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Nonprofiteer
← INTERNATIONAL RETT SYNDROME FOUNDATION

Form 990 for tax year 2024

Filed by INTERNATIONAL RETT SYNDROME FOUNDATION.

Totals

Total revenue
$4,813,748
Total expenses
$5,531,022
Contributions and grants received
$3,808,219
Grants paid
$1,856,999
Program service revenue
$334,015
Investment income
$261,285
Other revenue
$410,229
Total assets, end of year
$5,325,567
Total liabilities, end of year
$338,142
Net assets or fund balances, end of year
$4,987,425
Program services expenses (Part IX)
$4,761,006
Management and general expenses
$341,664
Fundraising expenses
$428,352
Program service expenses (Part III)
$4,761,006

Program services were 86.1% 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

    $1,198,216

  • 1f · All other contributions, gifts and grants

    $2,610,003

  • 1g · Noncash contributions included above

    $131,317

  • 2a · Program service revenue: Conference Income

    total $200,291 · related or exempt $200,291

  • 2b · Program service revenue: Service Revenue

    total $133,724 · related or exempt $133,724

  • 3 · Investment income

    total $118,142 · excluded $118,142

  • 7a · Gross sales of assets other than inventory

    securities $3,779,144

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

    securities $3,636,001

  • 7c · Gain or loss

    securities $143,143

  • 7d · Net gain or loss

    total $143,143 · excluded $143,143

  • 8a · Fundraising events: gross income

    $691,356

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

    $1,198,216

  • 8b · Fundraising events: direct expenses

    $281,127

  • 8c · Net income from fundraising events

    total $410,229 · excluded $410,229

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,678,482 · program services $1,678,482

  • 3 · Grants to foreign organizations and individuals

    total $178,517 · program services $178,517

  • 5 · Compensation of officers, directors and key employees

    total $194,427 · program services $136,099 · management and general $29,164 · fundraising $29,164

  • 7 · Other salaries and wages

    total $966,531 · program services $724,341 · management and general $121,077 · fundraising $121,113

  • 8 · Pension plan contributions

    total $20,980 · program services $15,551 · management and general $5,429

  • 9 · Other employee benefits

    total $15,610 · program services $11,665 · management and general $2,013 · fundraising $1,932

  • 10 · Payroll taxes

    total $90,990 · program services $67,444 · management and general $11,981 · fundraising $11,565

  • 11b · Fees: legal

    total $2,589 · management and general $2,589

  • 11c · Fees: accounting

    total $86,530 · management and general $86,530

  • 11f · Fees: investment management

    total $28,619 · management and general $28,619

  • 11g · Fees: other

    total $92,838 · program services $82,572 · fundraising $10,266

  • 13 · Office expenses

    total $33,930 · program services $25,557 · management and general $4,117 · fundraising $4,256

  • 14 · Information technology

    total $291,816 · program services $198,410 · management and general $10,695 · fundraising $82,711

  • 16 · Occupancy

    total $29,485 · program services $22,739 · management and general $3,202 · fundraising $3,544

  • 17 · Travel

    total $776,379 · program services $690,145 · management and general $16,127 · fundraising $70,107

  • 23 · Insurance

    total $20,437 · program services $15,566 · management and general $2,502 · fundraising $2,369

  • 24a · Other expenses: Direct Program Costs

    total $845,928 · program services $836,192 · management and general $4,656 · fundraising $5,080

  • 24b · Other expenses: Bank and other fees

    total $92,181 · program services $6,965 · management and general $3,964 · fundraising $81,252

  • 24c · Other expenses: Human Resources and Oth

    total $70,720 · program services $59,513 · management and general $8,500 · fundraising $2,707

  • 24d · Other expenses: Miscellaneous

    total $14,033 · program services $11,248 · management and general $499 · fundraising $2,286

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $2,205,423 · end of year $2,178,126

  • 3 · Pledges and grants receivable

    beginning of year $169,301

  • 4 · Accounts receivable

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

  • 9 · Prepaid expenses and deferred charges

    beginning of year $55,175 · end of year $97,701

  • 11 · Investments: publicly traded securities

    beginning of year $3,762,763 · end of year $2,941,277

  • 15 · Other assets

    beginning of year $70,743 · end of year $58,463

  • 17 · Accounts payable and accrued expenses

    beginning of year $204,945 · end of year $251,044

  • 18 · Grants payable

    beginning of year $124,681 · end of year $50,000

  • 25 · Other liabilities

    beginning of year $49,589 · end of year $37,098

  • 27 · Net assets without donor restrictions

    beginning of year $4,582,266 · end of year $3,780,033

  • 28 · Net assets with donor restrictions

    beginning of year $1,301,924 · end of year $1,207,392

Mission and programs · 2024

Mission

To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.

Activities or mission (Part I)

To fund reseach aimed at potential cures for Rett syndrome and to empower families through education.

  • Our commitment to finding treatments and a cure for Rett syndrome compels us to advance cutting edge research. Through our research programs we fund basic, translational grants throughout the world. We fund post-doctoral researchers, host science symposia to allow for discussions and networking of the world's Rett experts. We fund compound development directly through financial support of high throughput screening systems as well as financially supporting clinical trials. We actively support a clinical research network that develops care guidelines and contributes to a data registry that builds upon the NHS funded Natural History Study, and aims to continue to deepen our understanding of Rett syndrome and support drug development.

    Expenses $3,676,545 · Grants $1,856,999 · Revenue $200,291

  • We empower families through our robust educational programming, consisting of free monthly webinars covering health care topics of interest to families, as well as 4 in-person regional education days. We provide 24/7/365 access to 2 staff members who are devoted to family engagement. We provide educational materials for families, caregivers, schools and therapists. We advocate to federal officials, keeping Rett syndrome on the list of funding priorities. We work with industry in the design of clinical trials, ensuring the clinical trial environment is family centered. We support a network of clinics in North America that is building guidelines for clinical care, making those guidelines available to families as they work with their child's care team, ensuring they are receiving appropriate care.

    Expenses $1,084,461 · Revenue $133,724

As filed on the 2024 return.

Listed in Part VII

  • Jospeh Horrigan MD

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Lisa Monteggia PhD

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • David Pass PharmD

    Chairman

    Total calculated
    $0
    Hours/week
    1

  • Mitch Bleske

    Treasurer

    Total calculated
    $0
    Hours/week
    1

  • Gordon Rich

    Founding Seat - Non Voting

    Total calculated
    $0
    Hours/week
    0.5

  • Alan Shukovsky

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Leslie Mehta Esq

    Interim Chief Executive Officer

    Total calculated
    $5,208
    From this org
    $5,208
    From related orgs
    $0
    Other
    $0
    Hours/week
    0.5

  • Mary Forrest Engel

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Steve Wood

    Vice Chairman

    Total calculated
    $0
    Hours/week
    0.5

  • Laura Stoppel PhD

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Parthy Evans

    Trustee - Start 07/24

    Total calculated
    $0
    Hours/week
    0.5

  • Steve Marconi CPA

    Trustee - Start 07/24

    Total calculated
    $0
    Hours/week
    0.5

  • Melissa Kennedy - Exit 1224

    Chief Executive Officer

    Total calculated
    $189,219
    From this org
    $186,940
    From related orgs
    $0
    Other
    $2,279
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $186,940
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $2,279
    Filer's total
    $189,219

  • Nupur Garg

    VP of Research

    Total calculated
    $194,684
    From this org
    $187,300
    From related orgs
    $0
    Other
    $7,384
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $187,300
    Bonus
    $0
    Other
    $0
    Deferred
    $7,384
    Nontaxable benefits
    $0
    Filer's total
    $194,684

  • Timothy Frank

    Development Director

    Total calculated
    $118,730
    From this org
    $116,466
    From related orgs
    $0
    Other
    $2,264
    Hours/week
    40

  • Meghan Cordeiro

    Marketing & Communication Director

    Total calculated
    $119,542
    From this org
    $113,308
    From related orgs
    $0
    Other
    $6,234
    Hours/week
    40

  • Drew Jones

    VP of Clinical Development

    Total calculated
    $109,815
    From this org
    $108,976
    From related orgs
    $0
    Other
    $839
    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 · Form 990 of other organizations
  • 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
2024
Filed
30 July 2025
IRS schema version
2024v5.2
Source object
202542129349301564

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