International Foundation For CDKL5 Research
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.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$977K
+28.3% YoY
Annual Giving
$149K
-22.6% YoY
Grant Count
4
-20.0% YoY
Avg Grant Size
$37K
-3.3% YoY
About International Foundation For CDKL5 Research
Based on IRS filings
International Foundation For CDKL5 Research is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in WADSWORTH, OH. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $977K in total assets. In 2024, it awarded 4 grants totaling $149K. Net investment income was $4K.
Focus Areas
Ready to take the next step with International Foundation For CDKL5 Research?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $976,798 | $761,142 | $631,046 |
| Revenue | $716,340 | $639,182 | $606,589 |
| Expenses | $357,011 | $414,598 | $725,710 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $3,677 | $3,044 | $574 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2024
Grant Size Distribution
26 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include University of Oregon ($55,874), Children's Hospital Philadelphia ($50,000), Washington University School of Medicine ($30,000).
| Recipient | Purpose | Amount |
|---|---|---|
| Children's Hospital Philadelphia Philadelphia, PA | Research | $50,000 |
| Washington University School of Medicine Saint Louis, MO | Research | $30,000 |
| University of Oregon Eugene, OR | Research | $55,874 |
| Orphan Disease Center at University of Pennsylvania Philadelphia, PA | Research | $13,400 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Karen Utley | President | 35 | — |
| Rick Upp | Vice President | 15 | — |
| Paul Miller | Secretary | 15 | — |
| Amanda Jaksha | Treasurer | 15 | — |
| Miriam Churgin | Director | 1 | — |
| Garrett Decker | Director | 1 | — |
| Marissa Bishop | Director | 1 | — |
| Melissa Ralston | Board Member Emeritus | 1 | — |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is International Foundation For CDKL5 Research?
International Foundation For CDKL5 Research is a nonprofit organization focused on Philanthropy, Voluntarism & Grantmaking, based in WADSWORTH, OH. It holds $977K in total assets as of 2024.
How large is International Foundation For CDKL5 Research?
As of 2024, International Foundation For CDKL5 Research holds $977K in total assets with $716K in annual revenue. It awarded 4 grants totaling $149K in 2024.
Where does International Foundation For CDKL5 Research operate?
International Foundation For CDKL5 Research has awarded grants in California, Colorado, Massachusetts, Maryland, Missouri, Nebraska, New York, Oregon, Pennsylvania, Tennessee, Texas.
What size grants does International Foundation For CDKL5 Research award?
In 2024, International Foundation For CDKL5 Research awarded 4 grants totaling $149K — an average of about $37K per grant, based on its IRS Form 990 filings.
What is International Foundation For CDKL5 Research's EIN?
International Foundation For CDKL5 Research's EIN (Employer Identification Number) is 27-0950477. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in International Foundation For CDKL5 Research's focus areas in our free grants database
Related Funders
Similar funders by location and focus area
Cooper Tire Foundation Inc
AKRON, OH
Assets
$71K
Grants
2
Total Given
$67K
Auburn Education Foundation
CONCORD TOWNSHIP, OH
Assets
$352K
Grants
2
Total Given
$214K
Galpin-white Ta
BROOKLYN, OH
Assets
$16K
Grants
1
Total Given
$887
The Cleveland Superior Arts
CLEVELAND, OH
Assets
$5K
Grants
1
Total Given
$251K
Mary E H Rutter Tr Para 28
BROOKLYN, OH
Assets
$401K
Grants
1
Total Given
$26K
Carrie Peska Memorial Scholarship Fund
ANDOVER, OH
Assets
$19K
Grants
1
Total Given
$4K
Data last updated April 2026. Sourced from IRS Form 990-PF filings.
What could you do with International Foundation For CDKL5 Research on Grantable?
- Assess strategic fit with your organization
- Draft a tailored letter of inquiry
- Find open RFPs from this funder
- Monitor for new funding opportunities
Go from researching International Foundation For CDKL5 Research to a real strategy.