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.
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
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 | — | — | — |
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
No grants recorded for .
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| ALAYNA HAYNAM | BOARD MEMBER | 1 | — |
| ASHLEY POINT | PRESIDENT | 10 | — |
| CINDY ASBURY | BOARD MEMBER | 1 | — |
| EMILY LEMKE | BOARD MEMBER | 2 | — |
| GABRIEL STAGNER | TREASURER | 5 | — |
| JESSICA COLLIER | BOARD MEMBER | 5 | — |
| KACI FISHER | BOARD MEMBER | 5 | — |
| NEAL DERMERER | BOARD MEMBER | 1 | — |
| MARIA LUISA VALENTIN DE SOLIS | BOARD MEMBER | 1 | — |
| KATIE MAHER | BOARD MEMBER | 2 | — |
| MATT HOLCOMBE | BOARD MEMBER | 1 | — |
| MEGAN HARTWELL | BOARD MEMBER | 2 | — |
Subject Areas
Focus areas based on grantmaking activity
Related Funders
Similar funders by location and focus area
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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