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RETT SYNDROME RESEARCH TRUST INC

EIN 26-0687439 TRUMBULL, CT

Revenue 2025
$8,678,380
Expenses 2025
$8,239,349

Program services were 89.4% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
E12
Classification
1000
Street
67 UNDER CLIFF RD

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).

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.

  • ADRIAN BIRD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • ALBA TULL

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • AMY GILLIAND

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • BRAD ZELINGER

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • BRIAN WHITMER

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • HEIDI EPSTEIN

    VICE CHAIRMAN

    Total calculated
    $0
    Hours/week
    2

  • INGRID HARDING

    CO-FOUNDER AND TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • LAWRENCE MATTIS

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • MARCI VALNER

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • MONICA COENRAADS

    CHIEF EXECUTIVE OFFICER

    Total calculated
    $220,000
    From this org
    $220,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $220,000
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $220,000

  • RACHAEL STEVENSON

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • RACHEL ROTHSCHILD

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • STEPHANIE BOHN

    TRUSTEE

    Total calculated
    $0
    Hours/week
    2

  • ANTHONY P SCHOENER

    CHAIRMAN

    Total calculated
    $0
    Hours/week
    2

  • JANA SE VON HEHN

    CHIEF SCIENTIFIC OFFICER

    Total calculated
    $220,000
    From this org
    $220,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $220,000
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $220,000

  • ROBERT DEANS

    CHIEF TECHNOLOGY OFFICER

    Total calculated
    $215,000
    From this org
    $215,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $215,000
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $215,000

  • TIMOTHY J FREEMAN

    CHIEF DEVELOPMENT OFFICER

    Total calculated
    $220,000
    From this org
    $220,000
    From related orgs
    $0
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $220,000
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $220,000

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 — 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
    $8,678,380
    Expenses
    $8,239,349
    Contributions
    $7,938,233
    Grants paid
    $5,375,683
  • 2024
    Revenue
    $9,307,309
    Expenses
    $11,731,465
    Contributions
    $8,679,173
    Grants paid
    $9,350,537
  • 2023
    Revenue
    $8,523,815
    Expenses
    $12,338,304
    Contributions
    $8,080,684
    Grants paid
    $9,938,988
  • 2022
    Revenue
    $7,097,993
    Expenses
    $4,042,165
    Contributions
    $7,028,813
    Grants paid
    $2,073,337

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.

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 10 September 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.