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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$5.6M
+2.7% YoY
Annual Giving
$236K
+84.1% YoY
Grant Count
4
+33.3% YoY
Avg Grant Size
$59K
+38.1% YoY
About The Barth Syndrome Foundation
Based on IRS filings
The Barth Syndrome Foundation is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in LARCHMONT, NY. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $5.6M in total assets. In 2024, it awarded 4 grants totaling $236K. Net investment income was $257K.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $5,640,640 | $5,491,330 | $5,372,000 |
| Revenue | $1,940,887 | $1,334,806 | $1,387,712 |
| Expenses | $2,093,891 | $1,421,717 | $1,367,327 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $256,783 | $106,410 | $-9,426 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2024
Grant Size Distribution
18 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Duke University ($99,519), New York University ($75,000), Uc Boulder ($40,000).
| Recipient | Purpose | Amount |
|---|---|---|
| DUKE UNIVERSITY DURHAM, NC | CARDIAC AND SKELETAL MUSCLE MYOFILAMENT ACTIVATORS FOR THE TREATMENT OF BARTH SYNDROME | $99,519 |
| NEW YORK UNIVERSITY NEW YORK, NY | MECHANISM OF CARDIOLIPIN REMODELING BY TAFAZZIN | $75,000 |
| NEW YORK UNIVERSITY NEW YORK, NY | ARRHYTHMIA PROJECT | $21,227 |
| UC BOULDER BOULDER, CO | INVESTIGATING THE MOLECULAR BASIS FOR THE IMPAIRED MITOCHONDRIAL DYNAMICS IN BARTH SYNDROME | $40,000 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| BRUCE DEVELLE | BOARD MEMBER | 2 | — |
| JONATHAN STOKES | BOARD MEMBER | 2 | — |
| MEGAN BRANAGH | BOARD MEMBER | 2 | — |
| MICHELLE FLOREZ | BOARD MEMBER | 2 | — |
| NINA RUSSELL | BOARD MEMBER | 2 | — |
| PETER VAN LOO | BOARD MEMBER | 2 | — |
| MIRIAM GREENBERG | BOARD MEMBER | 2 | — |
| ANDREW BUDDEMEYER TERM 24 | BOARD MEMBER | 2 | — |
| FLORENCE MANNES TERM 24 | BOARD MEMBER | 2 | — |
| KATHERINE MCCURDY | CHAIR | 2 | — |
| JAMES BAFFA | VICE CHAIR | 2 | — |
| MARK GREENE | TREASURER | 2 | — |
| BRANDI DAGUE | SECRETARY | 2 | — |
| EMILY MILLIGAN | EXECUTIVE DIRECTOR | 35 | $227,314 |
| LINDSAY MARJORAM | DIRECTOR OF RESEARCH | 35 | $174,980 |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is The Barth Syndrome Foundation?
The Barth Syndrome Foundation is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in LARCHMONT, NY. It holds $5.6M in total assets as of 2024.
How large is The Barth Syndrome Foundation?
As of 2024, The Barth Syndrome Foundation holds $5.6M in total assets with $1.9M in annual revenue. It awarded 4 grants totaling $236K in 2024.
Where does The Barth Syndrome Foundation operate?
The Barth Syndrome Foundation has awarded grants in Colorado, Connecticut, Massachusetts, North Carolina, New York, Texas, Virginia.
What size grants does The Barth Syndrome Foundation award?
In 2024, The Barth Syndrome Foundation awarded 4 grants totaling $236K — an average of about $59K per grant, based on its IRS Form 990 filings.
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 2020–2024.
Explore Open Grants
Browse active grant opportunities in The Barth Syndrome Foundation's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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