The Barth Syndrome Foundation

Nonprofit profile at a glance

EIN
223755704
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Larchmont, NY, USA
Phone
9143036323
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Public Foundations

Official website

Reported finances

Revenue
$2,155,852
Expenses
$2,061,095
Assets
$6,023,549
Liabilities
$478,161

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • EMILY MILLIGAN (EXECUTIVE DIRECTOR)

Highest reported compensation

  • EMILY MILLIGAN (EXECUTIVE DIRECTOR): $259,135 total reported compensation
  • LINDSAY MARJORAM (DIRECTOR OF RESEARCH): $215,362 total reported compensation
  • YONG LIN HUANG (RESEARCH ASSOCIATE, RESEARCH ENGAGEMENT AND ASSETS): $114,274 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 68% for direct work, and 32% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 72
  • Transparency & Controls: 77
  • Accountability: 100
  • Sustainability: 46
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 78.2%; rating input score 78
  • Program expense ratio: 77.2%; rating input score 77
  • Fundraising efficiency: $8.65 raised per $1 spent on fundraising; rating input score 31; 31st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 5 of 6 controls in place; rating input score 83
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 0 of 8 controls in place; rating input score 0
    • Claims monitoring procedures: Fail
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 8 of 8 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 4.4%; rating input score 41; 41st percentile among comparable filings
  • Total-asset coverage ratio: 2.92; rating input score 69; 69th percentile among comparable filings
  • Liabilities to assets ratio: 0.08; rating input score 52; 52nd percentile among comparable filings
  • Officer compensation ratio: 33.8%; rating input score 5; 5th percentile among comparable filings

Growth

  • Program expense growth: 4.6% per year; rating input score 100; 34th percentile among comparable filings
  • Revenue growth: 4.3% per year; rating input score 100; 32nd percentile among comparable filings
  • Asset growth: 7.9% per year; rating input score 100; 49th percentile among comparable filings

Details

  • Where the money goes: 78.2% of revenue deployed · 77.2% of spending went to programs
  • Governance: 13 of 13 board members independent · 8 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $1.6M in reported program spending
  • Leadership: top reported pay $259K · 17 people listed · 5 of 6 pay-setting controls reported
  • Consistency: 33 of 33 current checks pass
  • Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 8 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 31/100.
  • Moderate — Sustainability: Operating margin scored 41/100.
  • High — Sustainability: Officer compensation ratio scored 5/100.
  • Review — Sustainability: Liabilities to assets ratio scored 52/100.