Nonprofit · EIN 26-0687439
RETT SYNDROME RESEARCH TRUST INC
Tax-exempt · TRUMBULL, CT 06611
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $8,678,380 | $8,239,349 | $439,031 | $20,833,981 | $13,674,873 | $7,159,108 |
| December 31, 2024 | 990 | $9,307,309 | $11,731,465 | -$2,424,156 | $20,356,580 | $15,636,502 | $4,720,078 |
| December 31, 2023 | 990 | $8,523,815 | $12,338,304 | -$3,814,489 | $18,457,084 | $11,321,272 | $7,135,812 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $7,938,233
- Program service revenue
- $195,455
- Investment income
- $544,692
- Net gain from sales of assets
- $1,229
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $5,375,683
- Compensation of officers, directors and key employees
- $875,000
- Other salaries and wages
- $169,399
- Salaries, compensation and benefits (total)
- $1,187,686
- Professional fundraising fees
- $0
- Occupancy
- $4,500
- Program services (functional)
- $7,367,305
- Management and general (functional)
- $154,105
- Fundraising (functional)
- $717,939
Balance sheet and other
- Total assets, start of year
- $20,356,580
- Total assets, end of year
- $20,833,981
- Total liabilities, end of year
- $13,674,873
- Net assets, end of year
- $7,159,108
- Net assets without donor restrictions
- $7,159,108
- Gross receipts
- $8,882,305
- Employees
- 7
- Volunteers
- 0
- Year formed
- 2007
- State of legal domicile
- CT
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| MONICA COENRAADS | CHIEF EXECUTIVE OFFICER Trustee or director, Officer | 50 | $220,000 |
| JANA SE VON HEHN | CHIEF SCIENTIFIC OFFICER Key employee | 50 | $220,000 |
| TIMOTHY J FREEMAN | CHIEF DEVELOPMENT OFFICER Key employee | 50 | $220,000 |
| ROBERT DEANS | CHIEF TECHNOLOGY OFFICER Key employee | 50 | $215,000 |
| ADRIAN BIRD | TRUSTEE Trustee or director | 2 | $0 |
| ALBA TULL | TRUSTEE Trustee or director | 2 | $0 |
| AMY GILLIAND | TRUSTEE Trustee or director | 2 | $0 |
| BRAD ZELINGER | TRUSTEE Trustee or director | 2 | $0 |
| BRIAN WHITMER | TRUSTEE Trustee or director | 2 | $0 |
| HEIDI EPSTEIN | VICE CHAIRMAN Trustee or director, Officer | 2 | $0 |
| INGRID HARDING | CO-FOUNDER AND TRUSTEE Trustee or director | 2 | $0 |
| LAWRENCE MATTIS | SECRETARY Trustee or director, Officer | 2 | $0 |
| MARCI VALNER | TREASURER Trustee or director, Officer | 2 | $0 |
| RACHAEL STEVENSON | TRUSTEE Trustee or director | 2 | $0 |
| RACHEL ROTHSCHILD | TRUSTEE Trustee or director | 2 | $0 |
2 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| STEPHANIE BOHN | TRUSTEE Trustee or director | 2 | $0 |
| ANTHONY P SCHOENER | CHAIRMAN Trustee or director, Officer | 2 | $0 |
990 for the year ended December 31, 2024: 16 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| MONICA COENRAADS | CHIEF EXECUTIVE OFFICER Trustee or director, Officer | 50 | $220,000 |
| TIMOTHY J FREEMAN | CHIEF DEVELOPMENT OFFICER Key employee | 50 | $220,000 |
| JANA SE VON HEHN | CHIEF SCIENTIFIC OFFICER Key employee | 50 | $220,000 |
| ROBERT DEANS | CHIEF TECHNOLOGY OFFICER Key employee | 50 | $215,000 |
| ADRIAN BIRD | TRUSTEE Trustee or director | 2 | $0 |
| ALBA TULL | TRUSTEE Trustee or director | 2 | $0 |
| BRAD ZELINGER | TRUSTEE Trustee or director | 2 | $0 |
| BRIAN WHITMER | TRUSTEE Trustee or director | 2 | $0 |
| HEIDI EPSTEIN | VICE CHAIRMAN Trustee or director, Officer | 2 | $0 |
| INGRID HARDING | CO-FOUNDER AND TRUSTEE Trustee or director | 2 | $0 |
| LAWRENCE MATTIS | SECRETARY Trustee or director, Officer | 2 | $0 |
| AMY GILLIAND | TRUSTEE Trustee or director | 2 | $0 |
| MARCI VALNER | TREASURER Trustee or director, Officer | 2 | $0 |
| RACHAEL STEVENSON | TRUSTEE Trustee or director | 2 | $0 |
| RACHEL ROTHSCHILD | TRUSTEE Trustee or director | 2 | $0 |
| STEPHANIE BOHN | TRUSTEE Trustee or director | 2 | $0 |
990 for the year ended December 31, 2023: 17 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| MONICA COENRAADS | CHIEF EXECUTIVE OFFICER Trustee or director, Officer | 50 | $220,000 |
| TIMOTHY FREEMAN | CHIEF DEVELOPMENT OFFICER Trustee or director, Officer | 50 | $220,000 |
| JANA VON HEHN | CHIEF SCIENTIFIC OFFICER Trustee or director, Officer | 50 | $203,333 |
| RANDALL CARPENTER | CHIEF MEDICAL OFFICER Trustee or director, Officer | 25 | $165,000 |
| ADRIAN BIRD | TRUSTEE Trustee or director | 2 | $0 |
| ALBA TULL | TRUSTEE Trustee or director | 2 | $0 |
| BRAD ZELINGER | TRUSTEE Trustee or director | 2 | $0 |
| BRIAN WHITMER | TRUSTEE Trustee or director | 2 | $0 |
| HEIDI EPSTEIN | VICE CHAIRMAN Trustee or director, Officer | 2 | $0 |
| INGRID HARDING | CO-FOUNDER AND TRUSTEE Trustee or director | 2 | $0 |
| LAWRENCE MATTIS | SECRETARY Trustee or director, Officer | 2 | $0 |
| MARC TESLER | TRUSTEE Trustee or director | 2 | $0 |
| MARCI VALNER | TREASURER Trustee or director, Officer | 2 | $0 |
| RACHAEL STEVENSON | TRUSTEE Trustee or director | 2 | $0 |
| RACHEL ROTHSCHILD | TRUSTEE Trustee or director | 2 | $0 |
| STEPHANIE BOHN | TRUSTEE Trustee or director | 2 | $0 |
| ANTHONY SCHOENER | CHAIRMAN Trustee or director | 2 | $0 |
Address and contacts
- Address (IRS master file)
- 67 UNDER CLIFF RD, TRUMBULL, CT 06611-2550
- Principal officer (990 for 2025)
- MONICA COENRAADS, 67 UNDERCLIFF ROAD, TRUMBULL, CT 06611
- Signed the 990
- MONICA COENRAADS, CHIEF EXECUTIVE OFFICER
- Phone
- (203) 445-0041
- Website
- WWW.REVERSERETT.ORG
- Return prepared by
- ROLLERI & SHEPPARD CPAS LLP
Mission
THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.
Program accomplishments
- THE ORGANIZATION PROVIDES FUNDING TO LEADING RESEARCH INSTITUTIONS AND COMPANIES WORKING ON RETT SYNDROME AND RELATED MECP2 DISORDERS.Expenses $7,097,393 · grants $5,375,683 · revenue $740,147
- 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.Expenses $269,912
- THE 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.
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 26-0687439
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2008
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Health care (E12)
- Assets (IRS master file)
- $20,833,981
- Income (IRS master file)
- $8,882,305
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $8,678,380 | $8,239,349 | $20,833,981 | IRS |
| 990 | December 2024 | $9,307,309 | $11,731,465 | $20,356,580 | XML |
| 990 | December 2023 | $8,523,815 | $12,338,304 | $18,457,084 | XML |
| 990 | December 2022 | $7,097,993 | $4,042,165 | $14,883,080 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 26-0687439).
Questions about RETT SYNDROME RESEARCH TRUST INC
- What is the EIN of RETT SYNDROME RESEARCH TRUST INC?
- The employer identification number (EIN) of RETT SYNDROME RESEARCH TRUST INC is 26-0687439.
- Is RETT SYNDROME RESEARCH TRUST INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2008.
- Are donations to RETT SYNDROME RESEARCH TRUST INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does RETT SYNDROME RESEARCH TRUST INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of RETT SYNDROME RESEARCH TRUST INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did RETT SYNDROME RESEARCH TRUST INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of RETT SYNDROME RESEARCH TRUST INC?
- The 990 for the year ended December 31, 2025 names MONICA COENRAADS.
- Who are the officers and directors of RETT SYNDROME RESEARCH TRUST INC?
- The 990 for the year ended December 31, 2025 lists 17 people; 4 received compensation from the organization, the highest $220,000 (MONICA COENRAADS, CHIEF EXECUTIVE OFFICER).
- How much revenue does RETT SYNDROME RESEARCH TRUST INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $8,678,380, expenses of $8,239,349 and total assets of $20,833,981 at year end.
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