Williams Syndrome Association
TO ADVANCE THE INTERESTS OF ALL INDIVIDUALS WITH WILLIAMS SYNDROME THROUGHOUT THEIR LIFESPAN BY PROVIDING PROGRAMMING AND RESOURCES, SUPPORTING RESEARCH, PROMOTING PARTNERSHIPS AND CONNECTIONS, AND ENSURING THAT THE INFRASTRUCTURE OF THE ORGANIZATION HAS THE CAPACITY TO LEAD OUR COMMUNITY TOWARD ITS GOALS.
Key facts about Williams Syndrome Association
- EIN
- 22-3305007
- Latest 990 filing
- Form 990-PF, 2024
- Total assets
- $2,831,149
Data from IRS Form 990-PF, 2024; updated September 2026.
How Williams Syndrome Association gives
- Giving grew 155% from 2020 to 2023. Method
From the foundation's IRS Form 990-PF filings. Methodology.
Next steps with Williams Syndrome Association
- How to evaluate Williams Syndrome Association as a funder
Our grant prospecting guide: read the 990-PF, check fit, and decide whether to apply.
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Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$2.8M
-0.4% YoY
Revenue
$2.0M
+17.1% YoY
Net Investment Income
$77K
-221.4% YoY
Expenses
$2.1M
+10.4% YoY
About Williams Syndrome Association
Based on IRS filings
Williams Syndrome Association is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Newark, NJ. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $2.8M in total assets. Net investment income was $77K.
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 | $2,831,149 | $2,841,757 | $2,892,153 |
| Revenue | $2,016,743 | $1,721,772 | $2,421,502 |
| Expenses | $2,143,132 | $1,940,371 | $2,351,418 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $76,521 | $-63,057 | $57,546 |
| 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 0 recipients in 2024
Grant Size Distribution
8 grants across all recorded years
Open Grants
1 open opportunity from Williams Syndrome Association
Giving History
Grant recipients and amounts by year
No grants recorded for 2024.
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 IRS filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| Bill Palmer | President | 5 | — |
| Meredith Greene | Treasurer | 5 | — |
| Janetricks Chebukati Okeyo | Secretary | 5 | — |
| Gianna Morello | Trustee | 1 | — |
| Kelly Wei | Trustee | 1 | — |
| Brendan Lemieux | Trustee | 1 | — |
| Ellen Hoch | Trustee | 1 | — |
| Clancey Hopper | Trustee | 1 | — |
| Amy Nussbaum | Trustee | 1 | — |
| Rebekah Pagis | Vice President | 5 | — |
| Danielle Shockey | Trustee | 1 | — |
| Ben Samelson-Jones | Trustee | 1 | — |
| Aaron Lombard | Trustee | 1 | — |
| Marie Gleason | Trustee | 1 | — |
| Lisette Engel | Trustee | 1 | — |
| Mary Van Haneghan | Executive Director Through JUL'24 | 40 | $112,811 |
| Sarah Schaefer | Executive Director as of JUL'24 | 40 | $145,000 |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Williams Syndrome Association?
Williams Syndrome Association is a nonprofit organization focused on Diseases, Disorders & Medical Disciplines, based in Newark, NJ. It holds $2.8M in total assets as of 2024.
How large is Williams Syndrome Association?
As of 2024, Williams Syndrome Association holds $2.8M in total assets with $2.0M in annual revenue.
Where does Williams Syndrome Association operate?
Williams Syndrome Association has awarded grants in Indiana, Kentucky, Massachusetts, New York, Wisconsin.
What is Williams Syndrome Association's EIN?
Williams Syndrome Association's EIN (Employer Identification Number) is 22-3305007. IRS Form 990 filing data is available on this page for 2020–2024.
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Browse active grant opportunities in Williams Syndrome Association's focus areas in our free grants database
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Data last updated September 2026. Sourced from IRS Form 990-PF filings.