The Marfan Foundation Inc

Nonprofit profile at a glance

EIN
521265361
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Port Washington, NY, USA
Phone
5168838712
Rating
82
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$7,780,692
Expenses
$7,566,004
Assets
$19,547,558
Liabilities
$2,672,468

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

32 people listed

Executive titles in this filing

  • MICHAEL L WEAMER (PRES/CEO)

Highest reported compensation

  • MICHAEL L WEAMER (PRES/CEO): $502,741 total reported compensation
  • HELAINE BARUCH (CHIEF DEVELOPMENT OFFICER): $268,308 total reported compensation
  • JOSEPHINE GRIMA (CHIEF SCIENCE OFFICER): $228,488 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

See schedule o.the marfan foundation drives research, education and support and builds community to improve outcomes, save lives and empower all people to thrive who are living with marfan, loeys-dietz, vascular ehlers-danlos syndromes, and related genetic aortic and vascular conditions. *we pursue the most innovative research and make sure that it receives proper funding. *we foster an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment. *we provide dedicated support to families, caregivers, and healthcare providers.

What it reported doing in 2024

See schedule o.research -expenses $2,811,733, grants $1,512,774, revenue $0the marfan foundation advances research that saves lives and dramatically enhances the quality of life for people living with marfan syndrome, loeys-dietz syndrome, veds, and related genetic aortic and vascular conditions. Our research program has advanced science since 1981, funding 176 research grants since 1986. The research we've supported has helped reduce life-threatening problems, identified treatments that have improved quality of life, and helped people live longer lives. The marfan foundation collaborates with the research community and organizations to identify new therapies and treatments domestically and around the globe. The foundation's two-year and four-year grants mechanisms help ensure a pipeline of dedicated fellows, new investigators, and faculty members who are committed to the scientific discovery necessary to advance understanding of rare diseases. The foundation convenes national and international research conferences, facilitates collaborations among researchers and research institutions, and holds symposiums in the us and abroad to facilitate the sharing of research findings that expedite progress. The marfan foundation partners with government agencies and other healthcare organizations to advance its research goals and advocate for additional research funding from the government.

Operating model

Revenue model
Donor-supported. 93% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 76% for direct work, and 24% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - 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: 78
  • Transparency & Controls: 77
  • Accountability: 100
  • Sustainability: 48
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 85.3%; rating input score 85
  • Program expense ratio: 83.1%; rating input score 83
  • Fundraising efficiency: $8.36 raised per $1 spent on fundraising; rating input score 32; 32nd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.4%; rating input score 94; 24th percentile among comparable filings
  • Pay-setting controls: 4 of 6 controls in place; rating input score 67
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Missing
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 3 of 8 controls in place; rating input score 38
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Pass
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 99.7%; rating input score 100; 40th 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: 9 of 9 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: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 2.8%; rating input score 44; 44th percentile among comparable filings
  • Total-asset coverage ratio: 2.58; rating input score 70; 70th percentile among comparable filings
  • Liabilities to assets ratio: 0.14; rating input score 52; 52nd percentile among comparable filings
  • Officer compensation ratio: 24.1%; rating input score 9; 9th percentile among comparable filings

Growth

  • Program expense growth: 6% per year; rating input score 100; 45th percentile among comparable filings
  • Revenue growth: 4% per year; rating input score 100; 34th percentile among comparable filings
  • Asset growth: 4.1% per year; rating input score 100; 29th percentile among comparable filings

Details

  • Where the money goes: 85.3% of revenue deployed · 83.1% of spending went to programs
  • Governance: 24 of 24 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $6.3M in reported program spending
  • Leadership: top reported pay $503K · 32 people listed · 4 of 6 pay-setting controls reported
  • Highest-paid contractors: 1 contractor listed · $125K reported
  • Consistency: 38 of 40 current checks pass · 2 findings to review
  • Schedules: 10 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 14 filed money-flow records
  • Related organizations: 6 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.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

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

  • Moderate — Transparency & Controls: Foreign activity oversight: 5 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 32/100.
  • Moderate — Sustainability: Operating margin scored 44/100.
  • High — Sustainability: Officer compensation ratio scored 9/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Sustainability: Liabilities to assets ratio scored 52/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.