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Nonprofiteer
← BARTH SYNDROME FOUNDATION INC

Form 990 for tax year 2025

Filed by BARTH SYNDROME FOUNDATION INC.

Totals

Total revenue
$2,155,852
Total expenses
$2,061,095
Contributions and grants received
$1,908,318
Grants paid
$512,458
Program service revenue
$0
Investment income
$243,891
Other revenue
$3,643
Total assets, end of year
$6,023,549
Total liabilities, end of year
$478,161
Net assets or fund balances, end of year
$5,545,388
Program services expenses (Part IX)
$1,591,163
Management and general expenses
$249,279
Fundraising expenses
$220,653
Program service expenses (Part III)
$1,591,163

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

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $298,157

  • 1f · All other contributions, gifts and grants

    $1,610,161

  • 1g · Noncash contributions included above

    $38,224

  • 3 · Investment income

    total $175,316 · excluded $175,316

  • 7a · Gross sales of assets other than inventory

    securities $652,975

  • 7b · Less cost or other basis and sales expenses

    securities $584,400

  • 7c · Gain or loss

    securities $68,575

  • 7d · Net gain or loss

    total $68,575 · excluded $68,575

  • 8a · Fundraising events: gross income

    $22,500

  • 8a · Fundraising events: contributions included on line 1c

    $298,157

  • 8b · Fundraising events: direct expenses

    $24,416

  • 8c · Net income from fundraising events

    total -$1,916 · excluded -$1,916

  • 11a · Other revenue: OTHER REVENUE

    total $5,559 · related or exempt $5,559

  • 11e · Other revenue, total

    $5,559

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $332,458 · program services $332,458

  • 3 · Grants to foreign organizations and individuals

    total $180,000 · program services $180,000

  • 5 · Compensation of officers, directors and key employees

    total $259,135 · program services $220,265 · management and general $25,913 · fundraising $12,957

  • 7 · Other salaries and wages

    total $631,228 · program services $466,510 · management and general $65,928 · fundraising $98,790

  • 9 · Other employee benefits

    total $41,871 · program services $32,191 · management and general $4,290 · fundraising $5,390

  • 10 · Payroll taxes

    total $69,226 · program services $51,342 · management and general $7,151 · fundraising $10,733

  • 11b · Fees: legal

    total $5,493 · program services $5,493

  • 11c · Fees: accounting

    total $64,616 · management and general $64,616

  • 11g · Fees: other

    total $208,116 · program services $131,991 · management and general $18,377 · fundraising $57,748

  • 13 · Office expenses

    total $102,418 · program services $33,831 · management and general $41,837 · fundraising $26,750

  • 17 · Travel

    total $68,202 · program services $58,107 · management and general $4,643 · fundraising $5,452

  • 23 · Insurance

    total $8,673 · management and general $8,673

  • 24a · Other expenses: PROGRAM EXPENSES

    total $46,801 · program services $46,801

  • 24b · Other expenses: PRINTING AND PUBLICATIO

    total $22,564 · program services $21,733 · fundraising $831

  • 24c · Other expenses: DUES AND FEES

    total $10,411 · program services $3,354 · management and general $6,905 · fundraising $152

  • 24d · Other expenses: AUDIO VISUAL

    total $8,850 · program services $7,000 · fundraising $1,850

  • 24e · All other expenses

    total $1,033 · program services $87 · management and general $946

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $720,374 · end of year $397,009

  • 3 · Pledges and grants receivable

    beginning of year $100 · end of year $24,400

  • 9 · Prepaid expenses and deferred charges

    beginning of year $34,906 · end of year $54,480

  • 11 · Investments: publicly traded securities

    beginning of year $4,860,260 · end of year $5,493,390

  • 13 · Investments: program-related

    beginning of year $25,000 · end of year $25,000

  • 15 · Other assets

    beginning of year $0 · end of year $29,270

  • 17 · Accounts payable and accrued expenses

    beginning of year $163,444 · end of year $179,106

  • 18 · Grants payable

    beginning of year $256,910 · end of year $299,055

  • 27 · Net assets without donor restrictions

    beginning of year $1,121,367 · end of year $1,563,722

  • 28 · Net assets with donor restrictions

    beginning of year $4,098,919 · end of year $3,981,666

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.

Listed in Part VII

  • 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.

Schedule J

Answered yes

  • 3 · Compensation committee
  • 3 · Form 990 of other organizations
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Provenance

Return type
form_990
Tax year
2025
Filed
6 July 2026
IRS schema version
2025v4.2
Source object
202621949349301537

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