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Nonprofiteer
← RETT SYNDROME RESEARCH TRUST INC

Form 990 for tax year 2025

Filed by RETT SYNDROME RESEARCH TRUST INC.

Totals

Total revenue
$8,678,380
Total expenses
$8,239,349
Contributions and grants received
$7,938,233
Grants paid
$5,375,683
Program service revenue
$195,455
Investment income
$544,692
Other revenue
$0
Total assets, end of year
$20,833,981
Total liabilities, end of year
$13,674,873
Net assets or fund balances, end of year
$7,159,108
Program services expenses (Part IX)
$7,367,305
Management and general expenses
$154,105
Fundraising expenses
$717,939
Program service expenses (Part III)
$7,367,305

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

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1f · All other contributions, gifts and grants

    $7,938,233

  • 2a · Program service revenue: LICENSING

    total $130,688 · related or exempt $130,688

  • 2b · Program service revenue: BIOREPOSITORY

    total $64,767 · related or exempt $64,767

  • 3 · Investment income

    total $543,463 · related or exempt $543,463

  • 7a · Gross sales of assets other than inventory

    securities $205,154

  • 7b · Less cost or other basis and sales expenses

    securities $203,925

  • 7c · Gain or loss

    securities $1,229

  • 7d · Net gain or loss

    total $1,229 · related or exempt $1,229

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $5,375,683 · program services $5,375,683

  • 5 · Compensation of officers, directors and key employees

    total $875,000 · program services $633,000 · management and general $59,400 · fundraising $182,600

  • 7 · Other salaries and wages

    total $169,399 · program services $106,673 · management and general $62,660 · fundraising $66

  • 9 · Other employee benefits

    total $71,509 · program services $50,645 · management and general $8,357 · fundraising $12,507

  • 10 · Payroll taxes

    total $71,778 · program services $50,835 · management and general $8,389 · fundraising $12,554

  • 11g · Fees: other

    total $621,735 · program services $599,107 · management and general $5,956 · fundraising $16,672

  • 13 · Office expenses

    total $22,911 · program services $16,226 · management and general $2,679 · fundraising $4,006

  • 16 · Occupancy

    total $4,500 · program services $3,187 · management and general $526 · fundraising $787

  • 23 · Insurance

    total $5,758 · program services $1,920 · management and general $1,919 · fundraising $1,919

  • 24a · Other expenses: FUNDRAISING

    total $472,980 · fundraising $472,980

  • 24b · Other expenses: SCIENTIFIC MEETINGS, TR

    total $269,912 · program services $269,912

  • 24c · Other expenses: RESEARCH COSTS

    total $129,157 · program services $129,157

  • 24d · Other expenses: MISCELLANEOUS

    total $115,450 · program services $107,115 · management and general $106 · fundraising $8,229

  • 24e · All other expenses

    total $33,577 · program services $23,845 · management and general $4,113 · fundraising $5,619

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $4,317,606 · end of year $16,298,853

  • 2 · Savings and temporary cash investments

    beginning of year $13,681,914

  • 3 · Pledges and grants receivable

    beginning of year $2,357,060 · end of year $2,535,128

  • 14 · Intangible assets

    end of year $2,000,000

  • 17 · Accounts payable and accrued expenses

    beginning of year $103,250 · end of year $23,416

  • 18 · Grants payable

    beginning of year $15,533,252 · end of year $13,651,457

  • 27 · Net assets without donor restrictions

    beginning of year $4,720,078 · end of year $7,159,108

Mission and programs · 2025

Mission

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

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

    Expenses $7,097,393 · Grants $5,375,683 · Revenue $740,147

  • 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.

    Expenses $269,912

  • 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.

  • 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.

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • 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, 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.

Schedule J

Answered yes

  • 3 · Form 990 of other organizations
  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

  • PRE-CLINICAL STUDIES

    $1,100,000

    RETT RESEARCH

  • PROFLUENT

    $1,000,000

    RETT RESEARCH

  • VIRALGEN

    $750,000

    RETT RESEARCH

  • UNIVERSITY OF CALIFORNIA DAVIS

    $474,894

    RNA EDITING

  • JACKSON LABS

    $419,317

    RETT RESEARCH

  • 4BASEBIO

    $350,000

    RETT RESEARCH

  • SHAPE THERAPEUTICS

    $300,000

    RETT RESEARCH

  • EVOX

    $240,000

    RETT RESEARCH

  • DUKE

    $213,610

    RETT RESEARCH

  • RESPLICE

    $130,000

    RETT RESEARCH

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

Provenance

Return type
form_990
Tax year
2025
Filed
15 May 2026
IRS schema version
2025v4.1
Source object
202601359349311400

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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