Williams Syndrome Association Inc
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.
Williams Syndrome Association Inc at a glance
- Total assets
- $2,831,149
- -0.4% vs 2023
- Revenue (2024)
- $2,016,743
- +17.1% vs 2023
- Net investment income (2024)
- $76,521
- -221.4% vs 2023
- Expenses (2024)
- $2,143,132
- +10.4% vs 2023
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to Williams Syndrome Association Inc
Open Grants
1 open opportunity from Williams Syndrome Association Inc
Who Williams Syndrome Association Inc funds
How this funder distributes its grants
Grant Size Distribution
8 grants across all recorded years
The most common grant size was in the $100–250K range: 4 grants of 8 (50%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
How Williams Syndrome Association Inc gives
- Giving grew 155% from 2020 to 2023. 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 2019 to 2023, annual grant giving ranged from $50K (2020) to $753K (2019). In 2023 it made 1 grant totaling $127K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Wisconsin-Milwaukee Milwaukee, WI | Williams Syndrome Research | $127,499 |
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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 | $2,831,149 | $2,016,743 | $2,143,132 | — | — | $76,521 |
| 2023 | $2,841,757 | $1,721,772 | $1,940,371 | $127,499 | 1 | $-63,057 |
| 2022 | $2,892,153 | $2,421,502 | $2,351,418 | $491,484 | 4 | $57,546 |
| 2021 | $3,106,665 | $1,472,394 | $1,309,219 | $369,949 | 2 | $94,012 |
| 2020 | $2,830,051 | $1,646,364 | $1,007,372 | $50,000 | 1 | $110,564 |
| 2019 | $2,349,384 | $1,918,427 | $1,924,976 | $752,500 | 3 | $87,037 |
About Williams Syndrome Association Inc
Based on IRS filings
Williams Syndrome Association Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Newark, NJ. IRS filing data is available from 2019 through 2024. As of 2024, the organization holds $2.8M in total assets. Net investment income was $77K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Williams Syndrome Association Inc is led by Mary Van Haneghan, Executive Director on every filing since 2022; 2 of 17 officers listed in 2024 are compensated.
Officers on the 2024 filing
Mary Van Haneghan
Executive Director
On filings since 2022
40 hrs/week
$83K (2022) → $113K (2024)
Sarah Schaefer
Executive Director
New on the 2024 filing
40 hrs/week
$145K (2024)
Bill Palmer
President
Trustee → President, 2024
On filings since 2022
5 hrs/week
No compensation reported
Clancey Hopper
Trustee
Trustee & Ws A → Trustee, 2021
On filings since 2020
1 hr/week
No compensation reported
Brendan Lemieux
Trustee
On filings since 2021
1 hr/week
No compensation reported
Ellen Hoch
Trustee
On filings since 2021
1 hr/week
No compensation reported
Kelly Wei
Trustee
On filings since 2021
1 hr/week
No compensation reported
Amy Nussbaum
Trustee
On filings since 2022
1 hr/week
No compensation reported
Aaron Lombard
Trustee
On filings since 2023
1 hr/week
No compensation reported
Gianna Morello
Trustee
On filings since 2023
1 hr/week
No compensation reported
Ben Samelson-Jones
Trustee
New on the 2024 filing
1 hr/week
No compensation reported
Danielle Shockey
Trustee
New on the 2024 filing
1 hr/week
No compensation reported
Lisette Engel
Trustee
New on the 2024 filing
1 hr/week
No compensation reported
Marie Gleason
Trustee
New on the 2024 filing
1 hr/week
No compensation reported
Meredith Greene
Treasurer
Vice President → Trustee, 2023
Trustee → Treasurer, 2024
On filings since 2021
5 hrs/week
No compensation reported
Janetricks Chebukati Okeyo
Secretary
Trustee → Secretary, 2024
On filings since 2023
5 hrs/week
No compensation reported
Rebekah Pagis
Vice President
Trustee → Vice President, 2024
On filings since 2023
5 hrs/week
No compensation reported
Former officers (19)
- Former: Cyndra Cole (2019–2023) — President
- Former: Scott Ottenheimer (2019–2023) — Treasurer
- Former: Sarah Giddings (2020–2023) — Vice President of Programs
- Former: Aine Smalley (2022–2023) — Vice President
- Former: Matt Bartow (2022–2023) — Secretary
- Former: Joe Mancini (2023) — Vice President of Advancement
- Former: Melissa Murphy (2019–2022) — Trustee
- Former: Ryan Cordy (2019–2022) — Trustee
- Former: Terry Monkaba (2019–2022) — Executive Director
- Former: Jocelyn Krebs (2019–2021) — Trustee
- Former: Judy Van Handel (2019–2021) — Treasurer
- Former: Marty Levinson (2019–2021) — Trustee
- Former: Matthew Bartow (2019–2021) — Secretary
- Former: Tara Momplaisir (2019–2021) — Trustee
- Former: Laurel Rossi (2019–2020) — Trustee
- Former: Maegan Miller (2019–2020) — Trustee & Ws A
- Former: Marella Holmes (2019–2020) — Trustee
- Former: Griselda Polanco-G (2020) — Trustee
- Former: Alex Streit (2019) — Trustee & Ws A
Data from IRS Form 990 filings, 2019–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $145K, to Sarah Schaefer (Executive Director as of JUL'24). 2 officers or directors reported compensation on that filing.
Frequently asked questions about Williams Syndrome Association Inc
How large is Williams Syndrome Association Inc?
Williams Syndrome Association Inc reported $2.8M in total assets on its 2024 IRS Form 990. Its revenue that year was $2.0M.
What is Williams Syndrome Association Inc?
Williams Syndrome Association Inc is a public charity focused on Diseases, Disorders & Medical Disciplines, based in Newark, NJ. It holds $2.8M in total assets as of 2024.
Where does Williams Syndrome Association Inc operate?
Williams Syndrome Association Inc has awarded grants in Indiana, Kentucky, Massachusetts, Michigan, New York, Wisconsin.
What is Williams Syndrome Association Inc's EIN?
Williams Syndrome Association Inc's EIN (Employer Identification Number) is 22-3305007. IRS Form 990 filing data is available on this page for 2019–2024.
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
- Added Form 990 for fiscal year 2019 (received by the IRS July 7, 2020)
- Updated Form 990 for fiscal year 2020 (received by the IRS July 27, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS June 27, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 15, 2024)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Williams Syndrome Association Inc funds
Diseases, Disorders & Medical Disciplines Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Williams Syndrome Association Inc's focus areas in our free grants database
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Williams Syndrome Association Inc down — hundreds of funders to go?