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Rett Syndrome Research Trust Inc at a glanceAlso receives grants: funding profile →

· Public charity

Rett Syndrome Research Trust Inc

The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.

$5.4M
Granted FY2025still arriving
17
Grants FY2025still arriving
1
States reached
$1.1M
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
01What it funds
01100% classified

What it funded, over time

Every grant placed by its stated purpose and the recipient’s mission, by year, FY2017 to 2025.

Health$42MEducation$7.4MScience & Tech$1.0MFood & Nutrition$186kCommunity Improvement$59k
02FY2025 · 17 grants

Where the money goes

Grants by size, and the largest recipients.

By grant size · FY2025

  • Under $10k1 grant · $9k
  • $10k–50k2 grants · $55k
  • $50k–250k7 grants · $953k
  • $250k+7 grants · $4.4M
$213,610
Median grant
1
States reached
$21M
Total assets
Largest grants
RecipientAmount
Individual grant recipient$1,100,000
PROFLUENT$1,000,000
VIRALGEN$750,000
UNIVERSITY OF CALIFORNIA DAVIS$474,894
Individual grant recipient$419,317
4BASEBIO$350,000
Individual grant recipient$300,000
EVOX$240,000
DUKE$213,610
RESPLICE$130,000
Individual grant recipient$123,762
RETT SYNDROME GLOBAL REGISTRY$110,490
UNIVERSITY OF MASSACHUSETTS$84,791
Individual grant recipient$50,000
CHILDREN'S HOSPITAL OF MONTEFIORE$40,123
02The need
03

Does the money reach high-need areas?

Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.

show:

Dollar for dollar, its grants (FY17–25) land where the poverty rate runs at 11%, against an area that typically sits at 11%. 29% of its dollars go to grantees based in above-average-need neighborhoods. Its grants skew toward lower-need ZIPs.

area typical 11%WHITEHEAD INSTITUTE OF BIOMEDICAL RESEARCH: $260k → 8%UNIVERSITY OF MASSASHUSSETS: $891k → 12%HARVARD UNIVERSITY: $808k → 16%UNIVERSITY OF CALIFORNIA AT SAN DIEGO: $545k → 11%CALIFORNIA INSTITUTE OF TECHNOLOGIES: $500k → 14%UNIVERSITY OF CALIFORNIA DAVIS: $391k → 16%BAYLOR COLLEGE OF MEDICINE: $308k → 16%OREGON HEALTH AND SCIENCES UNIVERSITY FOUNDATION: $495k → 12%MIT: $1.2M → 9%UNIVERSITY OF NORTH CAROLINA: $246k → 13%EMORY UNIVERSITY: $1.3M → 14%CASE WESTERN RESERVE UNIVERSITY: $280k → 17%FRED HUTCHINSON CANCER RESEARCH CENTER: $285k → 9%HARVARD UNIVERSITY: $514k → 16%UNIVERSITY OF CALIFORNIA AT SAN DIEGO: $334k → 11%UNIVERSITY OF CALIFORNIA DAVIS: $361k → 16%OREGON HSU: $396k → 12%PROQR: $1.1M → 9%EMORY UNIVERSITY: $284k → 14%CASE WESTERN: $250k → 17%FRED HUTCHINSON CANCER RESEARCH INSTITUTE: $277k → 9%HARVARD UNIVERSITY: $256k → 16%PRE-CLINICAL STUDIES: $1.1M → 9%PROFLUENT: $1.0M → 9%UNIVERSITY OF MASSACHUSETTS: $781k → 9%GENE THERAPY CONSORTIUM: $766k → 9%VIRALGEN: $750k → 9%MASSACHUSETTS INSTITUTE OF TECHNOLOGY: $3.7M → 8%UNIVERSITY OF CALIFORNIA DAVIS: $475k → 9%MASSACHUSETTS INSTITUTE OF TECHNOLOGY: $777k → 8%MECP2 CONSORTIUM: $450k → 9%BEAM THERAPEUTICS: $639k → 8%EMORY UNIVERSITY: $425k → 9%MASSACHUSETTS INSTITUTE OF TECHNOLOGY: $612k → 8%JACKSON LABS: $419k → 9%Q-STATE BIOSCIENCES INC: $554k → 8%CLINICAL TRIAL CONSORTIUM: $419k → 9%BEAM THERAPEUTICS: $426k → 8%RETT SYNDROME GLOBAL REGISTRY CO RSRT: $383k → 9%MASSACHUSETTS INSTITUTE OF TECHNOLOGY: $356k → 8%UNIVERSITY OF PENNSYLVANIA: $381k → 9%MASSACHUSETTS INSTITUTE OF TECHNOLOGY: $306k → 8%4BASEBIO: $350k → 9%Q STATE: $248k → 8%SHAPE THERAPEUTICS: $300k → 9%OMBD CONSORTIUM: $278k → 9%CALIFORNIA INSTITUTE OF TECHNOLOGIES: $250k → 9%UNIVERSITY OF CALIFORNIA DAVIS: $243k → 9%0%20%40%50%more need →
grant to an above-average-need area below average· circle size = grant amount
How this is measured
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty line in the grantee’s ZIP, averaged from the tracts in that ZIP.

Which US states its grants reach

ME
WA
NY
MA
OR
OH
PA
NJ
CT
CA
NC
GA
TX

Grants abroad, by region: $695k on the FY2025 return

Schedule F, as filed: 1 region. The IRS asks for region and purpose, not the recipient, so no country or grantee can be named here.

United Kingdom$695k · 100% · 3 grants
How this is measured
US grants placed by each grantee’s ZIP, which can differ from where services are delivered. Need from public data (U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA), shown as context about the area, never attributed to the funder’s giving. Grants abroad on Schedule F are filed by region, purpose and amount with no recipient name, so they are shown by region and cannot be placed on the country map or matched to a grantee.
03Its grantees
repeat funding

Who it funds again

Organizations funded in more than one year, against those funded once.

72%of every dollar goes to organizations it has funded before.
$31M · 38 repeat orgs$12M to everyone else

Grantees it renews have grown median revenue +65% since the first grant, against +41% for those funded once.

38 repeat relationships: 8 still active in FY2025, 30 since wound down; 9 grantees were first funded in FY2025 (too recent to call).

How the two cohorts compare

Re-uppedFunded once

Organizations

38
34

Total granted

$31M
$7.8M

Median revenue growth · since first grant

+65%
+41%

Still filing today

29%
9%

New vs renewed · share of each year

In FY2025, 24% of grant dollars renewed an existing relationship; $4.1M went to new ones.

50%100%’17’18’19’20’21’22’23’24’25
RenewedFirst-time

Where new relationships form · theme of each grantee’s first grant

’17’18’19’20’21’22’23’24’25
HealthEducationScience & TechOther
How this is measured
First-time means a grantee’s first year in the filing window; renewed means funded in an earlier year too. The renewed share climbs naturally as a portfolio matures, so the signal is a year that bucks it (a wave of new grantees). The earliest year is left-censored: relationships that predate the data read as new. Theme is the grantee’s IRS cause.

Backed again, and grew

  • UNIVERSITY OF MASSACHUSETTS AMHERST FOUNDATION INC
    5× · 2019–2023 · $5.3M · revenue +653% · 31% of their budget
  • BC
    Baylor College of Medicine
    5× · 2017–2022 · $1.1M · revenue +67%
  • FH
    FRED HUTCHINSON CANCER RESEARCH CENTER
    4× · 2017–2022 · $803k · revenue +27%

Funded once

  • O
    OMBD
    one grant, 2017 · $1.4M
  • M
    MIT
    one grant, 2024 · $1.2M
  • P
    PROQR
    one grant, 2023 · $1.1M
How this is measured

Repeat means funded in two or more distinct years. Growth and survival are read from each grantee’s own subsequent IRS filings.

04Its field

Closest unfunded matches

The nonprofits that most resemble its grantees but are not funded by it, scored along the direction from the rest of the field toward the portfolio. A resemblance in what they say they do, not a recommendation.

1
New York University

Nyu is a private university with approximately 60,000 matriculating students in 20 schools and institutes. nyu's primary missions are education, research and scholarship, and patient care.

Education
2
Albany College of Pharmacy and Health Sciences

We educate the next generation of leaders to improve the health of our society.

Education
3
Rhode Island Hospital

As a founding hospital in the brown university health system, rih is committed to its mission: delivering health with care.

Health
4
William Marsh Rice University

As a leading research university with a distinctive commitment to undergraduate education, Rice University aspires to path breaking research, unsurpassed teaching, and contributions to the betterment of our world. It seeks to fulfill this…

Education
5
Cornell University

Education, research, medical services and other public services.

Education
6
Fred Hutchinson Cancer Center

Fred hutch cancer center ("fred hutch") unites innovative research and compassionate care to prevent and eliminate cancer and infectious disease. continued on schedule o

Health
7
University of Southern California

The central mission of the university of southern california is the development of human beings and society as a whole through the cultivation and enrichment of the human mind and spirit. the principal means by which our mission is…

Education
8
Massachusetts Eye & Ear Infirmary

THE MASSACHUSETTS EYE AND EAR INFIRMARY ("THE INFIRMARY") IS A NOT-FOR-PROFIT TEACHING HOSPITAL CONDUCTING PATIENT CARE AND RESEARCH. THE INFIRMARY IS A TEACHING HOSPITAL OF HARVARD MEDICAL SCHOOL AND AN INTERNATIONAL CENTER FOR RESEARCH.…

Health
9
University of Miami

See Form 990, Part I, Line 1, Description of Organization Mission.

Education
10
University of Minnesota Physicians

University of minnesota physicians serves as the integrated group practice for the university of minnesota medical school full-time faculty to provide the highest quality healthcare to patients and their families.university of minnesota…

Health
11
Rush University Medical Center

The mission of Rush is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships.

Health
12
Trustees of Tufts College

Education and Research

Education
How this is measured
The grantee most central to the portfolio’s shape is Massachusetts Institute of Technology; the most unlike its peers is Oregon Health & Science University Foundation. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
04the grantee network

19 grantees tracked through their own filings, 2017–2025.

Each grant beside the grantee’s revenue from every source, year by year.

How this is measured

Counted here: distinct organizations funded across 2017 to 2025, not grant rows in a single year, so this will not match the grant count on the cover. 19 of the 85 grantees resolved in that span have returns of their own we could reconcile.

Each grantee is resolved to its own IRS returns. Association, dated; never a causal claim.

1
Load-bearing (≥25% of a budget)
2
Early backer (in before they grew)
18/19
Grantees still filing
19/19
Grew since first funded

Where the money sits, by cause and then by grantee

Individual grant recipient: $4,046,521 · OtherIndividual grant recipientIndividual grant recipient: $2,225,975 · OtherIndividual grant recipientREGENTS OF THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO: $2,090,104 · OtherREGENTS OF THE UNIVERSITY OF CALIFORNIA AT SAN DIEGOIndividual grant recipient: $1,718,738 · OtherEMORY UNIVERSITY: $1,538,030 · OtherMECP2 CONSORTIUM: $1,416,713 · OtherOMBD: $1,392,112 · OtherMIT: $1,244,914 · OtherPROQR: $1,120,000 · OtherIndividual grant recipient: $1,100,000 · Other+57 more: $14,596,003 · Other+57 moreMassachusetts Institute of Technology: $5,786,738 · EducationMassachusetts Institute of Technolog…UNIVERSITY OF MASSACHUSETTS AMHERST FOUNDATION INC: $5,289,935 · EducationUNIVERSITY OF MASSACHUSETTS AMHERST …President and Fellows of Harvard College: $1,670,178 · EducationPresident and Fellows of Harvard Col…Baylor College of Medicine: $1,059,981 · EducationBaylor College of MedicineOREGON HEALTH & SCIENCE UNIVERSITY FOUNDATION: $725,423 · EducationCASE WESTERN RESERVE UNIVERSITY: $614,124 · EducationCALIFORNIA INSTITUTE OF TECHNOLOGY: $601,197 · Education+3 more: $569,215 · EducationWHITEHEAD INSTITUTE FOR BIOMEDICAL RESEARCH: $734,850 · HealthMONTEFIORE MEDICAL CENTER: $303,000 · HealthNationwide Children's Hospital Inc: $152,489 · HealthChildren's Hospital Corporation: $136,433 · HealthTexas Children's Hospital: $125,000 · HealthTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $62,587 · Health+1 more: $17,500 · HealthCORIELL INSTITUTE FOR MEDICAL RESEARCH INC: $413,899 · Science & Tech
Other$32,489,110Education$16,316,791Health$1,531,859Science & Tech$413,899

Each grantee by its size and the funder’s share of it; top left is load-bearing

25%50%75%100%$10M$100Mgrantee revenue →↑ funder's share of their budgetMassachusetts Institute of Technology: $5,786,738 over 5y, 0.1% of budgetUNIVERSITY OF MASSACHUSETTS AMHERST FOUNDATION INC: $5,289,935 over 5y, 31% of budgetPresident and Fellows of Harvard College: $1,670,178 over 4y, 0.0% of budgetBaylor College of Medicine: $1,059,981 over 5y, 0.0% of budgetFRED HUTCHINSON CANCER RESEARCH CENTER: $802,630 over 4y, 0.1% of budgetWHITEHEAD INSTITUTE FOR BIOMEDICAL RESEARCH: $734,850 over 4y, 0.4% of budgetOREGON HEALTH & SCIENCE UNIVERSITY FOUNDATION: $725,423 over 5y, 0.5% of budgetCASE WESTERN RESERVE UNIVERSITY: $614,124 over 3y, 0.0% of budgetCALIFORNIA INSTITUTE OF TECHNOLOGY: $601,197 over 3y, 0.0% of budgetCORIELL INSTITUTE FOR MEDICAL RESEARCH INC: $413,899 over 4y, 0.9% of budgetMONTEFIORE MEDICAL CENTER: $303,000 over 5y, 0.0% of budgetUNIVERSITY OF ROCHESTER: $218,094 over 2y, 0.0% of budgetTHE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK: $193,149 over 1y, 0.0% of budgetYale University: $157,972 over 1y, 0.0% of budgetChildren's Hospital Corporation: $136,433 over 2y, 0.0% of budgetTexas Children's Hospital: $125,000 over 1y, 0.0% of budgetTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $62,587 over 1y, 0.0% of budgetAUTISM SCIENCE FOUNDATION: $17,500 over 1y, 1.8% of budget
Grantee by grantee: a decade per organization, before and after funding

A decade per grantee: revenue shaded, grants as bars, all rows on one timeline.

  • Who funds Massachusetts Institute of Technology ↗
  • Who funds UNIVERSITY OF MASSACHUSETTS AMHERST FOUNDATION INC ↗
  • Who funds President and Fellows of Harvard College ↗
  • Who funds Baylor College of Medicine ↗
  • Who funds FRED HUTCHINSON CANCER RESEARCH CENTER ↗
  • Who funds WHITEHEAD INSTITUTE FOR BIOMEDICAL RESEARCH ↗
  • Who funds OREGON HEALTH & SCIENCE UNIVERSITY FOUNDATION ↗
  • Who funds CASE WESTERN RESERVE UNIVERSITY ↗
  • Who funds CALIFORNIA INSTITUTE OF TECHNOLOGY ↗
  • Who funds CORIELL INSTITUTE FOR MEDICAL RESEARCH INC ↗
  • Who funds MONTEFIORE MEDICAL CENTER ↗

How much its grantees rely on government

Each dot is one organization Rett Syndrome Research Trust Inc funds: left to right is the share of its income from government, bottom to top the share from Rett Syndrome Research Trust Inc. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 10%3%10%23%40%funder's share of their income ↑0%25%50%75%100%share of the org’s income from government →median 10%
  • Coriell Institute for Medical Research Inc: 44% of income from government
  • Massachusetts Institute of Technology: 35% of income from government
  • Yale University: 12% of income from government
  • Children's Hospital Corporation: 10% of income from government
  • President and Fellows of Harvard College: 7% of income from government
  • Whitehead Institute for Biomedical Research: 7% of income from government
  • Oregon Health & Science University Foundation: 1% of income from government
no gov moneyreceives it· size = income
1get no government money at all
1report government grants on their 990 we could not trace to a source (not plotted)
0rely on government for over half their income
typical government reliance, FY20–25
How this is measured
Government income is each org’s traced federal awards (USASpending grants and contracts) plus state payments (open checkbooks) as a share of its total revenue (IRS Form 990); the self-reported government-grant line (990 line 1e) is carried for cross-check: a grantee that reports government grants we could not trace to a source is left off the chart rather than shown as receiving none. An association, not a claim that a grant caused the public funding. Coverage is precision-first, a floor rather than a census; state records exist for 9 states, so a grantee outside them shows no state figure (dimmed) rather than a false zero. Federal award amounts are obligations, which can span years, so a single-year share is indicative. 990 filings lag 12 to 24 months.

On method. Every financial figure here is read from IRS e-file XML, the funder’s own 990/990-PF, and from the multi-year returns of the 85 grantees we resolved, each linked to its source. Grantee outcomes are each organization’s own program-service reporting (Form 990, Part III), read as association with funding, never as caused by it. Low-confidence name matches are suppressed rather than guessed. How we build these →

How this is measured
Each figure carries one of six labels. Filed is what the funder reported on its return. Official is another government record about an organization, such as a federal award or a charity register, joined by name where no shared identifier exists. Resolved is an identity we worked out where the filing named a recipient without an EIN, kept only above a measured confidence threshold. Computed is arithmetic over those, like themes, portfolio clusters and co-funder strength. Context is a statistic about a place rather than about an organization, which is what the need overlay is: it describes the area a grantee’s address sits in, not where its work lands. Inferred is drawn by a model from text, like the partnerships read out of public news and organization websites. Each is labeled where it appears.

Generated from the IRS Form 990 e-file return for fiscal year 2025, released 2025. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Source object · view filing

Play a game based on Rett Syndrome Research’s filings →

More from the funding graph

The unnamed billions
grants reported with no recipient in the public record
The regranting layer
51% of grant dollars land in the regranting layer
The DAF merry-go-round
$9.7B circulates between donor-advised funds
The endowment market
who holds foundation money, and what just moved
The camps
funders cluster by geography, not ideology
By state
where grant money is based, and what stays home