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← INTERNATIONAL RETT SYNDROME FOUNDATION

Form 990 for tax year 2025

Filed by INTERNATIONAL RETT SYNDROME FOUNDATION.

Totals

Total revenue
$4,265,935
Total expenses
$5,190,108
Contributions and grants received
$3,822,542
Grants paid
$1,611,176
Program service revenue
$323,344
Investment income
$187,696
Other revenue
-$67,647
Total assets, end of year
$4,707,103
Total liabilities, end of year
$307,411
Net assets or fund balances, end of year
$4,399,692
Program services expenses (Part IX)
$4,168,957
Management and general expenses
$443,727
Fundraising expenses
$577,424
Program service expenses (Part III)
$4,168,957

Program services were 80.3% 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.

  • 1c · Fundraising events

    $1,142,381

  • 1f · All other contributions, gifts and grants

    $2,680,161

  • 1g · Noncash contributions included above

    $68,080

  • 2a · Program service revenue: CONFERENCE INCOME

    total $182,691 · related or exempt $182,691

  • 2b · Program service revenue: SERVICE REVENUE

    total $140,653 · related or exempt $140,653

  • 2f · All other program service revenue

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 3 · Investment income

    total $129,611 · excluded $129,611

  • 6c · Rental income or loss

    real property $0 · personal property $0

  • 7a · Gross sales of assets other than inventory

    securities $567,376

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

    securities $509,291

  • 7c · Gain or loss

    securities $58,085 · other assets $0

  • 7d · Net gain or loss

    total $58,085 · excluded $58,085

  • 8a · Fundraising events: gross income

    $223,509

  • 8a · Fundraising events: contributions included on line 1c

    $1,142,381

  • 8b · Fundraising events: direct expenses

    $291,156

  • 8c · Net income from fundraising events

    total -$67,647 · excluded -$67,647

  • 11d · All other revenue

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 11e · Other revenue, total

    $0

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,377,096 · program services $1,377,096

  • 3 · Grants to foreign organizations and individuals

    total $234,080 · program services $234,080

  • 5 · Compensation of officers, directors and key employees

    total $267,354 · program services $181,235 · management and general $40,641 · fundraising $45,478

  • 7 · Other salaries and wages

    total $1,008,278 · program services $683,491 · management and general $146,367 · fundraising $178,420

  • 8 · Pension plan contributions

    total $21,827 · program services $14,796 · management and general $7,031

  • 9 · Other employee benefits

    total $18,369 · program services $12,452 · management and general $2,747 · fundraising $3,170

  • 10 · Payroll taxes

    total $99,620 · program services $67,530 · management and general $14,899 · fundraising $17,191

  • 11b · Fees: legal

    total $175 · management and general $175

  • 11c · Fees: accounting

    total $101,877 · management and general $101,877

  • 11f · Fees: investment management

    total $26,441 · management and general $26,441

  • 11g · Fees: other

    total $223,149 · program services $154,944 · management and general $14,510 · fundraising $53,695

  • 13 · Office expenses

    total $44,661 · program services $31,299 · management and general $5,707 · fundraising $7,655

  • 14 · Information technology

    total $401,295 · program services $310,369 · management and general $6,095 · fundraising $84,831

  • 16 · Occupancy

    total $28,318 · program services $20,505 · management and general $3,541 · fundraising $4,272

  • 17 · Travel

    total $167,014 · program services $140,914 · management and general $3,804 · fundraising $22,296

  • 23 · Insurance

    total $36,087 · program services $23,156 · management and general $7,969 · fundraising $4,962

  • 24a · Other expenses: OTHER DIRECT PROGRAM COST

    total $583,215 · program services $583,215

  • 24b · Other expenses: OTHER EVENTS

    total $317,976 · program services $316,627 · management and general $1,349

  • 24c · Other expenses: BANK AND OTHER FEES

    total $96,728 · program services $1 · management and general $8,120 · fundraising $88,607

  • 24d · Other expenses: MISCELLANEOUS

    total $82,222 · program services $15,605 · management and general $399 · fundraising $66,218

  • 24e · All other expenses

    total $54,326 · program services $1,642 · management and general $52,055 · fundraising $629

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $2,178,126 · end of year $980,594

  • 4 · Accounts receivable

    beginning of year $50,000 · end of year $0

  • 5 · Loans and receivables from officers and key people

    beginning of year $0 · end of year $0

  • 6 · Loans and receivables from disqualified persons

    beginning of year $0 · end of year $0

  • 9 · Prepaid expenses and deferred charges

    beginning of year $97,701 · end of year $99,380

  • 10a · Land, buildings and equipment: cost or other basis

    $0

  • 10b · Land, buildings and equipment: accumulated depreciation

    $0

  • 10c · Land, buildings and equipment, net

    beginning of year $0 · end of year $0

  • 11 · Investments: publicly traded securities

    beginning of year $2,941,277 · end of year $3,579,036

  • 12 · Investments: other securities

    beginning of year $0

  • 13 · Investments: program-related

    beginning of year $0

  • 15 · Other assets

    beginning of year $58,463 · end of year $48,093

  • 17 · Accounts payable and accrued expenses

    beginning of year $155,482 · end of year $139,818

  • 18 · Grants payable

    beginning of year $50,000 · end of year $68,750

  • 19 · Deferred revenue

    beginning of year $95,562 · end of year $74,908

  • 22 · Loans and payables to officers and key people

    beginning of year $0 · end of year $0

  • 25 · Other liabilities

    beginning of year $37,098 · end of year $23,935

  • 27 · Net assets without donor restrictions

    beginning of year $3,780,033 · end of year $3,092,523

  • 28 · Net assets with donor restrictions

    beginning of year $1,207,392 · end of year $1,307,169

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.

Listed in Part VII

  • 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.

Schedule J

Answered yes

  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 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

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

Provenance

Return type
form_990
Tax year
2025
Filed
28 August 2026
IRS schema version
2025v4.2
Source object
202632409349301243

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