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 gatherings, patient advocacy summits, supporting research, and providing information regarding KDVS to both the general population and medical professionals.
Koolen-De Vries Syndrome Foundation at a glance
- Total assets
- $734,526
- +28.1% vs 2024
- Revenue (2025)
- $381,306
- +44.9% vs 2024
- Net investment income (2025)
- $5,187
- +1097.9% vs 2024
- Expenses (2025)
- $220,301
- -18.5% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Koolen-De Vries Syndrome Foundation
Open Grants
1 open opportunity from Koolen-De Vries Syndrome Foundation
Who Koolen-De Vries Syndrome Foundation funds
How this funder distributes its grants
Grant Size Distribution
6 grants across all recorded years
The most common grant size was under $50K: 4 grants of 6 (67%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $5K (2020) to $159K (2023). In 2024 it made 2 grants totaling $45K.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| 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 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $734,526 | $381,306 | $220,301 | — | — | $5,187 |
| 2024 | $573,519 | $263,173 | $270,270 | $44,500 | 2 | $433 |
| 2023 | $580,616 | $305,621 | $324,564 | $159,372 | 4 | $7 |
| 2022 | $599,559 | $237,465 | $41,563 | — | — | $7 |
| 2021 | $403,657 | $257,578 | $144,163 | $100,300 | Total only | $12 |
| 2020 | $290,242 | $154,424 | $38,198 | $5,158 | Total only | $11 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About Koolen-De Vries Syndrome Foundation
Based on IRS filings
Koolen-De Vries Syndrome Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Wilmington, NC. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $735K in total assets. Net investment income was $5K.
Focus Areas
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 11 officers listed in 2025 report compensation.
Officers on the 2025 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
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
On filings since 2024
2 hrs/week
No compensation reported
Former officers (6)
- Former: Neal Dermerer (2020–2024) — Board Member
- 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, 2020–2025. "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 Koolen-De Vries Syndrome Foundation
How large is Koolen-De Vries Syndrome Foundation?
Koolen-De Vries Syndrome Foundation reported $735K in total assets on its 2025 IRS Form 990. Its revenue that year was $381K.
What is Koolen-De Vries Syndrome Foundation?
Koolen-De Vries Syndrome Foundation is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Wilmington, NC. It holds $735K in total assets as of 2025.
Where does Koolen-De Vries Syndrome Foundation operate?
Koolen-De Vries Syndrome Foundation has awarded grants in California, Georgia, Illinois, Tennessee.
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 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(4)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 14, 2022)
- Added Form 990 for fiscal year 2025 (received by the IRS August 4, 2026)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Koolen-De Vries Syndrome Foundation funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Koolen-De Vries Syndrome Foundation's focus areas in our free grants database
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