THE MARFAN FOUNDATION INC

EIN: 521265361 501(c)(3)

PORT WASHINGTON, NY

Total Revenue
$5,486,020
Total Expenses
$6,646,776
Total Assets
$18,118,070
Net Assets
$16,257,554
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Financial Trends

Organization Details

Formation Year
1981
Legal Domicile
MD
Principal Officer
MICHAEL L WEAMER
Phone
5168838712
Tax Period
2023-07-01 to 2024-06-30

THE MARFAN FOUNDATION INC, founded in 1981, is a community nonprofit that reported $5.5M in total revenue in fiscal year 2023. Revenue fell 33% from the prior year — a significant decline worth monitoring. Expenses of $6.6M exceeded revenue, resulting in a 21% operating deficit.

Mission

THE MARFAN FOUNDATION SAVES LIVES AND IMPROVES THE QUALITY OF LIFE OF INDIVIDUALS WITH GENETIC AORTIC AND VASCULAR CONDITIONS, INCLUDING MARFAN, LOEYS-DIETZ, AND VASCULAR EHLERS-DANLOS (VEDS) SYNDROMES WHILE CREATING COMMUNITY. 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.

Program Service Accomplishments

Program 1
Expenses: $2,248,000 Revenue: $0

RESEARCH -EXPENSES $2,248,000, GRANTS $1,090,810, REVENUE $0THE MARFAN FOUNDATION ADVANCES RESEARCH THAT SAVES LIVES AND DRAMATICALLY ENHANCES THE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN...

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RESEARCH -EXPENSES $2,248,000, GRANTS $1,090,810, 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 WITH MARFAN SYNDROME AND RELATED CONDITIONS. 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 GRANT 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.

Program 2
Expenses: $2,059,592 Revenue: $131,140

AWARD REFUNDS 35,083.

Program 3
Expenses: $1,140,112 Revenue: $10

EDUCATION - EXPENSES $1,140,112, GRANTS $5,280, REVENUE $10THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENTAC ALLIANCE) ARE THE PREEMINENT...

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EDUCATION - EXPENSES $1,140,112, GRANTS $5,280, REVENUE $10THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENTAC ALLIANCE) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR AFFECTED INDIVIDUALS AND FAMILIES WITH GENETIC AORTIC AND VASCULAR CONDITIONS, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND RELATED CONDITIONS IN MANY LANGUAGES THROUGH ITS HELP & RESOURCE CENTER, WHICH REACHES 5,000 PEOPLE EVERY YEAR -- DIRECTED BY IN-HOUSE NURSES AND A BILINGUAL MANAGER WHO ANSWER QUESTIONS BY PHONE AND EMAIL, AND THROUGH ITS COMPREHENSIVE WEBSITE, WHICH IS AVAILABLE IN 25 LANGUAGES. THE FOUNDATION OFFERS SPECIALIZED RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, AND SCHOOL NURSES. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH, OFFERING A RANGE OF OPPORTUNITIES, INCLUDING VIRTUAL SUPPORT GROUPS, VIDEOS, WEBINARS, AND OTHER CONTENT. THE MARFAN FOUNDATION FOCUSES ON EXPANDING HEALTH EQUITY AND ACCESS TO CARE FOR THE CONSTITUENTS WE SERVE GLOBALLY.

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

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $4,878,044
Program Service Revenue $131,150
Investment Income $476,826
Other Revenue $0
TOTAL REVENUE $5,486,020

Expense Breakdown

Grants Paid $1,172,413
Salaries & Benefits $3,721,663
Fundraising Expenses $732,597
Program Expenses $5,447,704
Other Expenses $1,752,700
TOTAL EXPENSES $6,646,776

Year-over-Year Comparison

2023 2022 Change
Revenue $5,486,020 $8,195,380 -0.3%
Expenses $6,646,776 $6,758,497 0.0%
Net Income $-1,160,756 $1,436,883 -1.8%
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
21
Independent Members
21
Employees
28
Volunteers
500

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
7
$802,498
Total Directors
21
$0
Key Employees
0
$0
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
BERT MEDINA CHAIR 8.00
Officer Director
$0 $0 $0
CORY A EAVES IMMEDIATE PAST CHAIR 1.00
Officer Director
$0 $0 $0
CARYN E KAUFFMAN CPA TREASURER 3.00
Officer Director
$0 $0 $0
PATRICIA MCCABE ESTRADA SECRETARY 1.00
Officer Director
$0 $0 $0
JERRY L LERMAN DIRECTOR 1.00
Director
$0 $0 $0
ALAN BRAVERMAN MD DIRECTOR 1.00
Director
$0 $0 $0
BRANDY BANKS HOTCHKISS DIRECTOR 1.00
Director
$0 $0 $0
GIL BASHE DIRECTOR 1.00
Director
$0 $0 $0
JOAQUIN RAMOS JR DIRECTOR 1.00
Director
$0 $0 $0
JEFFREY C LESAGE DIRECTOR 1.00
Director
$0 $0 $0
SINCLAIR LI DIRECTOR 1.00
Director
$0 $0 $0
DAVID WARREN DIRECTOR 1.00
Director
$0 $0 $0
ANDREW TOY DIRECTOR 1.00
Director
$0 $0 $0
GARY KAUFFMAN DIRECTOR 1.00
Director
$0 $0 $0
JON TULLIS DIRECTOR 1.00
Director
$0 $0 $0
SCOTT D AVITABILE ESQ DIRECTOR 1.00
Director
$0 $0 $0
ANTHONY YASICK MD DIRECTOR 1.00
Director
$0 $0 $0
JUAN BOWEN MD DIRECTOR 1.00
Director
$0 $0 $0
RAY CHEVALLIER DIRECTOR 1.00
Director
$0 $0 $0
JAMES PRUTOW DIRECTOR 1.00
Director
$0 $0 $0
DAWN REINER DIRECTOR 1.00
Director
$0 $0 $0
MICHAEL L WEAMER PRES/CEO 35.00
Officer
$457,343 $27,314 $484,657
INDERJEET KAUR CPA CHIEF FINANCIAL OFFICER 35.00
Officer
$154,779 $17,371 $172,150
JUDITH GIBALDI CHIEF OPERATIONS OFFICER 35.00
Officer
$118,377 $27,314 $145,691
HELAINE BARUCH CHIEF DEVELOPMENT OFFICER 35.00
Highest
$243,822 $17,371 $261,193
JOSEPHINE GRIMA CHIEF SCIENCE OFFICER 35.00
Highest
$207,595 $17,371 $224,966
EILEEN NOVINS CHIEF GLOBAL BUSINESS DEVEL. OFFICER 35.00
Highest
$189,021 $17,371 $206,392
LAUREN E MAY DIRECTOR OF RESEARCH 35.00
Highest
$131,937 $17,371 $149,308
KIMBERLY K HUDDLESTON VP. OF DEVELOPMENT 35.00
Highest
$117,954 $17,371 $135,325
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 $5,486,020 $6,646,776 $18,118,070 $-1,160,756
2023 $8,195,380 $6,758,497 $18,561,612 $1,436,883
2022 $9,814,628 $4,705,271 $16,600,923 $5,109,357
2021 $4,898,166 $4,891,164 $12,467,539 $7,002
2020 $3,889,456 $6,171,617 $11,146,771 $-2,282,161
2019 $4,704,278 $5,465,717 $12,076,553 $-761,439
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