Nonprofit · EIN 22-3755704
BARTH SYNDROME FOUNDATION INC
Tax-exempt · LARCHMONT, NY 10538
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $2,155,852 | $2,061,095 | $94,757 | $6,023,549 | $478,161 | $5,545,388 |
| December 31, 2024 | 990 | $1,940,887 | $2,093,891 | -$153,004 | $5,640,640 | $420,354 | $5,220,286 |
| December 31, 2023 | 990 | $1,334,806 | $1,421,717 | -$86,911 | $5,491,330 | $205,976 | $5,285,354 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $1,908,318
- Program service revenue
- $0
- Investment income
- $243,891
- Net gain from sales of assets
- $68,575
- Net income from fundraising events
- -$1,916
- Other revenue
- $3,643
Expenses
- Grants and similar amounts paid
- $512,458
- Compensation of officers, directors and key employees
- $259,135
- Other salaries and wages
- $631,228
- Salaries, compensation and benefits (total)
- $1,001,460
- Professional fundraising fees
- $0
- Legal fees
- $5,493
- Accounting fees
- $64,616
- Travel
- $68,202
- Program services (functional)
- $1,591,163
- Management and general (functional)
- $249,279
- Fundraising (functional)
- $220,653
Balance sheet and other
- Total assets, start of year
- $5,640,640
- Total assets, end of year
- $6,023,549
- Total liabilities, end of year
- $478,161
- Net assets, end of year
- $5,545,388
- Publicly traded securities
- $5,493,390
- Net assets without donor restrictions
- $1,563,722
- Net assets with donor restrictions
- $3,981,666
- Gross receipts
- $2,764,668
- Employees
- 6
- Volunteers
- 200
- Year formed
- 2000
- State of legal domicile
- DE
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| EMILY MILLIGAN | EXECUTIVE DIRECTOR Officer | 35 | $235,989 | $23,146 |
| LINDSAY MARJORAM | DIRECTOR OF RESEARCH Highest-paid employee | 35 | $206,889 | $8,473 |
| YONG LIN HUANG | RESEARCH ASSOCIATE, RESEARCH ENGAGEMENT AND ASSETS Highest-paid employee | 35 | $109,767 | $4,507 |
| LAURA DUVELIUS | DIRECTOR OF FUNDRAISING Highest-paid employee | 35 | $103,592 | $3,856 |
| BRUCE DEVELLE | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| JONATHAN STOKES | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MEGAN BRANAGH | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MICHELLE FLOREZ | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| NINA RUSSELL | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| PETER VAN LOO | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MIRIAM GREENBERG | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| STEVE GRAESSLE | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| STACEY WOODWARD | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| KATHERINE MCCURDY | CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| JAMES BAFFA | VICE CHAIR Trustee or director, Officer | 2 | $0 | $0 |
2 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| MARK GREENE | TREASURER Trustee or director, Officer | 2 | $0 |
| BRANDI DAGUE | SECRETARY Trustee or director, Officer | 2 | $0 |
990 for the year ended December 31, 2024: 15 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| EMILY MILLIGAN | EXECUTIVE DIRECTOR Officer | 35 | $227,314 | $20,819 |
| LINDSAY MARJORAM | DIRECTOR OF RESEARCH Highest-paid employee | 35 | $174,980 | $7,216 |
| BRUCE DEVELLE | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| JONATHAN STOKES | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MEGAN BRANAGH | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MICHELLE FLOREZ | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| NINA RUSSELL | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| PETER VAN LOO | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MIRIAM GREENBERG | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| ANDREW BUDDEMEYER TERM 24 | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| FLORENCE MANNES TERM 24 | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| KATHERINE MCCURDY | CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| JAMES BAFFA | VICE CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| MARK GREENE | TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| BRANDI DAGUE | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
990 for the year ended December 31, 2023: 14 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| EMILY MILLIGAN | EXECUTIVE DIRECTOR Officer | 35 | $210,452 | $19,442 |
| ANDREW BUDDEMEYER | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| BRANDI DAGUE | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| BRUCE DEVELLE | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| FLORENCE MANNES | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| JONATHAN STOKES | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MEGAN BRANAGH | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MICHELLE FLOREZ | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| NINA RUSSELL | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| PETER VAN LOO | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| MIRIAM GREENBERG | BOARD MEMBER Trustee or director | 2 | $0 | $0 |
| KATHERINE MCCURDY | CHAIR Trustee or director, Officer | 2 | $0 | $0 |
| MARK GREENE | TREASURER Trustee or director, Officer | 2 | $0 | $0 |
| JAMES BAFFA | SECRETARY Trustee or director, Officer | 2 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 2005 PALMER AVENUE 1033, LARCHMONT, NY 10538-2437
- Principal officer (990 for 2025)
- EMILY MILLIGAN, 2005 PALMER AVENUE 1033, LARCHMONT, NY 10538
- Signed the 990
- EMILY MILLIGAN, EXECUTIVE DIRECTOR
- Phone
- (914) 303-6323
- Website
- WWW.BARTHSYNDROME.ORG
- Return prepared by
- DORFMAN ABRAMS MUSIC LLC
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.
Program accomplishments
- 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 POLICYExpenses $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 SERVICESExpenses $43,648 · revenue $5,559
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 22-3755704
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2001
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Philanthropy, voluntarism and grantmaking foundations (T30)
- Assets (IRS master file)
- $6,023,549
- Income (IRS master file)
- $2,764,668
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $2,155,852 | $2,061,095 | $6,023,549 | XML |
| 990 | December 2024 | $1,940,887 | $2,093,891 | $5,640,640 | XML |
| 990 | December 2023 | $1,334,806 | $1,421,717 | $5,491,330 | XML |
| 990 | December 2022 | $1,387,712 | $1,367,327 | $5,372,000 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 22-3755704).
Questions about BARTH SYNDROME FOUNDATION INC
- What is the EIN of BARTH SYNDROME FOUNDATION INC?
- The employer identification number (EIN) of BARTH SYNDROME FOUNDATION INC is 22-3755704.
- Is BARTH SYNDROME FOUNDATION INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2001.
- Are donations to BARTH SYNDROME FOUNDATION INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does BARTH SYNDROME FOUNDATION INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of BARTH SYNDROME FOUNDATION INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did BARTH SYNDROME FOUNDATION INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of BARTH SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2025 names EMILY MILLIGAN.
- Who are the officers and directors of BARTH SYNDROME FOUNDATION INC?
- The 990 for the year ended December 31, 2025 lists 17 people; 4 received compensation from the organization, the highest $235,989 (EMILY MILLIGAN, EXECUTIVE DIRECTOR).
- How much revenue does BARTH SYNDROME FOUNDATION INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $2,155,852, expenses of $2,061,095 and total assets of $6,023,549 at year end.
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