K
Total revenue$4.9M

Expenses

Grants paid$278K
Salaries & benefits$2.7M
Fundraising$630K
Other expenses$2.5M
Total expenses$5.5M
Total assets$5.6M
Net assets$4.7M

People

26 listed

NameRoleCompensation

MARK STONE

CEO & PRESIDENT

Board

$227K

40 hrs/wk

AGNES M MESTRICH

CHIEF FINANCIAL OFFICER

Board

$169K

40 hrs/wk

LINDA LAURELLO

BOARD MEMBER

Board

1 hrs/wk

ROBERT HUMPHREYS JR

BOARD MEMBER

Board

1 hrs/wk

MICHELLE HELEN MACKAY

BOARD MEMBER

Board

1 hrs/wk

NEIL ANDREW SOLOMON MD FACP

BOARD MEMBER

Board

1 hrs/wk

STUART LAI

BOARD MEMBER

Board

1 hrs/wk

CHRIS MANCILL

BOARD MEMBER

Board

1 hrs/wk

CHRISTINE FORD

FORMER SECRETARY

Board

10 hrs/wk

WILLIAM SARRAILLE

BOARD MEMBER

Board

1 hrs/wk

BRUCE RYSKAMP

BOARD MEMBER

Board

1 hrs/wk

AMY Z BEKIER

BOARD MEMBER

Board

10 hrs/wk

JACK GERBLICK

BOARD MEMBER

Board

1 hrs/wk

JASON SHI

BOARD MEMBER

Board

1 hrs/wk

WILLIAM R LEWIS III MD

BOARD MEMBER

Board

1 hrs/wk

ELLEN K HANNAN

FORMER TREASURER

Board

10 hrs/wk

GEORGE POLLOCK JR

TREASURER

Board

10 hrs/wk

HOWARD L CHABNER JD

VICE CHAIRMAN

Board

10 hrs/wk

JAMES A CHIN SR

CHAIRMAN

Board

10 hrs/wk

MEL HAYES

BOARD MEMBER

Board

1 hrs/wk

LEE FRANK KOLAKOWSKI PHD

BOARD MEMBER

Board

10 hrs/wk

KENNETH ALEXANDER KAHTAVA

CHIEF OPERATING OFFICER

Staff

$191K

40 hrs/wk

BETH JOHNSTON

CHIEF COMMUNITY ENGAGEMENT OFFICER

Staff

$151K

40 hrs/wk

CAROLYN LLOYD

CHIEF DEVELOPMENT OFFICER

Staff

$145K

40 hrs/wk

AMANDA HILL

SENIOR DIRECTOR OF RESEARCH AND CARE

Staff

$120K

40 hrs/wk

JUNE KINOSHITA

DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT

Staff

$110K

40 hrs/wk

Independent contractors

LUMIIO

DATA MANAGEMENT AND REGISTRY

$672K

JIGSAW

MARKETING MATERIALS AND WEBSITE BUILDING

$162K

AGENTUR ZIELGENAU GMBH

PROJECT MERCURY

$146K

RADBOUD UNIVERSITY MEDICAL CENTER

PROJECT MERCURY

$104K

Grants received

Showing 130 of 130

FromAmountPurposeYear
$100K
Medical Research
2024
$36K
CHARITABLE DONATION
2024
$25K
UNRESTRICTED
2024
$20K
FOR RECIPIENT'S EXEMPT PURPOSE
2024
$15K
GENERAL SUPPORT
2024
$10K
IN HONOR OF CYNDI SEGROVES. TO BE USED EXCLUSIVELY FOR RESEARCH. FROM DAVID AND MICHELLE MACKAY
2024
$7K
FOR GENERAL SUPPORT.
2024
$5K
General Purpose
2024
$5K
FSHD Research Program
2024
$5K
UNRESTRICTED GENERAL SUPPORT
2024
$3K
General Operating Support
2024
$3K
TO SUPPORT THE ORGANIZATION'S MISSION AND PROVIDE GENERAL OPERATING SUPPORT
2024
$1K
MATCHING CONTRIBUTION (GENERAL OPERATING SUPPORT)
2024
$1K
FURTHER ORGANIZATIONS GOALS
2024
$500
FOR THE USE OF THE DONEE ORGANIZATION
2024
$500
MEDICAL RESEARCH
2024
$149K
For grant recipient's exempt purposes
2023
$100K
Medical Research
2023
$34K
CHARITABLE DONATION
2023
$22K
FOR RECIPIENT'S EXEMPT PURPOSE
2023
$20K
GENERAL CHARITABLE PURPOSES
2023
$20K
FOR RECIPIENT'S EXEMPT PURPOSE
2023
$13K
Charitable purpose
2023
$10K
UNRESTRICTED
2023
$10K
General Purpose
2023
$5K
clinical research fund
2023
$2K
PROGRAM/OPERATING SUPPORT
2023
$2K
Unrestricted
2023
$2K
GENERAL CORPORATE PURPOSE
2023
$1K
GENERAL OPERATING SUPPORT
2023
$1K
HUMANITARIAN
2023
$993
PROGRAM/OPERATING SUPPORT
2023
$500
MEDICAL RESEARCH
2023
$500
FOR THE USE OF THE DONEE ORGANIZATION
2023
$300
UNRESTRICTED
2023
$300
PROGRAM/OPERATING SUPPORT
2023
$250
MATCH PAYROLL DEDUCTION (501(C)3)
2023
$250
MATCHING GIFT TO CIVIC AGENCY
2023
$250
MEDICAL RESEARCH
2023
$231
IN SUPPORT OF RF DONATIONS TO CHARITABLE ORGANIZATIONS
2023
$103
GENERAL OPERATING PURPOSE
2023
$100
PROGRAM/OPERATING SUPPORT
2023
$100
GENERAL OPERATING SUPPORT
2023
$100
DONATIONS TO COLLEGES, UNIVERSITIES AND OTHER ORGANIZATIONS UNDER "MATCHING GIFTS PROGRAM."
2023
$50
GIFT MATCH GRANTS
2023
$90K
Medical Research
2022
$63K
For grant recipient's exempt purposes
2022
$25K
FOR RECIPIENT'S EXEMPT PURPOSE
2022
$15K
UNRESTRICTED
2022
$10K
GENERAL SUPPORT
2022
$10K
GENERAL USE BY QUALIFIED DONEE ORGANIZATION
2022
$8K
CHARITABLE DONATION
2022
$5K
General Research Support
2022
$1K
GENERAL CORPORATE PURPOSE
2022
$500
MEDICAL RESEARCH
2022
$500
MATCHING GIFTS
2022
$500
FOR THE USE OF THE DONEE ORGANIZATION
2022
$350
PROGRAM/OPERATING SUPPORT
2022
$250
PROGRAM/OPERATING SUPPORT
2022
$50
GIFT MATCH GRANTS
2022
$54K
For grant recipient's exempt purposes
2021
$54K
For grant recipient's exempt purposes
2021
$30K
For recipient's exempt purpose
2021
$14K
ADVOCACY AND RESEARCH
2021
$1K
GENERAL CORPORATE PURPOSE
2021
$1K
GENERAL OPERATING SUPPORT
2021
$500
GRANT TO FURTHER DONEE'S EXEMPT PURPOSE
2021
$250
FOR UNRESTRICTED CHARITABLE PURPOSES
2021
$118
GENERAL PURPOSE
2021
$53K
For grant recipient's exempt purposes
2020
$22K
FOR RECIPIENT'S EXEMPT PURPOSE
2020
$15K
UNRESTRICTED
2020
$14K
ADVOCACY AND RESEARCH
2020
$10K
unrestricted
2020
$10K
GENERAL SUPPORT
2020
$8K
General support
2020
$5K
HEALTH
2020
$1K
GENERAL CORPORATE PURPOSE
2020
$500
GRANT TO FURTHER DONEE'S EXEMPT PURPOSE
2020
$500
FOR THE USE OF THE DONEE ORGANIZATION
2020
$500
UNRESTRICTED
2020
$100
GIFT MATCHING GRANT
2020
$249K
Charitable Donation
2019
$58K
For grant recipient's exempt purposes
2019
$10K
General support
2019
$270
UNRESTRICTED
2019
$37K
For grant recipient's exempt purposes
2018
$15K
General Support
2018
$5K
GENERAL PURPOSE
2018
$14K
HUMAN SERVICES
2017
$9K
General Support
2017
$6K
HEALTH & HUMAN SERVICES
2017

Funded by

$2.2M from 59 funders · 130 grants · 2017–2024

Fidelity Investments Charitable Gift Fund

$468K · 7 grants · 2018–2023

Robert C and Ruth Womack Foundation

$290K · 3 grants · 2022–2024

American Online Giving Foundation Inc

$274K · 6 grants · 2019–2024

Charities Aid Foundation America

$258K · 2 grants · 2019–2022

Donor Advised Charitable Giving Inc

$237K · 7 grants · 2017–2023

Vanguard Charitable Endowment Program

$97K · 4 grants · 2020–2023

Collier Community Foundation Inc

$74K · 1 grant · 2021

Tribune-Review Charities

$70K · 2 grants · 2023–2024

Details

EIN521762747
NTEE codeH20Z
Subsection03
Ruling date1992-02
Formed1991
Employees23
Volunteers150
FSHD SOCIETY — Mission, Financials & Grants Received | Grantivo