Nonprofit · EIN 52-1762747
FSHD SOCIETY
Also known as FSH
Tax-exempt · ABINGTON, MA 02351
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $4,942,571 | $5,475,276 | -$532,705 | $5,592,191 | $893,399 | $4,698,792 |
| December 31, 2023 | 990 | $4,455,414 | $4,311,066 | $144,348 | $6,421,254 | $1,406,571 | $5,014,683 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $4,438,901
- Program service revenue
- $302,974
- Investment income
- $122,391
- Net income from fundraising events
- $78,305
- Other revenue
- $78,305
Expenses
- Grants and similar amounts paid
- $278,084
- Compensation of officers, directors and key employees
- $676,505
- Other salaries and wages
- $1,569,719
- Salaries, compensation and benefits (total)
- $2,701,795
- Professional fundraising fees
- $0
- Legal fees
- $106,792
- Accounting fees
- $22,504
- Travel
- $407,713
- Depreciation
- $36,076
- Program services (functional)
- $4,280,854
- Management and general (functional)
- $564,550
- Fundraising (functional)
- $629,872
Balance sheet and other
- Total assets, start of year
- $6,421,254
- Total assets, end of year
- $5,592,191
- Total liabilities, end of year
- $893,399
- Net assets, end of year
- $4,698,792
- Publicly traded securities
- $2,316,091
- Net assets without donor restrictions
- $4,583,881
- Net assets with donor restrictions
- $114,911
- Gross receipts
- $5,005,621
- Employees
- 23
- Volunteers
- 150
- Year formed
- 1991
- State of legal domicile
- DC
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| MARK STONE | CEO & PRESIDENT Officer | 40 | $226,757 | $16,908 |
| KENNETH ALEXANDER KAHTAVA | CHIEF OPERATING OFFICER Key employee | 40 | $190,956 | $27,974 |
| AGNES M MESTRICH | CHIEF FINANCIAL OFFICER Officer | 40 | $168,829 | $24,325 |
| CAROLYN LLOYD | CHIEF DEVELOPMENT OFFICER Highest-paid employee | 40 | $145,482 | $15,991 |
| BETH JOHNSTON | CHIEF COMMUNITY ENGAGEMENT OFFICER Highest-paid employee | 40 | $151,086 | $6,835 |
| AMANDA HILL | SENIOR DIRECTOR OF RESEARCH AND CARE Highest-paid employee | 40 | $120,469 | $24,177 |
| JUNE KINOSHITA | DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT Highest-paid employee | 40 | $110,048 | $5,022 |
| CHRISTINE FORD | FORMER SECRETARY Trustee or director, Officer | 10 | $0 | $0 |
| ELLEN K HANNAN | FORMER TREASURER Trustee or director, Officer | 10 | $0 | $0 |
| GEORGE POLLOCK JR | TREASURER Trustee or director, Officer | 10 | $0 | $0 |
| HOWARD L CHABNER JD | VICE CHAIRMAN Trustee or director, Officer | 10 | $0 | $0 |
| JAMES A CHIN SR | CHAIRMAN Trustee or director, Officer | 10 | $0 | $0 |
| MEL HAYES | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| LEE FRANK KOLAKOWSKI PHD | BOARD MEMBER Trustee or director | 10 | $0 | $0 |
| LINDA LAURELLO | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
11 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ROBERT HUMPHREYS JR | BOARD MEMBER Trustee or director | 1 | $0 |
| MICHELLE HELEN MACKAY | BOARD MEMBER Trustee or director | 1 | $0 |
| NEIL ANDREW SOLOMON MD FACP | BOARD MEMBER Trustee or director | 1 | $0 |
| STUART LAI | BOARD MEMBER Trustee or director | 1 | $0 |
| CHRIS MANCILL | BOARD MEMBER Trustee or director | 1 | $0 |
| WILLIAM R LEWIS III MD | BOARD MEMBER Trustee or director | 1 | $0 |
| WILLIAM SARRAILLE | BOARD MEMBER Trustee or director | 1 | $0 |
| BRUCE RYSKAMP | BOARD MEMBER Trustee or director | 1 | $0 |
| AMY Z BEKIER | BOARD MEMBER Trustee or director | 10 | $0 |
| JACK GERBLICK | BOARD MEMBER Trustee or director | 1 | $0 |
| JASON SHI | BOARD MEMBER Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 23 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| JAMSHID ARJOMAND | CHIEF SCIENCE OFFICER Key employee | 40 | $263,780 | $29,984 |
| MARK STONE | CEO & PRESIDENT Officer | 40 | $170,858 | $28,703 |
| KENNETH ALEXANDER KAHTAVA | CHIEF BUSINESS OFFICER Highest-paid employee | 40 | $144,706 | $36,350 |
| LISA SCHIMMEL | CFO Officer | 40 | $126,407 | $34,984 |
| BETH JOHNSTON | CHIEF COMMUNITY ENGAGEMENT Highest-paid employee | 40 | $134,896 | $15,057 |
| AMANDA HILL | DIRECTOR OF CLINICAL RESEARCH Highest-paid employee | 40 | $107,959 | $32,308 |
| JUNE KINOSHITA | SENIOR DIRECTOR OF RESEARC Highest-paid employee | 40 | $102,500 | $12,975 |
| JAMES A CHIN SR | CHAIRMAN Trustee or director, Officer | 10 | $0 | $0 |
| HOWARD L CHABNER JD | VICE CHAIRMAN Trustee or director, Officer | 10 | $0 | $0 |
| CHRISTINE FORD | SECRETARY Trustee or director, Officer | 10 | $0 | $0 |
| ELLEN K HANNAN | TREASURER Trustee or director, Officer | 10 | $0 | $0 |
| AMY Z BEKIER | BOARD MEMBER Trustee or director | 10 | $0 | $0 |
| STUART LAI | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| DAVID RUBIN | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| WILLIAM R LEWIS III MD | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| MICHELLE HELEN MACKAY | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| LEE FRANK KOLAKOWSKI PHD | BOARD MEMBER Trustee or director | 10 | $0 | $0 |
| LINDA LAURELLO | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| GEORGE POLLOCK JR | BOARD MEMBER Trustee or director | 10 | $0 | $0 |
| NEIL ANDREW SOLOMON MD FACP | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| MARIE MORRELL | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| JACK GERBLICK | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| BRUCE RYSKAMP | BOARD MEMBER Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 1035 BEDFORD ST PMB 1073, ABINGTON, MA 02351-3015
- Principal officer (990 for 2024)
- MARK A STONE, 75 NORTH MAIN STREET 1073, RANDOLPH, MA 02368
- Signed the 990
- MARK A STONE, CEO & PRESIDENT
- Phone
- (781) 301-6060
- Website
- WWW.FSHDSOCIETY.ORG
- Return prepared by
- SMITH SULLIVAN & BROWN PC
Mission
FIND TREATMENTS AND A CURE FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) WHILE EMPOWERING OUR FAMILIES.
Program accomplishments
- 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.Expenses $1,945,709 · grants $146,046 · revenue $200,893
- 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 $2,335,145 · grants $132,038 · revenue $102,081
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 52-1762747
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1992
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H20Z)
- Assets (IRS master file)
- $5,592,191
- Income (IRS master file)
- $5,005,621
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $4,942,571 | $5,475,276 | $5,592,191 | IRS |
| 990 | December 2023 | $4,455,414 | $4,311,066 | $6,421,254 | XML |
| 990 | December 2022 | $3,508,920 | $4,712,959 | $6,079,315 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 52-1762747).
Questions about FSHD SOCIETY
- What is the EIN of FSHD SOCIETY?
- The employer identification number (EIN) of FSHD SOCIETY is 52-1762747.
- Is FSHD SOCIETY tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1992.
- Are donations to FSHD SOCIETY tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does FSHD SOCIETY file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of FSHD SOCIETY due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did FSHD SOCIETY last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of FSHD SOCIETY?
- The 990 for the year ended December 31, 2024 names MARK A STONE.
- Who are the officers and directors of FSHD SOCIETY?
- The 990 for the year ended December 31, 2024 lists 26 people; 7 received compensation from the organization, the highest $226,757 (MARK STONE, CEO & PRESIDENT).
- How much revenue does FSHD SOCIETY have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $4,942,571, expenses of $5,475,276 and total assets of $5,592,191 at year end.
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All nonprofits in ABINGTON · Massachusetts · Medical research