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INTERNATIONAL RETT SYNDROME FOUNDATION

EIN 31-1682518 CINCINNATI, OH

Browse the largest nonprofits in Ohio

Revenue 2025
$4,265,935
Expenses 2025
$5,190,108

Program services were 80.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
H128
Classification
1200
Street
4500 COOPER RD STE 204

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

Mission

TO ACCELERATE FULL SPECTRUM RESEARCH TO CURE RETT SYNDROME AND EMPOWER FAMILIES WITH INFORMATION, KNOWLEDGE, AND CONNECTIVITY.

Activities or mission (Part I)

IRSF HAS A DUAL MISSION TO ACCELERATE RESEARCH AND TREATMENTS WHILE ALSO SUPPORTING AND EDUCATING FAMILIES LIVING WITH RETT SYNDROME.

  • 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.

    Expenses $3,549,456 · Grants $1,611,176 · Revenue $323,344

  • IRSF STANDS ALONGSIDE FAMILIES AT EVERY STAGE OF THE RETT SYNDROME JOURNEY - FROM DIAGNOSIS THROUGH ADULTHOOD. WE BUILD AND SUPPORT THE COMMUNITY IN NUMEROUS WAYS. OUR FAMILY EMPOWERMENT TEAM DELIVERS EXPERT-LED EDUCATIONAL PROGRAMMING THROUGH WEBINARS AND REGIONAL IN-PERSON EDUCATION DAYS AND RESOURCE DEVELOPMENT, ENSURING FAMILIES HAVE ACCESS TO THE LATEST CLINICAL AND RESEARCH INSIGHTS REGARDLESS OF WHERE THEY LIVE. OUR COMMUNITY ENGAGEMENT TEAM CONNECTS FAMILIES WITH IRSF AND WITH EACH OTHER TO ENSURE THEY HAVE AROUND THE CLOCK GUIDANCE, CONNECTION, AND SUPPORT. WE DEVELOP AND DISTRIBUTE EDUCATIONAL RESOURCES TAILORED FOR FAMILIES, CAREGIVERS, EDUCATORS, AND THERAPISTS. WE ENGAGE FEDERAL POLICYMAKERS TO KEEP RETT SYNDROME A NATIONAL RESEARCH FUNDING PRIORITY AND WORK DIRECTLY WITH INDUSTRY PARTNERS TO AMPLIFY THE PATIENT VOICE IN DRUG DEVELOPMENT TO ENSURE CLINICAL TRIAL DESIGN REFLECTS THE REALITIES OF LIVING WITH RETT.

    Expenses $619,501

As filed on the 2025 return.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • David Pass Pharmd

    CHAIRMAN

    Total calculated
    $0
    Hours/week
    1

  • Leslie Mehta Esq

    INTERIM CHIEF EXECUTIVE OFFICER - EXIT 5/25

    Total calculated
    $88,542
    From this org
    $88,542
    From related orgs
    $0
    Other
    $0
    Hours/week
    0.5

  • Mitch Bleske

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Steve Wood

    VICE CHAIRMAN

    Total calculated
    $0
    Hours/week
    0.5

  • Alan Shukovsky

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Joseph Horrigan MD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Laura Stoppel PhD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Lisa Monteggia PhD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Mary Forrest Engel

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Parthy Evans

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Steve Marconi CPA

    TRUSTEE

    Total calculated
    $0
    Hours/week
    0.5

  • Laura Hameed

    CHIEF EXECUTIVE OFFICER - START 4/25

    Total calculated
    $178,813
    From this org
    $175,000
    From related orgs
    $0
    Other
    $3,813
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $175,000
    Bonus
    $0
    Other
    $0
    Deferred
    $3,813
    Nontaxable benefits
    $0
    Filer's total
    $178,813

  • Dominque Pichard

    CHIEF SCIENTIFIC OFFICER

    Total calculated
    $111,838
    From this org
    $111,802
    From related orgs
    $0
    Other
    $36
    Hours/week
    40

  • Meghan Cordeiro

    MARKETING & COMMUNICATION DIRECTOR

    Total calculated
    $118,165
    From this org
    $113,218
    From related orgs
    $0
    Other
    $4,947
    Hours/week
    40

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $4,265,935
    Expenses
    $5,190,108
    Contributions
    $3,822,542
    Grants paid
    $1,611,176
  • 2024
    Revenue
    $4,813,748
    Expenses
    $5,531,022
    Contributions
    $3,808,219
    Grants paid
    $1,856,999
  • 2023
    Revenue
    $4,855,820
    Expenses
    $3,723,772
    Contributions
    $3,586,302
    Grants paid
    $856,917
  • 2022
    Revenue
    $3,669,308
    Expenses
    $5,494,227
    Contributions
    $3,581,751
    Grants paid
    $1,969,729

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2021 · 990

    Revenue
    $4,132,287
    Expenses
    $4,097,063
    Assets (EOY)
    $7,416,506

  • 2020 · 990

    Revenue
    $3,850,950
    Expenses
    $2,465,808
    Assets (EOY)
    $6,281,992

  • 2019 · 990

    Revenue
    $4,782,320
    Expenses
    $2,898,109
    Assets (EOY)
    $6,238,495

  • 2018 · 990

    Revenue
    $3,648,554
    Expenses
    $3,606,274
    Assets (EOY)
    $5,507,933

  • 2017 · 990

    Revenue
    $3,821,932
    Expenses
    $5,001,314
    Assets (EOY)
    $6,181,787

  • 2016 · 990

    Revenue
    $4,666,339
    Expenses
    $3,639,939
    Assets (EOY)
    $5,219,377

  • 2015 · 990

    Revenue
    $4,531,664
    Expenses
    $4,757,618
    Assets (EOY)
    $6,236,910

  • 2014 · 990

    Revenue
    $4,630,291
    Expenses
    $4,527,690
    Assets (EOY)
    $6,248,944

  • 2013 · 990

    Revenue
    $4,448,800
    Expenses
    $3,949,496
    Assets (EOY)
    $5,595,449

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $5,583,125
    Assets (EOY)
    $5,770,975

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 11 November 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 9 November 2026 and read 9 November 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.