FSHD Society
Find treatments and a cure for facioscapulohumeral muscular dystrophy (FSHD) while empowering our families.
FSHD Society at a glance
In short: FSHD Society reported $146K in grants paid in 2024 (a total; its filing lists no individual grants). Source: 2024 IRS Form 990.
- Grants paid (2024)
- $146,046 — reported as a total on the IRS filing, without an itemized list
- -64.0% vs 2023
- Total assets
- $5,592,191
- -12.9% vs 2023
- Revenue (2024)
- $4,942,571
- +10.9% vs 2023
- Net investment income (2024)
- $122,391
- -17.9% vs 2023
- Expenses (2024)
- $5,475,276
- +27.0% vs 2023
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
Who FSHD Society funds
How this funder distributes its grants
Grant Size Distribution
19 grants across all recorded years
The most common grant size was in the $100–250K range: 6 grants of 19 (32%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
How FSHD Society gives
- Giving fell 55% from 2019 to 2022. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2024, annual grant giving ranged from $146K (2024) to $1.4M (2021). In 2024 it reported $146K in grants paid, as a total without an itemized list.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Johns Hopkins University Baltimore, MD | The fibro-adipogenic progenitors, the exosomes, and the fshd myopathy | $143,000 |
| University of Kansas Medical Center Fairway, KS | Clinical trials research network (CTRN) for facioscapulohumeral muscular dystrophy (FSHD) | $120,000 |
| University of Minnesota Minneapolis, MN | Interrogation of Mdux Expression in Muscle in Mice | $83,500 |
| St Louis University St. Louis, MO | Molecular mechanisms of p38-dependent and -independent dux4 activation during myogenesis | $67,100 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $5,592,191 | $4,942,571 | $5,475,276 | $146,046 | Total only | $122,391 |
| 2023 | $6,421,254 | $4,455,414 | $4,311,066 | $405,429 | Total only | $149,018 |
| 2022 | $6,079,315 | $3,508,920 | $4,712,959 | $413,600 | 4 | $133,904 |
| 2021 | $7,638,819 | $5,488,220 | $4,615,323 | $1,418,356 | 9 | $421,183 |
| 2020 | $5,835,495 | $2,627,205 | $2,864,804 | $535,174 | 6 | $196,112 |
| 2019 | $6,492,466 | $5,268,516 | $3,240,360 | $914,862 | 9 | $116,332 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About FSHD Society
Based on IRS filings
FSHD Society is a public charity focused on Medical Research, based in Randolph, MA. IRS filing data is available from 2019 through 2024. As of 2024, the organization holds $5.6M in total assets. In 2024, it reported $146K in grants paid as a total on its IRS filing, without an itemized list. Net investment income was $122K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
FSHD Society is led by Mark Stone, CEO & President on every filing since 2019; 7 of 26 officers listed in 2024 are compensated.
Officers on the 2024 filing
Mark Stone
CEO & President
On filings since 2019
40 hrs/week
$187K (2019) → $227K (2024)
James A. Chin Sr.
Chairman
On filings since 2019
10 hrs/week
No compensation reported
June Kinoshita
Director of Research & Patient Engagement
Senior Director of Research & Education → Senior Director of Researc, 2023
Senior Director of Researc → Director of Research & Patient Engagement, 2024
On filings since 2019
40 hrs/week
$130K (2019) → $110K (2024)
Amanda Hill
Senior Director of Research & Care
Director of Clinical Research → Senior Director of Research & Care, 2024
On filings since 2023
40 hrs/week
$108K (2023) → $120K (2024)
Beth Johnston
Chief Community Engagement Officer
Chief Community Engagement Officer → Chief Community Engagement, 2022
Chief Community Engagement → Chief Community Engagement Officer, 2024
On filings since 2019
40 hrs/week
$101K (2019) → $151K (2024)
Kenneth Alexander Kahtava
Chief Operating Officer
Chief Business Officer → Chief Operating Officer, 2024
On filings since 2022
40 hrs/week
$109K (2022) → $191K (2024)
Agnes M. Mestrich
Chief Financial Officer
New on the 2024 filing
40 hrs/week
$169K (2024)
Carolyn Lloyd
Chief Development Officer
New on the 2024 filing
40 hrs/week
$145K (2024)
Amy Z. Bekier
Board Member
On filings since 2019
10 hrs/week
No compensation reported
Christine Ford
Former Secretary
Secretary → Former Secretary, 2024
On filings since 2019
10 hrs/week
No compensation reported
Ellen K. Hannan
Former Treasurer
Treasurer → Former Treasurer, 2024
On filings since 2019
10 hrs/week
No compensation reported
George Pollock Jr.
Treasurer
Board Member → Treasurer, 2024
On filings since 2019
10 hrs/week
No compensation reported
Howard L. Chabner JD
Vice Chairman
On filings since 2019
10 hrs/week
No compensation reported
Jack Gerblick
Board Member
On filings since 2019
1 hr/week
No compensation reported
Lee Frank Kolakowski PhD
Board Member
On filings since 2019
10 hrs/week
No compensation reported
Michelle Helen Mackay
Board Member
On filings since 2019
1 hr/week
No compensation reported
Neil Andrew Solomon Md Facp
Board Member
On filings since 2019
1 hr/week
No compensation reported
Stuart Lai
Board Member
On filings since 2019
1 hr/week
No compensation reported
William R. Lewis III MD
Board Member
On filings since 2019
1 hr/week
No compensation reported
Bruce Ryskamp
Board Member
On filings since 2020
1 hr/week
No compensation reported
Linda Laurello
Board Member
On filings since 2020
1 hr/week
No compensation reported
Chris Mancill
Board Member
New on the 2024 filing
1 hr/week
No compensation reported
Jason Shi
Board Member
New on the 2024 filing
1 hr/week
No compensation reported
Mel Hayes
Board Member
New on the 2024 filing
1 hr/week
No compensation reported
Robert Humphreys Jr.
Board Member
New on the 2024 filing
1 hr/week
No compensation reported
William Sarraille
Board Member
New on the 2024 filing
1 hr/week
No compensation reported
Former officers (10)
- Former: Jamshid Arjomand (2019–2023) — Chief Science Officer
- Former: Lisa Schimmel (2019–2023) — CFO
- Former: Marie Morrell (2019–2023) — Board Member
- Former: David Rubin (2020–2023) — Board Member
- Former: Carden Wyckoff (2019–2022) — Former Board Member
- Former: Leigh Reynolds (2022) — Director of Research & Patient
- Former: David J. Glass MD (2019–2020) — Former Board Member
- Former: Thomas F. Ruekert (2019–2020) — Former Board Member
- Former: Linda Laurello-Bambarger (2019) — Board Member
- Former: Louis M. Kunkel PhD (2019) — Former Board Member
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $227K, to Mark Stone (CEO & President). 7 officers or directors reported compensation on that filing.
Frequently asked questions about FSHD Society
How much does FSHD Society give each year?
FSHD Society reported $146K in grants paid in 2024 on its 2024 IRS Form 990, as a total without an itemized list of grants. In 2023 it reported $405K in grants paid.
How large is FSHD Society?
FSHD Society reported $5.6M in total assets on its 2024 IRS Form 990. Its revenue that year was $4.9M.
What is FSHD Society?
FSHD Society is a public charity focused on Medical Research, based in Randolph, MA. It holds $5.6M in total assets as of 2024.
Where does FSHD Society operate?
FSHD Society has awarded grants in Colorado, Connecticut, Kansas, Massachusetts, Maryland, Minnesota, Missouri, Nevada, New York, Ohio, Utah.
What is FSHD Society's EIN?
FSHD Society's EIN (Employer Identification Number) is 52-1762747. IRS Form 990 filing data is available on this page for 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Added Form 990 for fiscal year 2019 (received by the IRS April 2, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS April 1, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS April 5, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS March 30, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS July 24, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS May 13, 2025)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in FSHD Society's focus areas in our free grants database
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Figures come from FSHD Society's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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