RETT SYNDROME RESEARCH TRUST INC

EIN: 260687439 501(c)(3) Health Care

TRUMBULL, CT

Total Revenue
$8,678,380
Total Expenses
$8,239,349
Total Assets
$20,833,981
Net Assets
$7,159,108
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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year
2007
Legal Domicile
CT
Principal Officer
MONICA COENRAADS
Phone
2034450041
Tax Period
2025-01-01 to 2025-12-31

RETT SYNDROME RESEARCH TRUST INC, founded in 2007, is a community nonprofit in the Health Care sector that reported $8.7M in total revenue in fiscal year 2025. Revenue decreased 7% compared to the prior year. Expenses of $8.2M left a modest 5% surplus.

Mission

THE ORGANIZATION'S MISSION IS FOCUSED ON THE DEVELOPMENT OF TREATMENTS AND CURES FOR RETT SYNDROME AND RELATED MECP2 DISORDERS.

Program Service Accomplishments

Program 1
Expenses: $7,097,393 Revenue: $740,147

THE ORGANIZATION PROVIDES FUNDING TO LEADING RESEARCH INSTITUTIONS AND COMPANIES WORKING ON RETT SYNDROME AND RELATED MECP2 DISORDERS.

Program 2
Expenses: $269,912

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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $7,938,233
Program Service Revenue $195,455
Investment Income $544,692
Other Revenue $0
TOTAL REVENUE $8,678,380

Expense Breakdown

Grants Paid $5,375,683
Salaries & Benefits $1,187,686
Fundraising Expenses $717,939
Program Expenses $7,367,305
Other Expenses $1,675,980
TOTAL EXPENSES $8,239,349

Year-over-Year Comparison

2025 2024 Change
Revenue $8,678,380 $9,307,309 -0.1%
Expenses $8,239,349 $11,731,465 -0.3%
Net Income $439,031 $-2,424,156 -1.2%
Key Indicators
✓ Grants to Organizations ✗ Grants to Individuals ✗ Lobbying ✗ Political Activity ✓ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required
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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

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Governance

Voting Members
13
Independent Members
13
Employees
7
Volunteers
N/A

Governance Policies

✓ Conflict of Interest Policy
✓ Whistleblower Policy
✓ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School
✗ Operated a Hospital
✗ Provided First Class Travel
✗ Reported Conflict of Interest
✗ Reported Asset Diversion
✗ Excess Benefit Transaction
✗ Made Political Expenditures
✗ Engaged in Lobbying
✗ Operated Donor Advised Fund
✗ Maintained Art Collections
✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
5
$220,000
Total Directors
14
$220,000
Key Employees
3
$655,000
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
ADRIAN BIRD TRUSTEE 2.00
Director
$0 $0 $0
ALBA TULL TRUSTEE 2.00
Director
$0 $0 $0
AMY GILLIAND TRUSTEE 2.00
Director
$0 $0 $0
BRAD ZELINGER TRUSTEE 2.00
Director
$0 $0 $0
BRIAN WHITMER TRUSTEE 2.00
Director
$0 $0 $0
HEIDI EPSTEIN VICE CHAIRMAN 2.00
Officer Director
$0 $0 $0
INGRID HARDING CO-FOUNDER AND TRUSTEE 2.00
Director
$0 $0 $0
LAWRENCE MATTIS SECRETARY 2.00
Officer Director
$0 $0 $0
MARCI VALNER TREASURER 2.00
Officer Director
$0 $0 $0
MONICA COENRAADS CHIEF EXECUTIVE OFFICER 50.00
Officer Director
$220,000 $0 $220,000
RACHAEL STEVENSON TRUSTEE 2.00
Director
$0 $0 $0
RACHEL ROTHSCHILD TRUSTEE 2.00
Director
$0 $0 $0
STEPHANIE BOHN TRUSTEE 2.00
Director
$0 $0 $0
ANTHONY P SCHOENER CHAIRMAN 2.00
Officer Director
$0 $0 $0
JANA SE VON HEHN CHIEF SCIENTIFIC OFFICER 50.00
Key Emp
$220,000 $0 $220,000
ROBERT DEANS CHIEF TECHNOLOGY OFFICER 50.00
Key Emp
$215,000 $0 $215,000
TIMOTHY J FREEMAN CHIEF DEVELOPMENT OFFICER 50.00
Key Emp
$220,000 $0 $220,000
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $8,678,380 $8,239,349 $20,833,981 $439,031
2024 $9,307,309 $11,731,465 $20,356,580 $-2,424,156
2023 $8,523,815 $12,338,304 $18,457,084 $-3,814,489
2022 $7,097,993 $4,042,165 $14,883,080 $3,055,828
2021 $8,124,811 $4,739,121 $13,582,017 $3,385,690
2020 $14,024,428 $3,066,720 $11,977,275 $10,957,708
2019 $8,515,113 $10,665,107 $9,801,315 $-2,149,994
2018 $9,664,180 $11,377,192 $11,319,755 $-1,713,012
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