The Barth Syndrome Foundation
The Barth Syndrome Foundation is an engaged, global community whose mission is saving lives through education, advances in treatments, and finding a cure for barth syndrome.
The Barth Syndrome Foundation at a glance
In short: The Barth Syndrome Foundation gave $332K across 4 grants in 2025 (avg $83K), top state Massachusetts. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $332,458
- +41.0% vs 2024
- Grants made (2025)
- 4
- +0.0% vs 2024
- Average grant
- $83,115
- +41.0% vs 2024
- Median grant
- $84,177
- Total assets
- $6,023,549
- +6.8% vs 2024
- Primary geography
- Massachusetts (39% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who The Barth Syndrome Foundation funds
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2025
The largest 2025 recipient was Boston Childrens Hospital ($131K). Together the top 4 received $332K.
Grant Size Distribution
18 grants across all recorded years
The most common grant size was in the $50–100K range: 9 grants of 18 (50%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 4 itemized grants.
States
Cities
How The Barth Syndrome Foundation gives
- Giving held roughly steady from 2022 to 2025 (+10%). 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 2025, annual grant giving ranged from $128K (2023) to $337K (2019). In 2025 it made 4 grants totaling $332K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Boston Childrens Hospital Boston, MA | Gene Therapy | $130,507 |
| New York University New York, NY | Arrhythmia Project | $88,353 |
| Indiana University Bloomington, IN | Role of p53 pathway in barth syndrome patient-tailored mouse allele | $80,000 |
| University of Pittsburgh Pittsburgh, PA | Arrhythmia Project | $33,598 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $6,023,549 | $2,155,852 | $2,061,095 | $332,458 | 4 | $243,891 |
| 2024 | $5,640,640 | $1,940,887 | $2,093,891 | $235,746 | 4 | $256,783 |
| 2023 | $5,491,330 | $1,334,806 | $1,421,717 | $128,032 | 3 | $106,410 |
| 2022 | $5,372,000 | $1,387,712 | $1,367,327 | $302,773 | 4 | $-9,426 |
| 2021 | $5,986,941 | $1,563,641 | $1,010,732 | $184,189 | 3 | $349,305 |
| 2020 | $5,553,199 | $1,267,165 | $1,001,933 | $205,000 | 4 | $104,959 |
| 2019 | $4,993,243 | $1,135,762 | $1,301,376 | $336,917 | 5 | $200,113 |
About The Barth Syndrome Foundation
Based on IRS filings
The Barth Syndrome Foundation is a public charity, based in Larchmont, NY. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $6.0M in total assets. In 2025, it awarded 4 grants totaling $332K. Net investment income was $244K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
The Barth Syndrome Foundation is led by Emily Milligan, Executive Director on every filing since 2019; 4 of 17 officers listed in 2025 are compensated.
Officers on the 2025 filing
Emily Milligan
Executive Director
On filings since 2019
35 hrs/week
$190K (2019) → $236K (2025)
Katherine McCurdy
Chair
On filings since 2020
2 hrs/week
No compensation reported
Lindsay Marjoram
Director of Research
On filings since 2024
35 hrs/week
$175K (2024) → $207K (2025)
Laura Duvelius
Director of Fundraising
New on the 2025 filing
35 hrs/week
$104K (2025)
Yong Lin Huang
Research Associate, Research Engagement & Assets
New on the 2025 filing
35 hrs/week
$110K (2025)
Brandi Dague
Secretary
Board Member → Secretary, 2024
On filings since 2019
2 hrs/week
No compensation reported
Bruce J. Develle
Board Member
On filings since 2019
2 hrs/week
No compensation reported
Megan Branagh
Board Member
On filings since 2019
2 hrs/week
No compensation reported
Michelle Florez
Board Member
On filings since 2019
2 hrs/week
No compensation reported
Peter Van Loo
Board Member
On filings since 2019
2 hrs/week
No compensation reported
James Baffa
Vice Chair
Acting Secretary → Secretary, 2021
Secretary → Vice Chair, 2024
On filings since 2020
2 hrs/week
No compensation reported
Nina Russell
Board Member
On filings since 2020
2 hrs/week
No compensation reported
Mark Greene
Treasurer
Board Member → Treasurer, 2023
On filings since 2022
2 hrs/week
No compensation reported
Miriam Greenberg
Board Member
On filings since 2022
2 hrs/week
No compensation reported
Jonathan Stokes
Board Member
On filings since 2023
2 hrs/week
No compensation reported
Stacey Woodward
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Steve Graessle
Board Member
New on the 2025 filing
2 hrs/week
No compensation reported
Former officers (12)
- Former: Florence Mannes (2019–2024) — Board Member · Filing note: Term ended 24
- Former: Andrew Buddemeyer (2021–2024) — Board Member · Filing note: Term ended 24
- Former: Kevin G. Woodward (2019–2022) — Treasurer
- Former: Erik Lontok (2020–2022) — Director of Research
- Former: Maryanne Chrisant (2021–2022) — Board Member
- Former: David Axelrod MD (2019–2020) — Board Member
- Former: John Wilkins (2019–2020) — Secretary
- Former: Matthew Blumenthal (2019–2020) — Board Member
- Former: Nicole Derusha-Mackey (2019–2020) — Board Member
- Former: Susan A. McCormack (2019–2020) — Chair
- Former: Catharine Lynne Ritter (2019) — Board Member Term
- Former: Matthew Toth (2019) — Director of Science
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $236K, to Emily Milligan (Executive Director). 4 officers or directors reported compensation on that filing.
Frequently asked questions about The Barth Syndrome Foundation
How much does The Barth Syndrome Foundation give each year?
The Barth Syndrome Foundation gave $332K across 4 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $236K across 4 grants.
What is The Barth Syndrome Foundation's typical grant size?
The Barth Syndrome Foundation's median grant in 2025 was $84,177, and its average grant was $83,115, across 4 grants on its 2025 IRS Form 990.
Where does The Barth Syndrome Foundation give grants?
The Barth Syndrome Foundation's top state is Massachusetts, with 39% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were New York (27%) and Indiana (24%).
Does The Barth Syndrome Foundation give general operating support?
Not in 2025: none of the 4 grants with a stated purpose on The Barth Syndrome Foundation's 2025 IRS Form 990 were described as general or operating support.
How large is The Barth Syndrome Foundation?
The Barth Syndrome Foundation reported $6.0M in total assets on its 2025 IRS Form 990. Its revenue that year was $2.2M.
What is The Barth Syndrome Foundation's EIN?
The Barth Syndrome Foundation's EIN (Employer Identification Number) is 22-3755704. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(4)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2024 (received by the IRS July 8, 2025)
- Added Form 990 for fiscal year 2019 (received by the IRS June 10, 2020)
- Added Form 990 for fiscal year 2025 (received by the IRS July 13, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work The Barth Syndrome Foundation funds
Philanthropy, Voluntarism & Grantmaking Open opportunities, soonest deadline first.
- Nixa Affiliate Grantmaking Program Up to US $10,000 · Due October 19, 2026
- Community and School Grants $28,000 total pool; 10-15 grants expected · Due October 19, 2026
- Mary Pinola/Crescenta Valley Chamber Education Fund $500 - $5,000 for ongoing programs; up to $15,000 for Strategic Initiative Grants · Due October 19, 2026
Explore Open Grants
Browse active grant opportunities in The Barth Syndrome Foundation's focus areas in our free grants database
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