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Nonprofiteer
← INTERNATIONAL RETT SYNDROME FOUNDATION

Form 990 for tax year 2022

Filed by INTERNATIONAL RETT SYNDROME FOUNDATION.

Totals

Total revenue
$3,669,308
Total expenses
$5,494,227
Contributions and grants received
$3,581,751
Grants paid
$1,969,729
Program service revenue
$310,152
Investment income
-$108,882
Other revenue
-$113,713
Total assets, end of year
$6,438,774
Total liabilities, end of year
$1,972,873
Net assets or fund balances, end of year
$4,465,901
Program services expenses (Part IX)
$4,653,233
Management and general expenses
$325,964
Fundraising expenses
$515,030
Program service expenses (Part III)
$4,653,233

Program services were 84.7% 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

    $343,046

  • 1f · All other contributions, gifts and grants

    $3,238,705

  • 2a · Program service revenue: Conference Income

    total $310,152 · related or exempt $310,152

  • 3 · Investment income

    total $74,911 · excluded $74,911

  • 7a · Gross sales of assets other than inventory

    securities $2,589,716

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

    securities $2,773,509

  • 7c · Gain or loss

    securities -$183,793

  • 7d · Net gain or loss

    total -$183,793 · excluded -$183,793

  • 8a · Fundraising events: gross income

    $0

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

    $343,046

  • 8b · Fundraising events: direct expenses

    $126,309

  • 8c · Net income from fundraising events

    total -$126,309 · excluded -$126,309

  • 10a · Gross sales of inventory

    $5,325

  • 10b · Cost of goods sold

    $1,151

  • 10c · Net income from sales of inventory

    total $4,174 · excluded $4,174

  • 11a · Other revenue: Misc Income

    total $5,555 · excluded $5,555

  • 11b · Other revenue: Refunded grants

    total $2,867 · excluded $2,867

  • 11e · Other revenue, total

    $8,422

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,471,215 · program services $1,471,215

  • 3 · Grants to foreign organizations and individuals

    total $498,514 · program services $498,514

  • 5 · Compensation of officers, directors and key employees

    total $429,937 · program services $363,433 · management and general $49,877 · fundraising $16,627

  • 7 · Other salaries and wages

    total $655,580 · program services $491,312 · management and general $83,664 · fundraising $80,604

  • 8 · Pension plan contributions

    total $13,796 · program services $10,864 · management and general $2,932

  • 9 · Other employee benefits

    total $16,000 · program services $12,652 · management and general $1,937 · fundraising $1,411

  • 10 · Payroll taxes

    total $78,541 · program services $61,848 · management and general $9,747 · fundraising $6,946

  • 11b · Fees: legal

    total $5,354 · management and general $5,354

  • 11c · Fees: accounting

    total $33,536 · management and general $33,536

  • 11f · Fees: investment management

    total $27,258 · management and general $27,258

  • 11g · Fees: other

    total $474,096 · program services $348,545 · management and general $27,143 · fundraising $98,408

  • 13 · Office expenses

    total $94,497 · program services $62,936 · management and general $12,929 · fundraising $18,632

  • 14 · Information technology

    total $225,772 · program services $141,357 · management and general $20,085 · fundraising $64,330

  • 16 · Occupancy

    total $10,690 · management and general $10,690

  • 17 · Travel

    total $486,383 · program services $471,319 · management and general $14,807 · fundraising $257

  • 23 · Insurance

    total $3,897 · management and general $3,897

  • 24a · Other expenses: Direct Program Costs

    total $705,441 · program services $705,441

  • 24b · Other expenses: Other event costs

    total $167,484 · fundraising $167,484

  • 24c · Other expenses: Miscellaneous

    total $96,236 · program services $13,797 · management and general $22,108 · fundraising $60,331

Balance sheet

Part X, book values.

  • 2 · Savings and temporary cash investments

    beginning of year $3,399,395 · end of year $2,298,985

  • 3 · Pledges and grants receivable

    beginning of year $274,935 · end of year $168,369

  • 9 · Prepaid expenses and deferred charges

    beginning of year $9,946 · end of year $16,896

  • 11 · Investments: publicly traded securities

    beginning of year $3,705,611 · end of year $3,872,292

  • 15 · Other assets

    beginning of year $26,619 · end of year $82,232

  • 17 · Accounts payable and accrued expenses

    beginning of year $250,476 · end of year $193,216

  • 18 · Grants payable

    beginning of year $1,135,511 · end of year $1,718,223

  • 25 · Other liabilities

    beginning of year $0 · end of year $61,434

  • 27 · Net assets without donor restrictions

    beginning of year $4,360,641 · end of year $3,238,822

  • 28 · Net assets with donor restrictions

    beginning of year $1,669,878 · end of year $1,227,079

Mission and programs · 2022

Mission

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

Activities or mission (Part I)

To fund research 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 and neuro-habilitation research 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 work to expand access to high quality treatments and care in our support of the Natural History Study, and by sponsoring a national learning collaborative geared toward definition and spread of evidence-based care of patients with Rett syndrome.

    Expenses $3,667,432 · Grants $1,969,729 · Revenue $310,152

  • 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 $985,801

As filed on the 2022 return.

Listed in Part VII

  • Steve Tomes

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Beth Farnum

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • William Babiarz

    Board Chair

    Total calculated
    $0
    Hours/week
    1

  • 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

    Vice Chairman

    Total calculated
    $0
    Hours/week
    0.5

  • Mitch Bleske

    Treasurer

    Total calculated
    $0
    Hours/week
    0.5

  • Christian McMahan

    Secretary

    Total calculated
    $0
    Hours/week
    0.5

  • 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

    Trustee

    Total calculated
    $0
    Hours/week
    0.5

  • Melissa Kennedy

    Executive Director

    Total calculated
    $166,256
    From this org
    $165,981
    From related orgs
    $0
    Other
    $275
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $165,981
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $275
    Filer's total
    $166,256

  • Dominique Pichard

    Chief Science Officer

    Total calculated
    $263,680
    From this org
    $263,680
    From related orgs
    $0
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $263,680
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $263,680

  • Timothy Frank

    Chief Marketing & Developm

    Total calculated
    $119,144
    From this org
    $118,218
    From related orgs
    $0
    Other
    $926
    Hours/week
    50

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 · Independent compensation consultant
  • 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
2022
Filed
11 July 2023
IRS schema version
2022v5.0
Source object
202341959349300104

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