The Barth Syndrome Foundation logo

The Barth Syndrome Foundation

LARCHMONT, NY EIN: 22-3755704 Website

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.

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

7states

Cities

AustinBostonBoulderCollege StationDallasDurhamFort CollinsNew YorkRichmondStony BrookStorrsWinstonsalem

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$576K$1M$2M$2M20202021202220232024
Metric202420232022
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

$0$76K$151K$227K$303K4 grants20203 grants20214 grants20223 grants20234 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 4 recipients in 2024

DUKE UNIVERSITY$100KNEW YORK UNIVERSITY$75KUC BOULDER$40KNEW YORK UNIVERSITY$21K

Grant Size Distribution

18 grants across all recorded years

5<$50K11$50–100K2$100–250K$250–500K$500K–1M$1–5M$5M+

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).

RecipientPurposeAmount
DUKE UNIVERSITY DURHAM, NCCARDIAC AND SKELETAL MUSCLE MYOFILAMENT ACTIVATORS FOR THE TREATMENT OF BARTH SYNDROME$99,519
NEW YORK UNIVERSITY NEW YORK, NYMECHANISM OF CARDIOLIPIN REMODELING BY TAFAZZIN$75,000
NEW YORK UNIVERSITY NEW YORK, NYARRHYTHMIA PROJECT$21,227
UC BOULDER BOULDER, COINVESTIGATING 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

EMILY MILLIGANEXECUTIVE DIRECTOR$227KLINDSAY MARJORAMDIRECTOR OF RESEARCH$175K

From 2024 filing

NameTitleHoursCompensation
BRUCE DEVELLEBOARD MEMBER2
JONATHAN STOKESBOARD MEMBER2
MEGAN BRANAGHBOARD MEMBER2
MICHELLE FLOREZBOARD MEMBER2
NINA RUSSELLBOARD MEMBER2
PETER VAN LOOBOARD MEMBER2
MIRIAM GREENBERGBOARD MEMBER2
ANDREW BUDDEMEYER TERM 24BOARD MEMBER2
FLORENCE MANNES TERM 24BOARD MEMBER2
KATHERINE MCCURDYCHAIR2
JAMES BAFFAVICE CHAIR2
MARK GREENETREASURER2
BRANDI DAGUESECRETARY2
EMILY MILLIGANEXECUTIVE DIRECTOR35$227,314
LINDSAY MARJORAMDIRECTOR OF RESEARCH35$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.

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Data last updated April 2026. Sourced from IRS Form 990-PF filings.

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