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← INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH

Form 990 for tax year 2024

Filed by INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH.

Totals

Total revenue
$716,340
Total expenses
$357,011
Contributions and grants received
$712,663
Grants paid
$120,515
Program service revenue
$0
Investment income
$3,677
Other revenue
$0
Total assets, end of year
$976,798
Total liabilities, end of year
$12,536
Net assets or fund balances, end of year
$964,262
Program services expenses (Part IX)
$313,492
Management and general expenses
$40,178
Fundraising expenses
$3,341
Program service expenses (Part III)
$313,492

Program services were 87.8% 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

    $54,704

  • 1f · All other contributions, gifts and grants

    $657,959

  • 1g · Noncash contributions included above

    $42,544

  • 3 · Investment income

    total $3,677 · unrelated business $0 · excluded $3,677

  • 8a · Fundraising events: gross income

    $1,688

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

    $54,704

  • 8b · Fundraising events: direct expenses

    $1,688

  • 8c · Net income from fundraising events

    total $0 · unrelated business $0 · excluded $0

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $120,515 · program services $120,515

  • 11c · Fees: accounting

    total $1,624 · program services $0 · management and general $1,624 · fundraising $0

  • 11g · Fees: other

    total $56,666 · program services $50,999 · management and general $5,667 · fundraising $0

  • 12 · Advertising and promotion

    total $336 · program services $0 · management and general $302 · fundraising $34

  • 13 · Office expenses

    total $1,625 · program services $0 · management and general $1,625 · fundraising $0

  • 17 · Travel

    total $1,170 · program services $1,170 · management and general $0 · fundraising $0

  • 22 · Depreciation, depletion and amortization

    total $7,334 · program services $3,667 · management and general $3,667 · fundraising $0

  • 23 · Insurance

    total $2,942 · program services $0 · management and general $2,942 · fundraising $0

  • 24a · Other expenses: Business Registration

    total $8,044 · program services $0 · management and general $8,044 · fundraising $0

  • 24b · Other expenses: Bank Charges

    total $7,392 · program services $0 · management and general $7,392 · fundraising $0

  • 24e · All other expenses

    total $149,363 · program services $137,141 · management and general $8,915 · fundraising $3,307

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $284,614 · end of year $387,550

  • 2 · Savings and temporary cash investments

    beginning of year $289,364 · end of year $328,288

  • 9 · Prepaid expenses and deferred charges

    beginning of year $3,399 · end of year $4,618

  • 11 · Investments: publicly traded securities

    beginning of year $165,432 · end of year $245,342

  • 14 · Intangible assets

    beginning of year $18,333 · end of year $11,000

  • 17 · Accounts payable and accrued expenses

    beginning of year $1,432 · end of year $7,200

  • 18 · Grants payable

    beginning of year $194,759 · end of year $5,336

  • 27 · Net assets without donor restrictions

    beginning of year $564,951 · end of year $964,262

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.

Listed in Part VII

  • 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.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
16 October 2025
IRS schema version
2024v5.2
Source object
202542929349300054

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