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.
International Foundation For CDKL5 Research at a glance
In short: International Foundation For CDKL5 Research gave $149K across 4 grants in 2024 (avg $37K), top state Pennsylvania. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $149,274
- -22.6% vs 2023
- Grants made (2024)
- 4
- -20.0% vs 2023
- Average grant
- $37,319
- -3.3% vs 2023
- Median grant
- $40,000
- Total assets
- $976,798
- +28.3% vs 2023
- Primary geography
- Pennsylvania (42% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
Who International Foundation For CDKL5 Research funds
How this funder distributes its grants
Top Recipients
Top 4 recipients in 2024
The largest 2024 recipient was University of Oregon ($56K). Together the top 4 received $149K.
Grant Size Distribution
26 grants across all recorded years
The most common grant size was under $50K: 12 grants of 26 (46%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2024 grant dollars across all 4 itemized grants.
States
Cities
How International Foundation For CDKL5 Research gives
- Giving fell 48% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $149K (2024) to $514K (2022). In 2024 it made 4 grants totaling $149K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Oregon Eugene, OR | Research | $55,874 |
| Children's Hospital Philadelphia Philadelphia, PA | Research | $50,000 |
| Washington University School of Medicine Saint Louis, MO | Research | $30,000 |
| Orphan Disease Center at University of Pennsylvania Philadelphia, PA | Research | $13,400 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $976,798 | $716,340 | $357,011 | $149,274 | 4 | $3,677 |
| 2023 | $761,142 | $639,182 | $414,598 | $192,884 | 5 | $3,044 |
| 2022 | $631,046 | $606,589 | $725,710 | $514,162 | 6 | $574 |
| 2021 | $544,139 | $678,047 | $487,865 | $284,491 | 6 | $13 |
| 2020 | $415,038 | $635,334 | $699,706 | $439,819 | 5 | $931 |
About International Foundation For CDKL5 Research
Based on IRS filings
International Foundation For CDKL5 Research is a public charity, 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
Leadership & Key People
Officers and directors from IRS filings
International Foundation For CDKL5 Research is led by Karen Utley, President on every filing since 2020; none of the 8 officers listed in 2024 report compensation.
Officers on the 2024 filing
Karen Utley
President
On filings since 2020
35 hrs/week
No compensation reported
Garrett Decker
Director
On filings since 2020
1 hr/week
No compensation reported
Marissa Bishop
Director
On filings since 2020
1 hr/week
No compensation reported
Miriam Churgin
Director
New on the 2024 filing
1 hr/week
No compensation reported
Amanda Jaksha
Treasurer
On filings since 2020
15 hrs/week
No compensation reported
Melissa Ralston
Board Member Emeritus
On filings since 2020
1 hr/week
No compensation reported
Paul Miller
Secretary
On filings since 2020
15 hrs/week
No compensation reported
Rick Upp
Vice President
On filings since 2020
15 hrs/week
No compensation reported
Former officers (2)
- Former: Miriam Blase (2020–2023) — Director
- Former: Kristin Kozera (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about International Foundation For CDKL5 Research
How much does International Foundation For CDKL5 Research give each year?
International Foundation For CDKL5 Research gave $149K across 4 grants in 2024, according to its 2024 IRS Form 990. In 2023 it gave $193K across 5 grants.
What is International Foundation For CDKL5 Research's typical grant size?
International Foundation For CDKL5 Research's median grant in 2024 was $40,000, and its average grant was $37,319, across 4 grants on its 2024 IRS Form 990.
Where does International Foundation For CDKL5 Research give grants?
International Foundation For CDKL5 Research's top state is Pennsylvania, with 42% of the grant dollars itemized on its 2024 IRS Form 990. The next largest states were Oregon (37%) and Missouri (20%). The most frequent recipient cities were Philadelphia, PA (2 grants).
Does International Foundation For CDKL5 Research give general operating support?
Not in 2024: none of the 4 grants with a stated purpose on International Foundation For CDKL5 Research's 2024 IRS Form 990 were described as general or operating support. Recurring purposes include "Research" (4 grants).
How large is International Foundation For CDKL5 Research?
International Foundation For CDKL5 Research reported $977K in total assets on its 2024 IRS Form 990. Its revenue that year was $716K.
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.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 8, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 9, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 10, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS October 23, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS October 19, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work International Foundation For CDKL5 Research funds
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