Williams Syndrome Association Inc logo

Williams Syndrome Association Inc

Public charity · Grantmaker Newark, NJ EIN: 22-3305007 Website

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 Inc

EIN
22-3305007
Latest 990 filing
Form 990, 2024
Total assets
$2,831,149

Data from IRS Form 990, 2024; updated September 2026.

Financial Overview

From 2024 IRS Form 990 · 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

How Williams Syndrome Association Inc gives

  • Giving grew 155% from 2020 to 2023. Method

From the foundation's IRS Form 990 filings. Methodology.

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.

Open Grants

1 open opportunity from Williams Syndrome Association Inc

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

6states

Cities

BostonLouisvilleNew YorkEast LansingMilwaukeeWest Lafayette

Giving Over Time

Total grant dollars and number of grants per year

$0$200K$400K$600K$800K3 grants2019 1 grant2020 2 grants2021 4 grants2022 1 grant2023 0 grants2024

From 2019 to 2023, annual grant giving ranged from $50K (2020) to $753K (2019). In 2023 it made 1 grant totaling $127K.

Grant Insights

How this funder distributes its grants

Grant Size Distribution

8 grants across all recorded years

2<$50K1$50–100K4$100–250K1$250–500K$500K–1M$1–5M$5M+

The most common grant size was in the $100–250K range: 4 grants of 8 (50%).

Giving History

Grant recipients and amounts by year

No grants recorded for 2024.

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Net Investment Income
$0$1M$2M$3M2019 2020 2021 2022 2023 2024
Metric202420232022
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
Net Investment Income$76,521$-63,057$57,546

Data update history

When this profile's IRS filing data changed on Grantable

  1. Added Form 990 for fiscal year 2019 (received by the IRS July 7, 2020)
  2. Updated Form 990 for fiscal year 2020 (received by the IRS July 27, 2021)
  3. Updated Form 990 for fiscal year 2021 (received by the IRS June 27, 2022)
  4. Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
  5. Updated Form 990 for fiscal year 2023 (received by the IRS November 15, 2024)
  6. IRS filings on file for fiscal years 2020–2024

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

Sarah Schaefer — Executive Director as of JUL'24: $145KSarah SchaeferExecutive Director as of JUL'24$145KMary Van Haneghan — Executive Director Through JUL'24: $113KMary Van HaneghanExecutive Director Through…$113K

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.

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