Mission
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.
Public Charity
THE BARTH SYNDROME FOUNDATION
Based in LARCHMONT, NY, THE BARTH SYNDROME FOUNDATION operates as a Public Charity. The organization reported $2.2M in revenue, $2.1M in expenses, $6.0M in total assets for fiscal year 2025. Imperigo tracks 36 reported grants from this foundation totaling approximately $2.1M.
EIN: 223755704
LARCHMONT, NY
Public Foundations
NTEE: T30
Latest filing: 2025
Total Revenue$2.2M
Total Expenses$2.1M
Total Assets$6.0M
Grants Given36
Grant Total$2.1M
Filing Years2021–2025
Where $100 goes at The Barth Syndrome Foundation
How The Barth Syndrome Foundation divides every $100 it spends, from its own Form 990 filings, averaged across 9 years.
$78
Programs
the work itself
$13
Management
running the organization
$9
Fundraising
raising the next dollar
Inside the $78 for programs
$47
The barth syndrome science, medicine & research program in 2025 was comprised of a) the bsf research program to foster scientific and clinical investigations into barth syndrome to…
$19
Bsf builds awareness of barth syndrome to improve diagnosis and care, while advancing advocacy efforts that amplify patient voices, mobilize our patient community, and support progress in research…
$10
Communication and awareness represents awareness programs designed to ensure families, physicians, and researchers are aware of barth syndrome
Plus 1 more program. Cost per person served and the full program breakdown are on the full profile.
Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Before you apply to The Barth Syndrome Foundation
Who to contact, what to include, deadlines, typical grant size and geographic focus are available with membership.
Sample Grants Given
GENE THERAPY
$130,507
ARRHYTHMIA PROJECT
$88,353
ROLE OF P53 PATHWAY IN BARTH SYNDROME PATIENT-TAILORED MOUSE ALLELE
$80,000
ARRHYTHMIA PROJECT
$33,598
CARDIAC AND SKELETAL MUSCLE MYOFILAMENT ACTIVATORS FOR THE TREATMENT OF BARTH SYNDROME
$99,519
Showing up to 5 of 36 total records — full history available with membership.
Officers & Directors
SECRETARY
Brandi Dague
BOARD MEMBER
Bruce Develle
EXECUTIVE DIRECTOR
Emily Milligan
VICE CHAIR
James Baffa
BOARD MEMBER
Jonathan Stokes
CHAIR
Katherine Mccurdy
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $2.2M | $2.1M | $6.0M |
| 2024 | $1.9M | $2.1M | $5.6M |
| 2023 | $1.3M | $1.4M | $5.5M |
| 2022 | $1.4M | $1.4M | $5.4M |
| 2021 | $1.6M | $1.0M | $6.0M |
Between 2021 and 2025, reported annual revenue grew from $1.6M to $2.2M (+38%), with total assets most recently reported at $6.0M.
Interactive year-over-year charts and full filing details available with membership.
Grant Geography
Grants from this foundation were reported to recipients in AL, CA, CO, CT, FL, IN, and 4 other states.
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Full geographic grant map with state-by-state breakdown available with membership.