International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) is a public charity based in Cincinnati, Ohio. It supports Rett syndrome research, family support, and advocacy, with the stated aim of accelerating research toward a cure and improving the lives of individuals and families affected by Rett syndrome.
International Rett Syndrome Foundation at a glance
In short: International Rett Syndrome Foundation gave $1.7M across 12 grants in 2024 (avg $140K), top state Massachusetts. 67% of 2024 grantees were new. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $1,678,482
- +144.3% vs 2023
- Grants made (2024)
- 12
- +71.4% vs 2023
- Average grant
- $139,874
- +42.5% vs 2023
- Median grant
- $122,991
- Total assets
- $5,325,567
- -15.0% vs 2023
- New grantees (estimate)
- 67% first-time grantees (8 of 12, 2024; small sample)
- Primary geography
- Massachusetts (21% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to International Rett Syndrome Foundation
- Review Cycle
- The Bridge Awards’ full-proposal deadline was August 14, 2026. This deadline has passed. The stated decision date was December 2026, with an earliest start date of January 1, 2027.
- Deadline
- The Bridge Awards’ full-proposal deadline was August 14, 2026.
- Contact
Mailing address: 4500 Cooper Road Suite 204, Cincinnati, OH 45242
Phone: (513) 874-3020
Website: https://rettsyndrome.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who International Rett Syndrome Foundation funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
The largest 2024 recipient was The General Hospital Corporation dba Massachusetts General Hospital ($300K). Together the top 10 received $1.6M.
Grant Size Distribution
46 grants across all recorded years
The most common grant size was in the $100–250K range: 24 grants of 46 (52%).
Geographic Focus
Where this funder awards grants
IRSF says it funds research around the world. Its 2024 grants went to recipients in Massachusetts, Wisconsin, Colorado, North Carolina, Tennessee, Texas, New York, Virginia, and California. The largest shares of 2024 grant dollars went to recipients in Massachusetts (21%), Wisconsin (18%), Colorado (16%), and North Carolina (13%).
Grant Distribution by State
Share of 2024 grant dollars across all 12 itemized grants.
States
Cities
Is International Rett Syndrome Foundation open to new grantees?
67%
first-time grantees, 2024
In 2024, 8 of 12 grantees (67%) were first-time recipients. With only 12 grantees, that is a small sample: one grantee more or less moves the share by about 8 points. First grants averaged $156K; repeat grants $107K. How we count
Medians: $131K first-time, $120K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2019–2024). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2024, annual grant giving ranged from $115K (2020) to $1.7M (2024). In 2024 it made 12 grants totaling $1.7M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The General Hospital Corporation dba Massachusetts General Hospital Somerville, MA | Rett Syndrome Research | $300,000 |
| University of Wisconsin-Madison Madison, WI | Rett Syndrome Research | $300,000 |
| Vanderbilt University Nashville, TN | Rett Syndrome Research | $137,500 |
| The Regents of the University of Colorado Denver, CO | Rett Syndrome Research | $137,500 |
| The University of Texas Southwestern Medical Center Dallas, TX | Rett Syndrome Research | $137,500 |
| University of Colorado Denver Denver, CO | Rett Syndrome Research | $125,000 |
| North Carolina State University Raleigh, NC | Rett Syndrome Research | $120,982 |
| The Rockefeller University New York, NY | Rett Syndrome Research | $120,000 |
| The University of North Carolina at Chapel Hill Chapel Hill, NC | Rett Syndrome Research | $100,000 |
| University of Virginia Rector & Visitors Charlottesville, VA | Rett Syndrome Research | $100,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $5,325,567 | $4,813,748 | $5,531,022 | $1,678,482 | 12 | $261,285 |
| 2023 | $6,263,405 | $4,855,820 | $3,723,772 | $687,123 | 7 | $88,797 |
| 2022 | $6,438,774 | $3,669,308 | $5,494,227 | $1,471,215 | 13 | $-108,882 |
| 2021 | $7,416,506 | $4,132,287 | $4,097,063 | $1,189,258 | 11 | $243,965 |
| 2020 | $6,281,992 | $3,850,950 | $2,465,808 | $115,499 | 3 | $94,218 |
| 2019 | $6,238,495 | $4,782,320 | $2,898,109 | $1,040,581 | 5 | $154,956 |
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
IRSF’s mission is “to accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.” Its research program supports basic and translational research, postdoctoral researchers, compound development, clinical trials, and a clinical research network. The organization describes its research strategy as advancing critical research, driving therapeutic development, and supporting clinical trial success.
The 2024 filing describes additional work in family education, including monthly webinars, regional education days, educational materials, and family engagement. It also describes advocacy and support for a network of clinics developing clinical-care guidelines.
The 2024 grants were designated for Rett syndrome research. Among the grantees, North Carolina State University describes its mission as supporting the university’s colleges, libraries, and other university-connected functions. The Rockefeller University describes itself as a biomedical research and graduate education institution whose laboratories conduct basic and clinical research.
Grantmaking
The 2024 filing lists 12 grants totaling $1,678,482. Grant amounts ranged from $50,000 to $300,000, with a median of $122,991. Each listed grant’s purpose was Rett syndrome research.
Notable 2024 grants included $300,000 each to The General Hospital Corporation dba Massachusetts General Hospital and the University of Wisconsin–Madison; $137,500 each to Vanderbilt University, the Regents of the University of Colorado, and the University of Texas Southwestern Medical Center; and $120,982 to North Carolina State University.
The filing describes a grant process in which letters of intent are reviewed for fit with the research program and grant mechanism. Eligible applicants are invited to submit a full application, which is considered through scientific peer review. Recommended awards go to the board for approval. Awardees sign an acceptance agreement and submit two progress reports annually.
IRSF’s 2026 Rett Syndrome Bridge Awards offer up to $75,000 for one year to sustain Rett research affected by disruptions in federal research funding. The published cycle required no letter of intent and invited full proposals from all applicants.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Leslie Mehta, Esq. as Interim Chief Executive Officer; David Pass, PharmD, as Chairman; Steve Wood as Vice Chairman; and Mitch Bleske as Treasurer. Trustees listed were Jospeh Horrigan, MD; Lisa Monteggia, PhD; Alan Shukovsky; Mary Forrest Engel; and Laura Stoppel, PhD. Gordon Rich was listed as Founding Seat – Non Voting.
International Rett Syndrome Foundation is led by Leslie Mehta Esq., Interim Chief Executive Officer since 2024 (on filings since 2021); 6 of 17 officers listed in 2024 are compensated.
Officers on the 2024 filing
Leslie Mehta Esq.
Interim Chief Executive Officer
Trustee → Secretary, 2023
Secretary → Interim Chief Executive Officer, 2024
On filings since 2021
0.5 hrs/week
$5K (2024)
Melissa Kennedy - Exit
Chief Executive Officer
New on the 2024 filing
40 hrs/week
$187K (2024)
David Pass PharmD
Chairman
Trustee - Started → Vice Chairman, 2020
Vice Chairman → Chairman, 2023
On filings since 2019
1 hr/week
No compensation reported
Timothy Frank
Development Director
Chief Marketing & Development → Chief Market & Development Officer, 2023
Chief Market & Development Officer → Development Director, 2024
On filings since 2021
40 hrs/week
$113K (2021) → $116K (2024)
Meghan Cordeiro
Marketing & Communication Director
Marketing & Communications Director → Marketing & Communication Director, 2024
On filings since 2023
40 hrs/week
$104K (2023) → $113K (2024)
Jospeh Horrigan MD
Trustee
Trustee - Started → Trustee, 2020
On filings since 2019
0.5 hrs/week
No compensation reported
Lisa Monteggia PhD
Trustee
Trustee - Started → Trustee, 2020
On filings since 2019
0.5 hrs/week
No compensation reported
Alan Shukovsky
Trustee
On filings since 2020
0.5 hrs/week
No compensation reported
Laura Stoppel PhD
Trustee
On filings since 2023
0.5 hrs/week
No compensation reported
Mary Forrest Engel
Trustee
On filings since 2023
0.5 hrs/week
No compensation reported
Parthy Evans
Trustee - Start
New on the 2024 filing
0.5 hrs/week
No compensation reported
Steve Marconi CPA
Trustee - Start
New on the 2024 filing
0.5 hrs/week
No compensation reported
Nupur Garg
Vice President of Research
On filings since 2023
40 hrs/week
$125K (2023) → $187K (2024)
Drew Jones
Vice President of Clinical Development
New on the 2024 filing
40 hrs/week
$109K (2024)
Gordon Rich
Founding Seat - Non Voting
Treasurer → Trustee - Left, 2021
Trustee - Left → Founding Seat - Non Voting, 2022
On filings since 2019
0.5 hrs/week
No compensation reported
Mitch Bleske
Treasurer
Trustee - Started → Trustee, 2020
Trustee → Treasurer, 2021
On filings since 2019
1 hr/week
No compensation reported
Steve Wood
Vice Chairman
Trustee → Vice Chairman, 2024
On filings since 2023
0.5 hrs/week
No compensation reported
Former officers (8)
- Former: Beth Farnum (2019–2023) — Trustee
- Former: Christian McMahan (2019–2023) — Vice Chairman
- Former: Melissa Kennedy (2019–2023) — Executive Director
- Former: Steve Tomes (2019–2023) — Trustee
- Former: William Babiarz (2019–2023) — Trustee
- Former: Dominique Pichard (2020–2023) — Chief Science Officer
- Former: Peter White (2019–2021) — Trustee - Left
- Former: John Foard (2019) — Trustee - Left
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $187K, to Nupur Garg (VP of Research). 6 officers or directors reported compensation on that filing.
Frequently asked questions about International Rett Syndrome Foundation
How much does International Rett Syndrome Foundation give each year?
International Rett Syndrome Foundation gave $1.7M across 12 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $687K across 7 grants.
What is International Rett Syndrome Foundation's typical grant size?
International Rett Syndrome Foundation's median grant in 2024 was $122,991, and its average grant was $139,874, across 12 grants on its 2024 IRS Form 990. Organizations receiving their first grant from International Rett Syndrome Foundation that year got $156K on average.
Where does International Rett Syndrome Foundation give grants?
International Rett Syndrome Foundation's top state is Massachusetts, with 21% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Wisconsin (18%) and Colorado (16%). The most frequent recipient cities were Denver, CO (2 grants).
Does International Rett Syndrome Foundation give general operating support?
Not in 2024: none of the 12 grants with a stated purpose on International Rett Syndrome Foundation's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Rett Syndrome Research" (12 grants).
Who are International Rett Syndrome Foundation's largest grantees?
International Rett Syndrome Foundation's largest 2024 grantees include The General Hospital Corporation dba Massachusetts General Hospital ($300,000), University of Wisconsin-Madison ($300,000) and Vanderbilt University ($137,500), according to its 2024 IRS Form 990. Together they received 44% of its itemized 2024 grant dollars.
How large is International Rett Syndrome Foundation?
International Rett Syndrome Foundation reported $5.3M in total assets on its 2024 IRS Form 990. Its revenue that year was $4.8M.
What does International Rett Syndrome Foundation fund?
IRSF’s mission is “to accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.” Its research program supports basic and translational research, postdoctoral researchers, compound development, clinical trials, and a clinical research network. See mission & focus areas ↑
How do I apply for a grant from International Rett Syndrome Foundation?
International Rett Syndrome Foundation has no public application process in the sources Grantable reviewed. Check rettsyndrome.org for current guidelines, or contact the foundation directly before submitting a request.
What is International Rett Syndrome Foundation's EIN?
International Rett Syndrome Foundation's EIN (Employer Identification Number) is 31-1682518. IRS Form 990 filing data is available on this page for 2019–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS May 8, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS June 8, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS June 21, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS July 14, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS July 15, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS July 31, 2025)
- IRS filings on file for fiscal years 2019–2024
Live grants for the work International Rett Syndrome Foundation funds
Medical Research Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in International Rett Syndrome Foundation's focus areas in our free grants database
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Cite this profile
Grantable. (2026). International Rett Syndrome Foundation funder profile. GrantGraph. Retrieved October 20, 2026, from https://grantable.co/funders/international-rett-syndrome-foundation-morg_c7e1375f451542e9becf9872381e7543
BibTeX
@misc{grantable_311682518_2026,
author = {{Grantable}},
title = {{International Rett Syndrome Foundation funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/international-rett-syndrome-foundation-morg_c7e1375f451542e9becf9872381e7543},
note = {Accessed 2026-10-20. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from International Rett Syndrome Foundation's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
International Rett Syndrome Foundation down — hundreds of funders to go?