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INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH

EIN 27-0950477 WADSWORTH, OH

Revenue 2024
$716,340
Expenses 2024
$357,011

Program services were 87.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
T30
Classification
1000
Street
PO BOX 926

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).

Mission and programs · 2024

Mission

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.

  • In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers.

    Expenses $313,492 · Grants $120,515

As filed on the 2024 return.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Karen Utley

    President

    Total calculated
    $0
    Hours/week
    35

  • Rick Upp

    Vice President

    Total calculated
    $0
    Hours/week
    15

  • Paul Miller

    Secretary

    Total calculated
    $0
    Hours/week
    15

  • Amanda Jaksha

    Treasurer

    Total calculated
    $0
    Hours/week
    15

  • Miriam Churgin

    Director

    Total calculated
    $0
    Hours/week
    1

  • Garrett Decker

    Director

    Total calculated
    $0
    Hours/week
    1

  • Marissa Bishop

    Director

    Total calculated
    $0
    Hours/week
    1

  • Melissa Ralston

    Board Member Emeritus

    Total calculated
    $0
    Hours/week
    1

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. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $716,340
    Expenses
    $357,011
    Contributions
    $712,663
    Grants paid
    $120,515
  • 2023
    Revenue
    $639,182
    Expenses
    $414,598
    Contributions
    $630,788
    Grants paid
    $197,884
  • 2022
    Revenue
    $606,589
    Expenses
    $725,710
    Contributions
    $606,015
    Grants paid
    $574,624

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.

Other returns filed

  • 2021 · 990

    Revenue
    $678,047
    Expenses
    $487,865
    Assets (EOY)
    $544,139

  • 2020 · 990

    Revenue
    $635,334
    Expenses
    $699,706
    Assets (EOY)
    $415,038

  • 2019 · 990

    Revenue
    $462,544
    Expenses
    $720,098
    Assets (EOY)
    $329,464

  • 2018 · 990

    Revenue
    $490,009
    Expenses
    $807,652
    Assets (EOY)
    $649,889

  • 2017 · 990

    Revenue
    $327,200
    Expenses
    $260,632
    Assets (EOY)
    $913,861

  • 2016 · 990

    Revenue
    $431,749
    Expenses
    $730,686
    Assets (EOY)
    $806,546

  • 2015 · 990

    Revenue
    $295,067
    Expenses
    $401,032
    Assets (EOY)
    $1,080,678

  • 2014 · 990

    Revenue
    $740,737
    Expenses
    $237,605
    Assets (EOY)
    $1,182,785

  • 2013 · 990

    Revenue
    $296,348
    Expenses
    $151,278
    Assets (EOY)
    $741,346

  • 2012 · 990

    Revenue
    not reported
    Expenses
    $155,758
    Assets (EOY)
    $532,481

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Form 990-N e-Postcard, tax year 2009

Tax period
1 January 2009 to 31 December 2009
Principal officer
Katheryn Elibri Frame
Mailing address
PO Box 926Wadsworth OH 44282
Website
www.CDKL5.com

As filed, from the IRS e-Postcard file of 19 October 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

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 13 October 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.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 26 October 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.