Skip to content
Nonprofiteer
← All organizations

BARTH SYNDROME FOUNDATION INC

EIN 22-3755704 LARCHMONT, NY

Revenue 2025
$2,155,852
Expenses 2025
$2,061,095

Program services were 77.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
T30
Classification
1200
Street
2005 PALMER AVENUE 1033

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

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.

Activities or mission (Part I)

1)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENTS AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES.

  • 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 FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.

    Expenses $966,691 · Grants $512,458

  • COMMUNICATION AND AWARENESS REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME.

    Expenses $194,237

  • 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 AND TREATMENT ACCESS AND DRUG DEVELOPMENT POLICY

    Expenses $386,587

  • BSF REGIONAL MEETINGS - CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME, SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY, CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. OTHER PROGRAM SERVICES RELATED TO AWARENESS INCLUDE ADVOCACY AND AWARENESS AND FAMILY SERVICES

    Expenses $43,648 · Revenue $5,559

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • BRUCE DEVELLE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • JONATHAN STOKES

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • MEGAN BRANAGH

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • MICHELLE FLOREZ

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • NINA RUSSELL

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • PETER VAN LOO

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • MIRIAM GREENBERG

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • STEVE GRAESSLE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • STACEY WOODWARD

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • KATHERINE MCCURDY

    CHAIR

    Total calculated
    $0
    Hours/week
    2

  • JAMES BAFFA

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    2

  • MARK GREENE

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • BRANDI DAGUE

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • EMILY MILLIGAN

    EXECUTIVE DIRECTOR

    Total calculated
    $259,135
    From this org
    $235,989
    From related orgs
    $0
    Other
    $23,146
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $200,989
    Bonus
    $35,000
    Other
    $0
    Deferred
    $9,978
    Nontaxable benefits
    $13,168
    Filer's total
    $259,135

  • LINDSAY MARJORAM

    DIRECTOR OF RESEARCH

    Total calculated
    $215,362
    From this org
    $206,889
    From related orgs
    $0
    Other
    $8,473
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $179,389
    Bonus
    $27,500
    Other
    $0
    Deferred
    $8,408
    Nontaxable benefits
    $65
    Filer's total
    $215,362

  • YONG LIN HUANG

    RESEARCH ASSOCIATE, RESEARCH ENGAGEMENT AND ASSETS

    Total calculated
    $114,274
    From this org
    $109,767
    From related orgs
    $0
    Other
    $4,507
    Hours/week
    35

  • LAURA DUVELIUS

    DIRECTOR OF FUNDRAISING

    Total calculated
    $107,448
    From this org
    $103,592
    From related orgs
    $0
    Other
    $3,856
    Hours/week
    35

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $2,155,852
    Expenses
    $2,061,095
    Contributions
    $1,908,318
    Grants paid
    $512,458
  • 2024
    Revenue
    $1,940,887
    Expenses
    $2,093,891
    Contributions
    $1,674,742
    Grants paid
    $432,746
  • 2023
    Revenue
    $1,334,806
    Expenses
    $1,421,717
    Contributions
    $1,228,396
    Grants paid
    $283,038
  • 2022
    Revenue
    $1,387,712
    Expenses
    $1,367,327
    Contributions
    $1,397,138
    Grants paid
    $302,773

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $1,563,641
    Expenses
    $1,010,732
    Assets (EOY)
    $5,986,941

  • 2020 · 990

    Revenue
    $1,267,165
    Expenses
    $1,001,933
    Assets (EOY)
    $5,553,199

  • 2019 · 990

    Revenue
    $1,135,762
    Expenses
    $1,301,376
    Assets (EOY)
    $4,993,243

  • 2018 · 990

    Revenue
    $2,291,095
    Expenses
    $1,155,310
    Assets (EOY)
    $4,750,350

  • 2017 · 990

    Revenue
    $963,264
    Expenses
    $930,832
    Assets (EOY)
    $3,971,455

  • 2016 · 990

    Revenue
    $1,082,407
    Expenses
    $1,231,511
    Assets (EOY)
    $3,793,936

  • 2015 · 990

    Revenue
    $3,165,453
    Expenses
    $1,232,310
    Assets (EOY)
    $3,913,906

  • 2014 · 990

    Revenue
    $1,107,097
    Expenses
    $1,195,629
    Assets (EOY)
    $1,874,325

  • 2013 · 990

    Revenue
    $824,655
    Expenses
    $796,952
    Assets (EOY)
    $1,908,550

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $956,309
    Assets (EOY)
    $1,909,785

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

  • BOSTON CHILDRENS HOSPITAL

    $130,507

    2025 GENE THERAPY

  • TEXAS HEALTH CENTER

    $100,000

    2022 ALCAT1 AS A NOVEL TARGET FOR THE TREATMENT OF CARDIOMYOPATHY IN BARTH SYNDROME

  • DUKE UNIVERSITY

    $99,519

    2024 CARDIAC AND SKELETAL MUSCLE MYOFILAMENT ACTIVATORS FOR THE TREATMENT OF BARTH SYNDROME

  • NEW YORK UNIVERSITY

    $88,353

    2025 ARRHYTHMIA PROJECT

  • COLORADO STATE UNIVERSITY

    $82,400

    2022 FEEDING THE STARVING HEART IN BARTH SYNDROME

  • INDIANA UNIVERSITY

    $80,000

    2025 ROLE OF P53 PATHWAY IN BARTH SYNDROME PATIENT-TAILORED MOUSE ALLELE

  • NEW YORK UNIVERSITY

    $75,000

    2024 MECHANISM OF CARDIOLIPIN REMODELING BY TAFAZZIN

  • BOSTON CHILDREN'S HOSPITAL

    $69,300

    2023 OPTIMIZATION OF BARTH SYNDROME GENE THERAPY

  • BOSTON CHILDREN'S HOSPITAL

    $68,750

    2022 OPTIMIZATION OF BARTH SYNDROME GENE THERAPY

  • NYU REGISTRY ARRHYTHMIA STUDY

    $51,623

    2022 ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 26 October 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.