New York · Nonprofit
THE BARTH SYNDROME FOUNDATION
THE BARTH SYNDROME FOUNDATION (New York) receives grants from 52 organizations whose IRS filings report $2,290,760 to it, the largest being Silicon Valley Community Foundation ($800,000). 29 of them have funded it in more than one year, and 76% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $1.9M
- Funders on record
- 52
- Grants received
- $2.3M
- Net assets
- $5.2M
What The Barth Syndrome Foundation does
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.
As stated on its FY2024 Form 990.
Programs
The barth syndrome science, medicine & research program in 2025 was comprised of a) the bsf research program to foster scientific and clinical investigations into barth syndrome to facilitate the development of a specific treatment or a cure for this disease, and b)the barth syndrome medical database and bio-repository for the collection and storage of medical information/samples on individuals with barth syndrome over time to gain a better understanding of the disease.
$966,691 spentof which $512,458 as grants61% of program spendingCommunication and awareness represents awareness programs designed to ensure families, physicians, and researchers are aware of barth syndrome.
$194,237 spent12% of program spendingBsf builds awareness of barth syndrome to improve diagnosis and care, while advancing advocacy efforts that amplify patient voices, mobilize our patient community, and support progress in research and treatment access and drug development policy
$386,587 spent24% of program spendingBsf 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
$43,648 spent$5,559 earned by the program3% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $1,591,163.
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. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2017 to 2018, from $4.0M to $4.8M (+20%).
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: 2018 1% · 2020 7%. Grants only. Government contracts and fees sit inside program revenue.
86% of THE BARTH SYNDROME FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 8 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
Emily Milligan
Executive director
Board chair
Katherine Mccurdy
Chair
As listed on its FY2025 Form 990.
The chief executive listed changed between the FY2017 and FY2018 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 12 funders to 27 funders, grant income rose $138k → $192k.
13 of 52 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 76% 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 BARTH SYNDROME FOUNDATION’s funders (the co-funder graph). Top 30 of 52 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 BARTH SYNDROME FOUNDATION leans on a few funders — its largest provides 35% of grant income and the top three 70%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
77% 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 BARTH SYNDROME FOUNDATION.
Largest funder’s share by year: 2017 55% · 2018 32% · 2019 67% · 2020 55% · 2021 58% · 2022 41% · 2023 27% — 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
48% of THE BARTH SYNDROME FOUNDATION's funders are still giving 3 years after their first grant; 56% 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
76% of THE BARTH SYNDROME FOUNDATION'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 $554k that is directly attributable, 84% of it comes from funders outside New York, across 14 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.7M arriving through sponsors registered in 11 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.
Against its field
THE BARTH SYNDROME FOUNDATION has grown faster than half of the 2,910 philanthropy nonprofits its size.
this organization peer median middle 50% of peers· 2,910 philanthropy nonprofits $1M–$10M, FY2024
Government funding THE BARTH SYNDROME FOUNDATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $151k on record.
- Department of Health and Human Services$151k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like THE BARTH SYNDROME FOUNDATION
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
73%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 15 states
Screen this organization
A dated, signed PDF of the compliance screen for THE BARTH SYNDROME FOUNDATION: 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 BARTH SYNDROME FOUNDATION?
- THE BARTH SYNDROME FOUNDATION (New York) receives grants from 52 organizations whose IRS filings report $2,290,760 to it, the largest being Silicon Valley Community Foundation ($800,000). 29 of them have funded it in more than one year, and 76% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does THE BARTH SYNDROME FOUNDATION have?
- IRS filings report 52 organizations giving $2,290,760 in grants to THE BARTH SYNDROME FOUNDATION, 29 of which have funded it in more than one year.
- Who is the largest funder of THE BARTH SYNDROME FOUNDATION?
- Silicon Valley Community Foundation is the largest funder on record, with $800,000 in grants. The full list of funders is on this page.
- How can an organization like THE BARTH SYNDROME FOUNDATION 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 FY2024 (financials across 2017–2024), and the filings of 52 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 14, 2026. What this page cannot tell you · view filing