Rett Syndrome Research Trust Inc

Nonprofit profile at a glance

EIN
260687439
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Trumbull, CT, USA
Phone
2034450041
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$8,678,380
Expenses
$8,239,349
Assets
$20,833,981
Liabilities
$13,674,873

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • MONICA COENRAADS (CHIEF EXECUTIVE OFFICER)

Highest reported compensation

  • MONICA COENRAADS (CHIEF EXECUTIVE OFFICER): $220,000 total reported compensation
  • JANA SE VON HEHN (CHIEF SCIENTIFIC OFFICER): $220,000 total reported compensation
  • TIMOTHY J FREEMAN (CHIEF DEVELOPMENT OFFICER): $220,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The organization's mission is focused on the development of treatments and cures for rett syndrome and related mecp2 disorders.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 73% of its reported program spending out as grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and most voting board members are independent. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 82
  • Transparency & Controls: 62
  • Accountability: 100
  • Sustainability: 44
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 85.9%; rating input score 86
  • Program expense ratio: 89.4%; rating input score 89
  • Fundraising efficiency: $11.06 raised per $1 spent on fundraising; rating input score 39; 39th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 85.7%; rating input score 86; 2nd percentile among comparable filings
  • Pay-setting controls: 2 of 6 controls in place; rating input score 33
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Scored; rating input score 0
  • Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 5.1%; rating input score 43; 43rd percentile among comparable filings
  • Total-asset coverage ratio: 2.53; rating input score 65; 65th percentile among comparable filings
  • Liabilities to assets ratio: 0.66; rating input score 11; 11th percentile among comparable filings
  • Officer compensation ratio: 10.6%; rating input score 32; 32nd percentile among comparable filings

Growth

  • Program expense growth: 0.3% per year; rating input score 100; 13th percentile among comparable filings
  • Revenue growth: 5.5% per year; rating input score 100; 42nd percentile among comparable filings
  • Asset growth: 11.6% per year; rating input score 100; 64th percentile among comparable filings

Details

  • Where the money goes: 85.9% of revenue deployed · 89.4% of spending went to programs
  • Governance: 13 of 13 board members independent · 9 of 9 filing controls reported
  • Programs: 4 filed program accomplishments · $7.4M in reported program spending
  • Leadership: top reported pay $220K · 17 people listed · 2 of 6 pay-setting controls reported
  • Highest-paid contractors: 2 contractors listed · $263K reported
  • Consistency: 23 of 25 current checks pass · 2 findings to review
  • Schedules: 7 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 21 filed money-flow records
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight scored 0/100.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 39/100.
  • Moderate — Sustainability: Operating margin scored 43/100.
  • High — Sustainability: Liabilities to assets ratio scored 11/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Officer compensation ratio scored 32/100.