EIN 52-1762747

FSHD Society

IRS 501(c) type
501(c)(3)
Num. employees
17
Year formed
1991
Most recent tax filings
2022-12-01
Description
The FSH Society is a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.
Also known as...
Facioscapulohumeral Society
Total revenues
$3,508,920
2022
Total expenses
$4,712,959
2022
Total assets
$6,079,315
2022
Num. employees
17
2022

Program areas at FSHD Society

Research the Society seeks to accelerate research to expedite treatments and a cure for FSHD muscular dystrophy. Organizing and funding research into the causes of FSHD, and, ultimately developing treatments and a cure, is the Society's core mission.
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.

Grants made by FSHD Society

GranteeGrant descriptionAmount
Johns Hopkins University (JHU)The Fibro-Adipogenic Progenitors, the Exosomes, and the FSHD Myopathy$143,000
University of Kansas Medical Center Research InstituteClinical Trials Research Network (CTRN) for Facioscapulohumeral Muscular Dystrophy (FSHD)$120,000
Saint Louis University (SLU)Molecular Mechanisms of P38-Dependent and -independent Dux4 Activation During Myogenesis$67,100

Who funds FSHD Society

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Robert C and Ruth Womack FoundationMedical Research$90,000
Collier Community FoundationHealth$74,165
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$53,750
...and 23 more grants received totalling $381,656

Personnel at FSHD Society

NameTitleCompensation
Mark A. StoneBoard Member$223,921
Lisa C. SchimmelChief Financial Officer$116,490
Kenneth Alexander KahtavaChief Business Officer$108,907
Beth JohnstonBoard Member$122,500
Jamshid Arjomand, PhDChief Science Officer$197,520
...and 8 more key personnel

Financials for FSHD Society

RevenuesFYE 12/2022
Total grants, contributions, etc.$2,930,776
Program services$304,466
Investment income and dividends$98,205
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$35,699
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$139,774
Total revenues$3,508,920

Form 990s for FSHD Society

Fiscal year endingDate received by IRSFormPDF link
2022-122023-03-30990View PDF
2021-122022-04-05990View PDF
2020-122021-05-21990View PDF
2019-122020-08-27990View PDF
2018-122019-06-19990View PDF
...and 9 more Form 990s
Data update history
February 3, 2024
Received grants
Identified 8 new grant, including a grant for $90,000 from Robert C and Ruth Womack Foundation
October 23, 2023
Received grants
Identified 1 new grant, including a grant for $10,073 from The Blackbaud Giving Fund
August 19, 2023
Received grants
Identified 12 new grant, including a grant for $74,165 from Collier Community Foundation
June 22, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 16, 2023
Posted financials
Added Form 990 for fiscal year 2022
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
Science and technologyHealthDiseases and disorders
Characteristics
Political advocacyOperates donor advised fundsConducts researchFundraising eventsGrassroots organizingOperates internationallyNational levelCommunity engagement / volunteeringTax deductible donations
General information
Address
75 North Main St 1073
Randolph, MA 02368
Metro area
Boston-Cambridge-Newton, MA-NH
Website URL
fshdsociety.org/ 
Phone
(781) 301-6060
IRS details
EIN
52-1762747
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1991
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G50: Nerve, Muscle, and Bone Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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