Fshd Society

Organization Overview

Fshd Society, operating under the name Fsh Society, is located in Randolph, MA. The organization was established in 1992. According to its NTEE Classification (H20) the organization is classified as: Birth Defects & Genetic Diseases Research, under the broad grouping of Medical Research and related organizations. As of 12/2023, Fsh Society employed 18 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Fsh Society is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2023, Fsh Society generated $4.5m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 9.1% each year. All expenses for the organization totaled $4.3m during the year ending 12/2023. While expenses have increased by 10.2% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Fsh Society has awarded 79 individual grants totaling $7,425,859. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2023

Describe the Organization's Mission:

Part 3 - Line 1

FIND TREATMENTS AND A CURE FOR FSHD WHILE EMPOWERING OUR FAMILIES

Describe the Organization's Program Activity:

Part 3 - Line 4a

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.


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Board, Officers & Key Employees

Name (title)Compensation
James A Chin Sr
Chairman
$0
Howard L Chabner JD
Vice Chairman
$0
Christine Ford
Secretary
$0
Ellen K Hannan
Treasurer
$0
Amy Z Bekier
Board Member
$0
Stuart Lai
Board Member
$0

Outside Vendors & Contractors

Vendor Name (Service)Compensation
Iqvia Inc
Data Management And Registry
$300,000
Maryna Kolochavina
Health Economic Consultant
$180,820
View All Vendors

Financial Statements

Statement of Revenue
Federated campaigns$4,915
Membership dues$0
Fundraising events$977,405
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$3,123,855
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$4,106,175
Total Program Service Revenue$157,597
Investment income $154,284
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales -$5,266
Net Income from Fundraising Events $39,986
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $4,455,414

Grants Awarded

Over the last fiscal year, Fshd Society has awarded $413,600 in support to 4 organizations.

Grant RecipientAmount

JOHNS HOPKINS UNIVERSITY

PURPOSE: THE FIBRO-ADIPOGENIC PROGENITORS, THE EXOSOMES, AND THE FSHD MYOPATHY

$143,000

UNIVERSITY OF MINNESOTA

PURPOSE: INTERROGATION OF MDUX EXPRESSION IN MUSCLE IN MICE

$83,500

ST LOUIS UNIVERSITY

PURPOSE: MOLECULAR MECHANISMS OF P38-DEPENDENT AND -INDEPENDENT DUX4 ACTIVATION DURING MYOGENESIS

$67,100

UNIVERSITY OF KANSAS MEDICAL CENTER

PURPOSE: CLINICAL TRIALS RESEARCH NETWORK (CTRN) FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD)

$120,000
View Grant Profile

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