THE BARTH SYNDROME FOUNDATION

EIN: 223755704 501(c)(3) Philanthropy & Grantmaking

LARCHMONT, NY

Total Revenue
$1,940,887
Total Expenses
$2,093,891
Total Assets
$5,640,640
Net Assets
$5,220,286
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
2000
Legal Domicile
DE
Principal Officer
EMILY MILLIGAN
Phone
9143036323
Tax Period
2024-01-01 to 2024-12-31

THE BARTH SYNDROME FOUNDATION, founded in 2000, is a community nonprofit in the Philanthropy & Grantmaking sector that reported $1.9M in total revenue in fiscal year 2024. Revenue surged 45% from the prior year, signaling strong growth momentum. Net assets of $5.2M represent 32 months of operating reserves.

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 Service Accomplishments

Program 1
Expenses: $819,332

THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2024 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE...

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THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2024 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.

Program 2
Expenses: $332,352

THIS 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...

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THIS 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.

Program 3
Expenses: $273,870

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...

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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

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $1,674,742
Program Service Revenue $0
Investment Income $256,783
Other Revenue $9,362
TOTAL REVENUE $1,940,887

Expense Breakdown

Grants Paid $432,746
Salaries & Benefits $840,854
Fundraising Expenses $178,686
Program Expenses $1,731,297
Other Expenses $820,291
TOTAL EXPENSES $2,093,891

Year-over-Year Comparison

2024 2023 Change
Revenue $1,940,887 $1,334,806 +0.5%
Expenses $2,093,891 $1,421,717 +0.5%
Net Income $-153,004 $-86,911 +0.8%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
11
Independent Members
11
Employees
6
Volunteers
200

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$248,133
Total Directors
13
$0
Key Employees
0
$0
Highest Compensated
1
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
BRUCE DEVELLE BOARD MEMBER 2.00
Director
$0 $0 $0
JONATHAN STOKES BOARD MEMBER 2.00
Director
$0 $0 $0
MEGAN BRANAGH BOARD MEMBER 2.00
Director
$0 $0 $0
MICHELLE FLOREZ BOARD MEMBER 2.00
Director
$0 $0 $0
NINA RUSSELL BOARD MEMBER 2.00
Director
$0 $0 $0
PETER VAN LOO BOARD MEMBER 2.00
Director
$0 $0 $0
MIRIAM GREENBERG BOARD MEMBER 2.00
Director
$0 $0 $0
ANDREW BUDDEMEYER TERM 24 BOARD MEMBER 2.00
Director
$0 $0 $0
FLORENCE MANNES TERM 24 BOARD MEMBER 2.00
Director
$0 $0 $0
KATHERINE MCCURDY CHAIR 2.00
Officer Director
$0 $0 $0
JAMES BAFFA VICE CHAIR 2.00
Officer Director
$0 $0 $0
MARK GREENE TREASURER 2.00
Officer Director
$0 $0 $0
BRANDI DAGUE SECRETARY 2.00
Officer Director
$0 $0 $0
EMILY MILLIGAN EXECUTIVE DIRECTOR 35.00
Officer
$227,314 $20,819 $248,133
LINDSAY MARJORAM DIRECTOR OF RESEARCH 35.00
Highest
$174,980 $7,216 $182,196
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 No data No data No data No data
2024 $1,940,887 $2,093,891 $5,640,640 $-153,004
2023 $1,334,806 $1,421,717 $5,491,330 $-86,911
2022 $1,387,712 $1,367,327 $5,372,000 $20,385
2021 $1,563,641 $1,010,732 $5,986,941 $552,909
2020 $1,267,165 $1,001,933 $5,553,199 $265,232
2019 $1,135,762 $1,301,376 $4,993,243 $-165,614
2018 $2,291,095 $1,155,310 $4,750,350 $1,135,785
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