New York · Nonprofit
THE MARFAN FOUNDATION INC
THE MARFAN FOUNDATION INC (New York) receives grants from 163 organizations whose IRS filings report $15,118,426 to it, the largest being NATIONAL PHILANTHROPIC TRUST ($3,106,602). 83 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $7.8M
- Funders on record
- 163
- Grants received
- $15M
- Net assets
- $17M
What The Marfan Foundation Inc does
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.
As stated on its FY2025 Form 990.
Programs
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…
$2,811,733 spentof which $1,512,774 as grants45% of program spendingSee 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…
$2,092,564 spentof which $12,297 as grants$32,885 earned by the program33% of program spendingSee 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…
$1,380,263 spentof which $4,647 as grants$1,505 earned by the program22% of program spending
The 3 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $6,284,560.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2021 to 2022, from $12M to $17M (+33%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 10% · 2022 5% · 2023 7%. Grants only. Government contracts and fees sit inside program revenue.
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Michael L Weamer
Pres/CEO
Board chair
Bert Medina
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 31 funders to 54 funders, grant income rose $1.5M → $2.2M.
27 of 163 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 67% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of THE MARFAN FOUNDATION INC’s funders (the co-funder graph). Top 30 of 163 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
THE MARFAN FOUNDATION INC has a broad base — no single funder exceeds 21% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
73% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund THE MARFAN FOUNDATION INC.
Largest funder’s share by year: 2017 67% · 2018 70% · 2019 62% · 2020 22% · 2021 28% · 2022 46% · 2023 45% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
25% of THE MARFAN FOUNDATION INC's funders are still giving 3 years after their first grant; 51% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
67% of THE MARFAN FOUNDATION INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $5.0M that is directly attributable, 59% of it comes from New York funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $10M arriving through sponsors registered in 19 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Organizations like THE MARFAN FOUNDATION INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In New York
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
83% of spending goes to programs.
Governance
Public support
77%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 28 states
Screen this organization
A dated, signed PDF of the compliance screen for THE MARFAN FOUNDATION INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds THE MARFAN FOUNDATION INC?
- THE MARFAN FOUNDATION INC (New York) receives grants from 163 organizations whose IRS filings report $15,118,426 to it, the largest being NATIONAL PHILANTHROPIC TRUST ($3,106,602). 83 of them have funded it in more than one year, and 67% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does THE MARFAN FOUNDATION INC have?
- IRS filings report 163 organizations giving $15,118,426 in grants to THE MARFAN FOUNDATION INC, 83 of which have funded it in more than one year.
- Who is the largest funder of THE MARFAN FOUNDATION INC?
- NATIONAL PHILANTHROPIC TRUST is the largest funder on record, with $3,106,602 in grants. The full list of funders is on this page.
- How can an organization like THE MARFAN FOUNDATION INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New York. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 163 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing