International Rett Syndrome Foundation

Nonprofit profile at a glance

EIN
311682518
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Cincinnati, OH, USA
Phone
5138743020
Rating
79
Verdict
SUPPORTED
Rating confidence
Standard
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$4,265,935
Expenses
$5,190,108
Assets
$4,707,103
Liabilities
$307,411

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

Leadership & pay

14 people listed

Executive titles in this filing

  • LESLIE MEHTA ESQ (INTERIM CHIEF EXECUTIVE OFFICER - EXIT 5/25)
  • LAURA HAMEED (CHIEF EXECUTIVE OFFICER - START 4/25)

Highest reported compensation

  • LAURA HAMEED (CHIEF EXECUTIVE OFFICER - START 4/25): $178,813 total reported compensation
  • MEGHAN CORDEIRO (MARKETING & COMMUNICATION DIRECTOR): $118,165 total reported compensation
  • DOMINQUE PICHARD (CHIEF SCIENTIFIC OFFICER): $111,838 total reported compensation

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

Overview

Mission

To accelerate full spectrum research to cure rett syndrome and empower families with information, knowledge, and connectivity.

What it reported doing in 2025

Irsf advances the full spectrum of rett syndrome research - from basic science to clinical development - with the singular goal of delivering effective treatments and, ultimately, a cure. We fund translational research grants worldwide to develop the next generation of rett research, convene leading researchers through our annual science symposia to accelerate discovery and collaboration, and invest directly in the therapeutic pipeline to accelerate treatments that will fundamentally change the lives of those living with rett syndrome. Through our clinical research network and centers of excellence, we drive the development of evidence-based care guidelines, convene key opinion leaders, contribute to a longitudinal data registry, and build upon the rett natural history study, generating the real-world evidence that informs both care standards and regulatory pathways for new therapies. Through our north american clinic network, we promote consistent, high-quality care by making evidence-based clinical guidelines accessible to families and the providers who serve them.

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 61% for direct work, and 39% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 84
  • Transparency & Controls: 75
  • Accountability: 100
  • Sustainability: 21
  • Growth: 40

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 99.1%; rating input score 99
  • Program expense ratio: 80.3%; rating input score 80
  • Fundraising efficiency: $6.62 raised per $1 spent on fundraising; rating input score 22; 22nd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 3 of 6 controls in place; rating input score 50
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • 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: -21.7%; rating input score 4; 4th percentile among comparable filings
  • Total-asset coverage ratio: 0.91; rating input score 30; 30th percentile among comparable filings
  • Liabilities to assets ratio: 0.07; rating input score 56; 56th percentile among comparable filings
  • Officer compensation ratio: 9.6%; rating input score 34; 34th percentile among comparable filings

Growth

  • Program expense growth: 0.9% per year; rating input score 100; 15th percentile among comparable filings
  • Revenue growth: -0.1% per year; rating input score 0; 8th percentile among comparable filings
  • Asset growth: -0.1% per year; rating input score 0; 10th percentile among comparable filings

Details

  • Where the money goes: 99.1% of revenue deployed · 80.3% of spending went to programs
  • Governance: 10 of 10 board members independent · 9 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $4.2M in reported program spending
  • Leadership: top reported pay $179K · 14 people listed · 3 of 6 pay-setting controls reported
  • Consistency: 38 of 38 current checks pass
  • Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 14 filed money-flow records
  • Related organizations: 10 filed related-organization links
  • 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: 7 of 8 not reported.
  • High — Financial Efficiency: Fundraising efficiency scored 22/100.
  • High — Sustainability: Operating margin scored 4/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 30/100.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Officer compensation ratio scored 34/100.
  • Review — Sustainability: Liabilities to assets ratio scored 56/100.