Rett Syndrome Research Trust Inc
Rett Syndrome Research Trust Inc. is a public charity based in Trumbull, Connecticut, formed in 2007. It funds research and other work focused on developing treatments and cures for Rett syndrome and related MECP2 disorders.
Rett Syndrome Research Trust Inc at a glance
In short: Rett Syndrome Research Trust Inc gave $5.4M across 17 grants in 2025 (avg $318K), mostly in Connecticut. 53% of 2025 grantees were new. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $5,410,728
- +39.3% vs 2024
- Grants made (2025)
- 17
- +6.3% vs 2024
- Average grant
- $318,278
- +31.1% vs 2024
- Median grant
- $213,610
- Total assets
- $20,833,981
- +2.3% vs 2024
- New grantees (estimate)
- 53% first-time grantees (9 of 17, 2025; small sample)
- Primary geography
- Connecticut (100% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to Rett Syndrome Research Trust Inc
- Contact
Mailing address: 67 Under Cliff Road, Trumbull, CT 06611
Phone: (203) 445-0041
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who Rett Syndrome Research Trust Inc funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was Pre-Clinical Studies ($1.1M). Together the top 10 received $5.0M.
Grant Size Distribution
95 grants across all recorded years
The most common grant size was in the $100–250K range: 33 grants of 95 (35%).
Geographic Focus
Where this funder awards grants
The 2025 filing reported that all grant dollars went to recipients in Connecticut. The organization is based in Trumbull, Connecticut.
Grant Distribution by State
Share of 2025 grant dollars across all 17 itemized grants.
States
Cities
Is Rett Syndrome Research Trust Inc open to new grantees?
53%
first-time grantees, 2025
In 2025, 9 of 17 grantees (53%) were first-time recipients. With only 17 grantees, that is a small sample: one grantee more or less moves the share by about 6 points. First grants averaged $459K; repeat grants $160K. How we count
Medians: $300K first-time, $98K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2019–2025). 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 2025, annual grant giving ranged from $3.7M (2022) to $9.9M (2023). In 2025 it made 17 grants totaling $5.4M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Pre-Clinical Studies Trumbull, CT | Rett Research | $1,100,000 |
| Profluent Trumbull, CT | Rett Research | $1,000,000 |
| Viralgen Trumbull, CT | Rett Research | $750,000 |
| University of California Davis Trumbull, CT | RNA Editing | $474,894 |
| Jackson Labs Trumbull, CT | Rett Research | $419,317 |
| 4BASEBIO Trumbull, CT | Rett Research | $350,000 |
| Shape Therapeutics Trumbull, CT | Rett Research | $300,000 |
| Evox Trumbull, CT | Rett Research | $240,000 |
| Duke Trumbull, CT | Rett Research | $213,610 |
| Resplice Trumbull, CT | Rett Research | $130,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $20,833,981 | $8,678,380 | $8,239,349 | $5,410,728 | 17 | $544,692 |
| 2024 | $20,356,580 | $9,307,309 | $11,731,465 | $3,885,311 | 16 | $449,600 |
| 2023 | $18,457,084 | $8,523,815 | $12,338,304 | $9,871,592 | 16 | $336,181 |
| 2022 | $14,883,080 | $7,097,993 | $4,042,165 | $3,658,593 | 22 | $30,058 |
| 2021 | $13,582,017 | $8,124,811 | $4,739,121 | $4,584,810 | 24 | $28,318 |
| 2020 | $11,977,275 | $14,024,428 | $3,066,720 | $4,205,466 | 24 | $62,245 |
| 2019 | $9,801,315 | $8,515,113 | $10,665,107 | $6,719,945 | 18 | $38,677 |
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
The organization’s stated mission is to develop treatments and cures for Rett syndrome and related MECP2 disorders. Its stated research priorities include restoring MECP2 protein levels, identifying objective tools to measure Rett symptoms, establishing a clinical trial network, and identifying the function of MECP2 protein. It also sponsors scientific workshops for researchers to exchange data and set research direction.
The organization says it funds leading research institutions and companies working on Rett syndrome and related MECP2 disorders. Its Roadmap to Cures initiative aims to advance three genetic medicines into clinical trials by 2028, with a fundraising goal of $40 million over four years.
Grantmaking
In filing year 2025, the organization reported 17 grants totaling $5,410,728. Grant amounts ranged from $8,741 to $1,100,000, with a median of $213,610.
Among the largest reported grants were $1,100,000 for pre-clinical studies, $1,000,000 to Profluent, and $750,000 to Viralgen, each for Rett research. Other reported awards included $474,894 to the University of California Davis for RNA editing, $419,317 to Jackson Labs for Rett research, and $350,000 to 4BaseBio for Rett research. The filing reported that 100% of grant dollars went to recipients in Connecticut.
For preclinical research agreements with academic institutions, the organization allows overhead and indirect costs equal to 8% of budgeted personnel and laboratory consumables costs. Its policy excludes certain costs—including equipment, travel, and third-party animal purchases—from that allowance. For clinical research, it supports indirect costs of up to 8%; budgets must be appropriate and justified, and equipment and travel costs are generally excluded unless specified as essential and justified.
Leadership & Key People
Leadership team and compensation from IRS filings
Monica Coenraads is the chief executive officer and is identified by the organization as its founder. The 2025 filing lists her as chief executive officer and lists Adrian Bird, Alba Tull, Amy Gilliland, Brad Zelinger, Brian Whitmer, and Ingrid Harding as trustees. Other officers listed on that filing are Heidi Epstein, vice chairman; Lawrence Mattis, secretary; and Marci Valner, treasurer.
The organization’s website also lists Tim Freeman as chief development officer, Genevieve (Jenny) Laforet as chief medical officer, Robert Deans as chief technology officer, and John Sinnamon as director and head of research.
Rett Syndrome Research Trust Inc is led by Monica Coenraads, Chief Executive Officer since 2020 (on filings since 2019); 4 of 17 officers listed in 2025 are compensated.
Officers on the 2025 filing
Monica Coenraads
Chief Executive Officer
Executive Director & Co- → Chief Executive Officer, 2020
On filings since 2019
50 hrs/week
$188K (2019) → $220K (2025)
Anthony P. Schoener
Chairman
On filings since 2019
2 hrs/week
No compensation reported
Adrian Bird
Trustee
On filings since 2019
2 hrs/week
No compensation reported
Alba Tull
Trustee
On filings since 2019
2 hrs/week
No compensation reported
Brad Zelinger
Trustee
On filings since 2019
2 hrs/week
No compensation reported
Ingrid Harding
Co-Founder & Trustee
On filings since 2019
2 hrs/week
No compensation reported
Rachael Stevenson
Trustee
On filings since 2019
2 hrs/week
No compensation reported
Stephanie Bohn
Trustee
On filings since 2019
2 hrs/week
No compensation reported
Brian Whitmer
Trustee
On filings since 2020
2 hrs/week
No compensation reported
Rachel Rothschild
Trustee
On filings since 2020
2 hrs/week
No compensation reported
Amy Gilliand
Trustee
On filings since 2024
2 hrs/week
No compensation reported
Jana Se Von Hehn
Chief Scientific Officer
Director of Research → Chief Scientific Officer, 2023
On filings since 2019
50 hrs/week
$170K (2019) → $220K (2025)
Timothy J. Freeman
Chief Development Officer
On filings since 2023
50 hrs/week
$220K (2023) → $220K (2025)
Robert Deans
Chief Technology Officer
On filings since 2024
50 hrs/week
$215K (2024) → $215K (2025)
Heidi Epstein
Vice Chairman
On filings since 2019
2 hrs/week
No compensation reported
Lawrence Mattis
Secretary
On filings since 2019
2 hrs/week
No compensation reported
Marci Valner
Treasurer
On filings since 2019
2 hrs/week
No compensation reported
Former officers (7)
- Former: Marc Tesler (2019–2023) — Trustee
- Former: Randall Carpenter (2019–2023) — Chief Medical Officer
- Former: Tony Schoener (2022) — Trustee
- Former: Tim Freeman (2019–2020) — Chief Development Officer
- Former: Sharon Lynch (2020) — Associate Director of Research
- Former: Edrian Colina (2019) — Creative Director
- Former: Timothy Riley (2019) — Chief Scientific Officer
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $220K, to Monica Coenraads (Chief Executive Officer). 4 officers or directors reported compensation on that filing.
Frequently asked questions about Rett Syndrome Research Trust Inc
How much does Rett Syndrome Research Trust Inc give each year?
Rett Syndrome Research Trust Inc gave $5.4M across 17 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $3.9M across 16 grants.
What is Rett Syndrome Research Trust Inc's typical grant size?
Rett Syndrome Research Trust Inc's median grant in 2025 was $213,610, and its average grant was $318,278, across 17 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Rett Syndrome Research Trust Inc that year got $459K on average.
Where does Rett Syndrome Research Trust Inc give grants?
Rett Syndrome Research Trust Inc gives mostly in Connecticut: 100% of the grant dollars itemized on its 2025 IRS Form 990 went to recipients there. The most frequent recipient cities were Trumbull, CT (17 grants).
Does Rett Syndrome Research Trust Inc give general operating support?
Not in 2025: none of the 17 grants with a stated purpose on Rett Syndrome Research Trust Inc's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Rett Research" (15 grants).
Who are Rett Syndrome Research Trust Inc's largest grantees?
Rett Syndrome Research Trust Inc's largest 2025 grantees include Pre-Clinical Studies ($1,100,000), Profluent ($1,000,000) and Viralgen ($750,000), according to its 2025 IRS Form 990. Together they received 53% of its itemized 2025 grant dollars.
How large is Rett Syndrome Research Trust Inc?
Rett Syndrome Research Trust Inc reported $20.8M in total assets on its 2025 IRS Form 990. Its revenue that year was $8.7M.
What does Rett Syndrome Research Trust Inc fund?
The organization’s stated mission is to develop treatments and cures for Rett syndrome and related MECP2 disorders. See mission & focus areas ↑
How do I apply for a grant from Rett Syndrome Research Trust Inc?
Rett Syndrome Research Trust Inc has no public application process in the sources Grantable reviewed. Contact the foundation directly before submitting a request.
What is Rett Syndrome Research Trust Inc's EIN?
Rett Syndrome Research Trust Inc's EIN (Employer Identification Number) is 26-0687439. IRS Form 990 filing data is available on this page for 2019–2025.
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 2020 (received by the IRS May 17, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS May 16, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 11, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS July 2, 2024)
- Added Form 990 for fiscal year 2019 (received by the IRS September 8, 2020)
- Added Form 990 for fiscal year 2025 (received by the IRS May 15, 2026)
- IRS filings on file for fiscal years 2020–2024
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