The Rett Syndrome Research Trust (RSRT) is a 501(c)(3) nonprofit organization based in Trumbull, Connecticut. Founded in 2008, RSRT operates as a patient advocacy organization and research funder dedicated to accelerating the development of treatments and cures for Rett syndrome and related MECP2 disorders. The organization functions as the largest funder of Rett syndrome research worldwide and plays a central role in advancing the scientific research agenda in this field.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$20.4M
+10.3% YoY
Annual Giving
$3.9M
-60.6% YoY
Grant Count
16
+0.0% YoY
Avg Grant Size
$243K
-60.6% YoY
Mission & Focus Areas
RSRT's singular goal is to find cures for Rett syndrome as efficiently and quickly as possible. The organization is driven by personal commitment—the CEO and Chief Development Officer each have a child with Rett syndrome, and twelve board members have a child, grandchild, or sibling with the condition.
Primary program areas include:
- Research Funding: Providing funding to leading research institutions and companies working on Rett syndrome and related MECP2 disorders
- Research Priorities: Supporting research aimed at restoring levels of MECP2 protein, identifying objective tools to measure Rett symptoms, establishing clinical trial networks, and identifying the function of the MECP2 protein
- Scientific Workshops: Sponsoring workshops that bring leading Rett researchers together with elite scientists in synergistic fields to exchange data and set research direction
Grantmaking
RSRT provides funding to research institutions and biopharmaceutical companies. Recent grant activity includes awards to institutions such as the Massachusetts Institute of Technology (MIT) for RNA editing research in 2023.
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Geographic Focus
Where this funder awards grants
RSRT funds research primarily through leading research institutions and companies, with a global scope. The organization maintains presence in both the United States and the United Kingdom.
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
Most Recent Financial Data (2023):
- Total Assets: $18.5 million
- Total Revenue: $8.52 million
- Total Expenses: $12.3 million
- Total Liabilities: $11.3 million
- Number of Employees: 8
Updated Financial Data (2024):
- Total Assets: $20.36 million
- Total Giving: $9.35 million
The organization has maintained tax-exempt status since February 2008 (EIN: 26-0687439).
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $20,356,580 | $18,457,084 | $14,883,080 |
| Revenue | $9,307,309 | $8,523,815 | $7,097,993 |
| Expenses | $11,731,465 | $12,338,304 | $4,042,165 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $449,600 | $336,181 | $30,058 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
Grant Size Distribution
102 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Leadership team and compensation from IRS filings
Executive Leadership:
- Monica Coenraads — Founder, Chief Executive Officer
- Tim Freeman — Chief Development Officer
- Genevieve (Jenny) Laforet, MD, PhD — Chief Medical Officer
- Robert Deans, PhD — Chief Technology Officer
- John Sinnamon, PhD — Director, Head of Research
- David Backer — Strategic Advisor for CMC
- Jennifer Reynolds — Research Manager
- Ricki Davis — Administrative Officer
- Amanda Bright — Community Engagement Coordinator
Scientific Leadership:
- Jana Von Hehn — Chief Scientific Officer
Board of Trustees:
- Sir Adrian Bird, PhD
- Stephanie Bohn
- Heidi Epstein — Vice Chair
- Alba Tull — Board Member
The organization's scientific team has over 80 years of combined experience in drug development and clinical trials.
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| ADRIAN BIRD | TRUSTEE | 2 | — |
| ALBA TULL | TRUSTEE | 2 | — |
| BRAD ZELINGER | TRUSTEE | 2 | — |
| BRIAN WHITMER | TRUSTEE | 2 | — |
| HEIDI EPSTEIN | VICE CHAIRMAN | 2 | — |
| INGRID HARDING | CO-FOUNDER AND TRUSTEE | 2 | — |
| LAWRENCE MATTIS | SECRETARY | 2 | — |
| AMY GILLIAND | TRUSTEE | 2 | — |
| MARCI VALNER | TREASURER | 2 | — |
| MONICA COENRAADS | CHIEF EXECUTIVE OFFICER | 50 | $220,000 |
| RACHAEL STEVENSON | TRUSTEE | 2 | — |
| RACHEL ROTHSCHILD | TRUSTEE | 2 | — |
| STEPHANIE BOHN | TRUSTEE | 2 | — |
| ROBERT DEANS | CHIEF TECHNOLOGY OFFICER | 50 | $215,000 |
| TIMOTHY J FREEMAN | CHIEF DEVELOPMENT OFFICER | 50 | $220,000 |
| JANA SE VON HEHN | CHIEF SCIENTIFIC OFFICER | 50 | $220,000 |
Recent News & Activity
Recent developments and announcements
RSRT announced 2025 research awards to advance genetic medicines, continuing its commitment to funding cutting-edge research in the field. The organization maintains an active research funding program and regularly announces new grant awards to support the development of treatments and cures for Rett syndrome.
Rett Syndrome Research Trust Announces 2025 Research Awards to Advance GeneticSubject Areas
Focus areas based on grantmaking activity
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Data last updated April 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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