Koolen-De Vries Syndrome Foundation
THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INCLUDE SOCIAL (CONTINUED ON SCHEDULE O) GATHERINGS, PATIENT ADVOCACY SUMMITS, SUPPORTING RESEARCH, AND PROVIDING INFORMATION REGARDING KDVS TO BOTH THE GENERAL POPULATION AND MEDICAL PROFESSIONALS.
Key facts about Koolen-De Vries Syndrome Foundation
- EIN
- 46-3208388
- Latest 990 filing
- Form 990-PF, 2024
- Annual giving (2024)
- $44,500
- Grants made (2024)
- 2
- Average grant
- $22,250
- Median grant
- $22,250
- Total assets
- $573,519
- Primary geography
- Illinois (55% of itemized 2024 grant dollars)
Data from IRS Form 990-PF, 2024; updated September 2026.
Next steps with Koolen-De Vries Syndrome Foundation
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Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$574K
-1.2% YoY
Annual Giving
$45K
-72.1% YoY
Grant Count
2
-50.0% YoY
Avg Grant Size
$22K
-44.2% YoY
About Koolen-De Vries Syndrome Foundation
Based on IRS filings
Koolen-De Vries Syndrome Foundation is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Wilmington, NC. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $574K in total assets. In 2024, it awarded 2 grants totaling $45K. Net investment income was $433.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of all 2 itemized 2024 grant dollars.
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $573,519 | $580,616 | $599,559 |
| Revenue | $263,173 | $305,621 | $237,465 |
| Expenses | $270,270 | $324,564 | $41,563 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $433 | $7 | $7 |
| Distributable Amount | — | — | — |
Data update history
When this profile's IRS filing data changed on Grantable
- IRS filings on file for fiscal years 2020–2024
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 2 recipients in 2024
Grant Size Distribution
6 grants across all recorded years
Open Grants
1 open opportunity from Koolen-De Vries Syndrome Foundation
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest recipients include Cure Epilepsy ($24,500), St Jude ($20,000).
| Recipient | Purpose | Amount |
|---|---|---|
| CURE EPILEPSY Chicago, IL | TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $24,500 |
| ST JUDE Memphis, TN | TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME | $20,000 |
Leadership & Key People
Officers and directors from IRS filings
Koolen-De Vries Syndrome Foundation is led by Ashley Point, President on every filing since 2020; none of the 12 officers listed in 2024 report compensation.
Officers on the 2024 filing
Ashley Point
President
On filings since 2020
10 hrs/week
No compensation reported
Alayna Haynam
Board Member
Vice President → Board Member, 2024
On filings since 2020
1 hr/week
No compensation reported
Kaci Fisher
Board Member
On filings since 2020
5 hrs/week
No compensation reported
Neal Dermerer
Board Member
On filings since 2020
1 hr/week
No compensation reported
Cindy Asbury
Board Member
On filings since 2021
1 hr/week
No compensation reported
Emily Lemke
Board Member
On filings since 2021
2 hrs/week
No compensation reported
Gabriel Stagner
Treasurer
On filings since 2021
5 hrs/week
No compensation reported
Jessica Collier
Board Member
On filings since 2021
5 hrs/week
No compensation reported
Maria Luisa Valentin De Solis
Board Member
On filings since 2022
1 hr/week
No compensation reported
Katie Maher
Board Member
On filings since 2023
2 hrs/week
No compensation reported
Matt Holcombe
Board Member
On filings since 2023
1 hr/week
No compensation reported
Megan Hartwell
Board Member
New on the 2024 filing
2 hrs/week
No compensation reported
Former officers (5)
- Former: Alicia Holcombe (2020) — Board Member
- Former: Andy Speirs (2020) — Treasurer
- Former: Angela Dejong (2020) — Board Member
- Former: Patty Tiberg (2020) — Board Member
- Former: Steven Tiberg (2020) — Board Member
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.
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Koolen-De Vries Syndrome Foundation?
Koolen-De Vries Syndrome Foundation is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Wilmington, NC. It holds $574K in total assets as of 2024.
How large is Koolen-De Vries Syndrome Foundation?
As of 2024, Koolen-De Vries Syndrome Foundation holds $574K in total assets with $263K in annual revenue. It awarded 2 grants totaling $45K in 2024.
Where does Koolen-De Vries Syndrome Foundation operate?
Koolen-De Vries Syndrome Foundation has awarded grants in California, Georgia, Illinois, Tennessee.
What size grants does Koolen-De Vries Syndrome Foundation award?
In 2024, Koolen-De Vries Syndrome Foundation awarded 2 grants totaling $45K — an average of about $22K per grant, based on its IRS Form 990 filings.
What is Koolen-De Vries Syndrome Foundation's EIN?
Koolen-De Vries Syndrome Foundation's EIN (Employer Identification Number) is 46-3208388. IRS Form 990 filing data is available on this page for 2020–2024.
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Data last updated September 2026. Sourced from IRS Form 990-PF filings.