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THE MARFAN FOUNDATION INC

EIN 52-1265361 PRT WASHINGTN, NY

Revenue 2024
$7,780,692
Expenses 2024
$7,566,004

Program services were 83.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
Classification
1200
Street
22 MANHASSET AVE

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

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.

  • 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.

    Expenses $2,811,733 · Grants $1,512,774

  • SEE SCHEDULE O.SUPPORT -EXPENSES $2,092,564, GRANTS $12,297, REVENUE $32,885THE MARFAN FOUNDATION OFFERS CUTTING-EDGE FACT-BASED INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS. WE REACH A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THROUGH OUR INSTITUTIONAL DIRECTORY, THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. - AND A GROWING NUMBER OF GLOBAL - INSTITUTIONS OFFERING EXPERTISE IN MARFAN, LDS, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. WE PROVIDE EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH OUR WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, AS WELL AS WEBINARS ON MEDICAL TOPICS, MENTAL HEALTH ISSUES, SUPPORT GROUPS, AND QUALITY OF LIFE. PROGRAMS ARE SCHEDULED AT VARIOUS TIMES TO INCREASE ACCESS ACROSS TIME ZONES (US AND ABROAD). AN INCREASING NUMBER OF RESOURCES AND EDUCATIONAL OPPORTUNITIES ARE OFFERED IN SPANISH LANGUAGE AND OTHER LANGUAGES TO BETTER SERVE PEOPLE LIVING WITH GENETIC AORTIC CONDITIONS AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON ENSURING EVERYONE HAS ACCESS TO QUALITY CARE AND FOSTERING BELONGING FOR ALL.

    Expenses $2,092,564 · Grants $12,297 · Revenue $32,885

  • SEE SCHEDULE O.EDUCATION - EXPENSES $1,380,263, GRANTS $4,647, REVENUE $1,505THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENETIC AORTIC NETWORK) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR PEOPLE LIVING WITH GENETIC AORTIC AND VASCULAR CONDITIONS, THEIR LOVED ONES, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES, AND MORE THAN 7 MILLION IN THE SOCIAL MEDIA SPACE ALONE. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION 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 MORE THAN 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.

    Expenses $1,380,263 · Grants $4,647 · Revenue $1,505

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • BERT MEDINA

    CHAIR

    Total calculated
    $0
    Hours/week
    8

  • CORY A EAVES

    IMMEDIATE PAST CHAIR

    Total calculated
    $0
    Hours/week
    1

  • CARYN E KAUFFMAN CPA

    TREASURER

    Total calculated
    $0
    Hours/week
    3

  • PATRICIA MCCABE ESTRADA

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • SCOTT D AVITABILE ESQ

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • GIL BASHE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JUAN BOWEN MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • ALAN BRAVERMAN MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DUKE CAMERON MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • RAY CHEVALLIER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • BRANDY BANKS HOTCHKISS

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • GARY KAUFFMAN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JERRY L LERMAN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JEFFREY C LESAGE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SINCLAIR LI

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • BRYAN MAHER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JESS MILBURN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JAMES PRUTOW

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JOAQUIN RAMOS JR

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DAWN REINER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • ANDREW TOY

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JON R TULLIS

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DAVID WARREN

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • ANTHONY YASICK MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • MICHAEL L WEAMER

    PRES/CEO

    Total calculated
    $502,741
    From this org
    $474,635
    From related orgs
    $0
    Other
    $28,106
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $474,635
    Bonus
    $0
    Other
    $0
    Deferred
    $10,000
    Nontaxable benefits
    $18,106
    Filer's total
    $502,741

The first 25 listed. Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $7,780,692
    Expenses
    $7,566,004
    Contributions
    $6,904,067
    Grants paid
    $1,529,718
  • 2023
    Revenue
    $5,486,020
    Expenses
    $6,646,776
    Contributions
    $4,878,044
    Grants paid
    $1,172,413
  • 2022
    Revenue
    $8,195,380
    Expenses
    $6,758,497
    Contributions
    $7,656,928
    Grants paid
    $1,115,927

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $9,814,628
    Expenses
    $4,705,271
    Assets (EOY)
    $16,600,923

  • 2020 · 990

    Revenue
    $4,898,166
    Expenses
    $4,891,164
    Assets (EOY)
    $12,467,539

  • 2019 · 990

    Revenue
    $3,889,456
    Expenses
    $6,171,617
    Assets (EOY)
    $11,146,771

  • 2018 · 990

    Revenue
    $4,704,278
    Expenses
    $5,465,717
    Assets (EOY)
    $12,076,553

  • 2017 · 990

    Revenue
    $4,353,700
    Expenses
    $5,374,588
    Assets (EOY)
    $12,637,785

  • 2016 · 990

    Revenue
    $8,321,203
    Expenses
    $4,465,668
    Assets (EOY)
    $13,466,909

  • 2015 · 990

    Revenue
    $3,519,660
    Expenses
    $4,644,297
    Assets (EOY)
    $9,314,476

  • 2014 · 990

    Revenue
    $3,548,689
    Expenses
    $4,438,348
    Assets (EOY)
    $10,608,212

  • 2013 · 990

    Revenue
    $3,048,384
    Expenses
    $4,036,732
    Assets (EOY)
    $11,524,820

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $3,841,998
    Assets (EOY)
    $12,493,339

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 26 October 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.