Ohio · Nonprofit
INTERNATIONAL RETT SYNDROME FOUNDATION
INTERNATIONAL RETT SYNDROME FOUNDATION (Ohio) receives grants from 147 organizations whose IRS filings report $5,582,098 to it, the largest being CASTING 4 A CURE INC ($614,301). 66 of them have funded it in more than one year.
- Revenue FY2025
- $4.3M
- Funders on record
- 147
- Grants received
- $5.6M
- Net assets
- $4.4M
What International Rett Syndrome Foundation does
Mission
To accelerate full spectrum research to cure rett syndrome and empower families with information, knowledge, and connectivity.
As stated on its FY2025 Form 990.
Programs
Irsf advances the full spectrum of rett syndrome research - from basic science to clinical development - with the singular goal of delivering effective treatments and, ultimately, a cure. We fund translational research grants worldwide to develop the next generation of rett research, convene leading researchers through our annual science symposia to accelerate discovery and collaboration, and invest directly in the therapeutic pipeline to accelerate treatments that will fundamentally change the lives of those living with rett syndrome. Through our clinical research network and centers of excellence, we drive the development of evidence-based care guidelines, convene key opinion leaders, contribute to a longitudinal data registry, and build upon the rett natural history study, generating the real-world evidence that informs both care standards and regulatory pathways for new therapies. Through our north american clinic network, we promote consistent, high-quality care by making evidence-based clinical guidelines accessible to families and the providers who serve them.
$3,549,456 spentof which $1,611,176 as grants$323,344 earned by the program85% of program spendingIrsf stands alongside families at every stage of the rett syndrome journey - from diagnosis through adulthood. We build and support the community in numerous ways. Our family empowerment team delivers expert-led educational programming through webinars and regional in-person education days and resource development, ensuring families have access to the latest clinical and research insights regardless of where they live. Our community engagement team connects families with irsf and with each other to ensure they have around the clock guidance, connection, and support. We develop and distribute educational resources tailored for families, caregivers, educators, and therapists. We engage federal policymakers to keep rett syndrome a national research funding priority and work directly with industry partners to amplify the patient voice in drug development to ensure clinical trial design reflects the realities of living with rett.
$619,501 spent15% of program spending
The 2 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $4,168,957.
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 2020 to 2021, from $6.3M to $7.4M (+18%).
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: 2017 12% · 2018 11% · 2019 11% · 2020 17% · 2021 15%. Grants only. Government contracts and fees sit inside program revenue.
90% of INTERNATIONAL RETT SYNDROME FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
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.
Board chair
David Pass Pharmd
Chairman
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 22 funders to 53 funders, grant income rose $303k → $820k.
25 of 147 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 48% 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 INTERNATIONAL RETT SYNDROME FOUNDATION’s funders (the co-funder graph). Top 30 of 147 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
INTERNATIONAL RETT SYNDROME FOUNDATION has a broad base — no single funder exceeds 11% of grant income, and it takes 6 funders to reach half.
the vertical line marks half of all grant income — 6 funders to its left
72% 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 INTERNATIONAL RETT SYNDROME FOUNDATION.
Largest funder’s share by year: 2017 26% · 2018 49% · 2019 22% · 2020 17% · 2021 10% · 2022 22% · 2023 13% — 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
32% of INTERNATIONAL RETT SYNDROME FOUNDATION's funders are still giving 3 years after their first grant; 45% 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
INTERNATIONAL RETT SYNDROME FOUNDATION draws 95% of its grant income from funders outside Ohio, across 30 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $2.7M arriving through sponsors registered in 16 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
INTERNATIONAL RETT SYNDROME FOUNDATION's funding base is broadening — from 22 funders to 53 as grant income climbed.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding INTERNATIONAL RETT SYNDROME FOUNDATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $250 on record.
- FEDERAL$250
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 INTERNATIONAL RETT 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 Ohio
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
80% of spending goes to programs.
Governance
Public support
93%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 50 states
Screen this organization
A dated, signed PDF of the compliance screen for INTERNATIONAL RETT 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 INTERNATIONAL RETT SYNDROME FOUNDATION?
- INTERNATIONAL RETT SYNDROME FOUNDATION (Ohio) receives grants from 147 organizations whose IRS filings report $5,582,098 to it, the largest being CASTING 4 A CURE INC ($614,301). 66 of them have funded it in more than one year.
- How many funders does INTERNATIONAL RETT SYNDROME FOUNDATION have?
- IRS filings report 147 organizations giving $5,582,098 in grants to INTERNATIONAL RETT SYNDROME FOUNDATION, 66 of which have funded it in more than one year.
- Who is the largest funder of INTERNATIONAL RETT SYNDROME FOUNDATION?
- CASTING 4 A CURE INC is the largest funder on record, with $614,301 in grants. The full list of funders is on this page.
- How can an organization like INTERNATIONAL RETT SYNDROME FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Ohio. 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 147 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