Connecticut · Nonprofit
RETT SYNDROME RESEARCH TRUST INC
RETT SYNDROME RESEARCH TRUST INC (Connecticut) receives grants from 235 organizations whose IRS filings report $13,682,152 to it, the largest being TULL FAMILY FOUNDATION ($3,340,000). 133 of them have funded it in more than one year.
- Revenue FY2025
- $8.7M
- Funders on record
- 235
- Grants received
- $14M
- Net assets
- $7.2M
What Rett Syndrome Research Trust Inc does
Mission
The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.
As stated on its FY2025 Form 990.
Programs
The organization provides funding to leading research institutions and companies working on rett syndrome and related mecp2 disorders.
$7,097,393 spentof which $5,375,683 as grants$740,147 earned by the program96% of program spendingThe organization sponsors scientific workshops that bring the leading rett researchers together with elite scientists in synergistic fields to exchange data and set research direction.
$269,912 spent4% of program spendingThe organization provides funding to leading research institutions working on rett syndrome and related mecp2 disorders. Research is aimed at 1) restoring levels of mecp2 protein, 2) identifying objective tools to measure rett symptoms 3) establish a clinical trial network 4) identify function of mecp2 protein.
The organization sponsors scientific workshops that bring the leading rett researchers together with elite scientists in synergistic fields to exchange data and set research direction.
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $7,367,305.
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 2022 to 2023, from $15M to $18M (+24%).
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: 2020 1% · 2021 2% · 2023 2%. Grants only. Government contracts and fees sit inside program revenue.
91% of RETT SYNDROME RESEARCH TRUST INC’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.
Chief executive
Monica Coenraads
Chief executive officer
Board chair
Anthony P Schoener
Chairman
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 51 funders to 88 funders, grant income rose $1.2M → $2.2M.
31 of 235 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 43% 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 RETT SYNDROME RESEARCH TRUST INC’s funders (the co-funder graph). Top 30 of 235 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
RETT SYNDROME RESEARCH TRUST INC has a broad base — no single funder exceeds 24% of grant income, and it takes 5 funders to reach half.
the vertical line marks half of all grant income — 5 funders to its left
53% 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 RETT SYNDROME RESEARCH TRUST INC.
Largest funder’s share by year: 2017 30% · 2018 19% · 2019 22% · 2020 23% · 2021 48% · 2022 19% · 2023 34% — growing more concentrated.
“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
38% of RETT SYNDROME RESEARCH TRUST INC's funders are still giving 3 years after their first grant; 57% 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
RETT SYNDROME RESEARCH TRUST INC draws 97% of its grant income from funders outside Connecticut, across 31 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $5.9M 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
RETT SYNDROME RESEARCH TRUST INC holds deeper cash reserves than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like RETT SYNDROME RESEARCH TRUST 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 Connecticut
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
89% of spending goes to programs.
Governance
Public support
97%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 8 states
Screen this organization
A dated, signed PDF of the compliance screen for RETT SYNDROME RESEARCH TRUST 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 RETT SYNDROME RESEARCH TRUST INC?
- RETT SYNDROME RESEARCH TRUST INC (Connecticut) receives grants from 235 organizations whose IRS filings report $13,682,152 to it, the largest being TULL FAMILY FOUNDATION ($3,340,000). 133 of them have funded it in more than one year.
- How many funders does RETT SYNDROME RESEARCH TRUST INC have?
- IRS filings report 235 organizations giving $13,682,152 in grants to RETT SYNDROME RESEARCH TRUST INC, 133 of which have funded it in more than one year.
- Who is the largest funder of RETT SYNDROME RESEARCH TRUST INC?
- TULL FAMILY FOUNDATION is the largest funder on record, with $3,340,000 in grants. The full list of funders is on this page.
- How can an organization like RETT SYNDROME RESEARCH TRUST INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Connecticut. 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 235 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