PLATINUM2024

WILLIAMS SYNDROME ASSOCIATION INC

Extraordinary Gifts/Unique Challenges

aka WSA   |   Newark, NJ   |  www.williams-syndrome.org
GuideStar Charity Check

WILLIAMS SYNDROME ASSOCIATION INC

EIN: 22-3305007


Mission

The Williams Syndrome Association works 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.

Ruling year info

1995

Executive Director

Dr. Mary Van Haneghan

Main address

243 Broadway #9188

Newark, NJ 07104 USA

Show more contact info

EIN

22-3305007

Subject area info

Genetic conditions and birth defects

Human services

Population served info

People with disabilities

NTEE code info

Developmentally Disabled Services/Centers (P82)

Human Service Organizations (P20)

Services to Promote the Independence of Specific Populations (P80)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Tax forms

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Williams Syndrome Association (WSA) works across the US to provide essential support for all individuals with Williams syndrome & their families by addressing their greatest needs including healthcare, education, housing, employment, integration into society, and creation of an inclusive community.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Supports & Services, Ed & Awareness & Research

1- Supports and Services
We provide programs and services (both in-person and remote) in:
• Early intervention
• Education support
• Best practices for age-appropriate interventions
• Transitional services
• Continuing education
• Employment opportunities
• Independent living
• Long-term support
• Bereavement

2 - Awareness and Education
• We increase public awareness, understanding and support
• We provide training and support in patient and family advocacy
• We hold camps, conferences, and biennial international conventions
• We offer national and regional support groups and social gatherings
• We provide scholarships to address barriers to access and socioeconomic inequalities
• We disseminate current and cutting edge medical and educational information

3 - Research
• We disseminate current and cutting edge medical and educational information
• We fund and support research to uncover and mitigate the medical complications of many individuals with WS, including funding the world’s

Population(s) Served
Adults
Children and youth
Ethnic and racial groups
Economically disadvantaged people
Families

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of conferences held

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2022 -convention touched 1220 attendees from the William syndrome community with national & international representation.60+ ed sessions for parents & professionals. 2024 is another conference year!

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To ensure all individuals with Williams syndrome have the support they need throughout their lifespan to live healthy, self-directed, productive and meaningful lives.

Our approach's efficacy is evidenced by our successful initiatives, including national and regional conventions, professional conferences, frequent virtual programs, camps, and 100+ social and annual awareness events for individuals with Williams Syndrome. Our biennial National Convention, attracting 1200 attendees including international participation, offers 60+ educational programs for parents & professionals, specialized programming for children & adults with WS and their siblings, individual-specific consulting, clinical research opportunities, and a resource fair.
We actively support research in medical, educational, behavioral, and social aspects of the syndrome, funding essential medical research where institutional support is scarce. Our collaborations span Boston Children’s Hospital, Johns Hopkins University, Massachusetts General Hospital, the University of Louisville, among others. The Collaborative Registry for Williams Syndrome (CReWS), our initiative, collects clinical data to advance our understanding and develop treatments. We also oversee the national Williams Syndrome Clinical Consortium and Research Network, enabling data sharing across many centers and addressing data bottlenecks common for orphan disease research. Our Young Investigator award ensures a continual pipeline on Williams Syndrome research, encouraging early-career researchers to contribute.
Through the WSA’s efforts, many individuals have been able to live independently, find meaningful work, and access medical care from health care professionals who understand the intricacies of WS. Our goal, however, is to provide that level of support to individuals with WS regardless of their economic, racial, or social environment.

The WSA has grown from a small group of families in 1982 to supporting over 7,000 families worldwide with a $2M annual budget. We've established enduring partnerships with educational, medical, and WS communities, and oversee national medical and research networks.
Direct program expenses are approximately 80% of total expenses demonstrating our commitment to maximizing the direct support we provide. Membership satisfaction data showcases our effectiveness and the value our members place in our services.
The WSA conducts regular surveys of our members and listening sessions to understand the needs of our community and evaluate the success of our programs and resources. Listening sessions in 2022 involved 88 members and caused us to put more emphasis on regional support and communication

Financials

WILLIAMS SYNDROME ASSOCIATION INC
Fiscal year: Jan 01 - Dec 31
Financial documents
2020 2019
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

10.42

Average of 30.73 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

3.3

Average of 3.2 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

17%

Average of 17% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

WILLIAMS SYNDROME ASSOCIATION INC

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

WILLIAMS SYNDROME ASSOCIATION INC

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

WILLIAMS SYNDROME ASSOCIATION INC

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of WILLIAMS SYNDROME ASSOCIATION INC’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$387,249 $151,469 $371,740 $578,640 -$580,431
As % of expenses -21.4% 7.9% 37.1% 44.3% -24.7%
Unrestricted surplus (deficit) after depreciation -$396,181 $142,606 $367,079 $576,008 -$584,555
As % of expenses -21.8% 7.4% 36.4% 44.0% -24.9%
Revenue composition info
Total revenue (unrestricted & restricted) $1,721,623 $1,918,427 $1,646,364 $1,472,394 $2,421,502
Total revenue, % change over prior year 10.8% 11.4% -14.2% -10.6% 64.5%
Program services revenue 22.7% 5.9% 0.7% 3.8% 20.3%
Membership dues 0.3% 0.2% 0.3% 0.3% 0.1%
Investment income 3.6% 3.0% 3.5% 3.3% 2.2%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 63.3% 89.3% 92.3% 89.5% 77.0%
Other revenue 10.2% 1.5% 3.2% 3.1% 0.4%
Expense composition info
Total expenses before depreciation $1,806,733 $1,916,113 $1,002,711 $1,306,587 $2,347,294
Total expenses, % change over prior year -21.2% 6.1% -47.7% 30.3% 79.7%
Personnel 30.1% 37.6% 71.1% 51.2% 37.5%
Professional fees 7.1% 3.6% 3.1% 3.9% 6.5%
Occupancy 2.5% 2.5% 4.6% 2.6% 1.2%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 13.6% 39.3% 5.0% 28.3% 21.2%
All other expenses 46.7% 17.0% 16.1% 13.9% 33.6%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $1,815,665 $1,924,976 $1,007,372 $1,309,219 $2,351,418
One month of savings $150,561 $159,676 $83,559 $108,882 $195,608
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $5,136 $10,046
Total full costs (estimated) $1,966,226 $2,084,652 $1,090,931 $1,423,237 $2,557,072

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 0.3 0.8 4.2 2.9 3.3
Months of cash and investments 13.6 14.3 33.0 26.7 14.3
Months of estimated liquid unrestricted net assets 10.0 10.3 24.1 23.8 10.2
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $46,969 $120,408 $350,991 $318,882 $651,990
Investments $1,994,450 $2,155,357 $2,406,877 $2,589,226 $2,149,956
Receivables $0 $156 $156 $152,360 $25,225
Gross land, buildings, equipment (LBE) $69,122 $71,331 $74,336 $71,705 $81,750
Accumulated depreciation (as a % of LBE) 80.2% 90.2% 92.8% 89.0% 83.1%
Liabilities (as a % of assets) 21.6% 21.6% 7.7% 4.6% 9.3%
Unrestricted net assets $1,512,971 $1,655,577 $2,022,656 $2,598,664 $2,014,109
Temporarily restricted net assets $60,323 N/A N/A N/A N/A
Permanently restricted net assets $67,252 N/A N/A N/A N/A
Total restricted net assets $127,575 $187,100 $589,365 $364,868 $609,230
Total net assets $1,640,546 $1,842,677 $2,612,021 $2,963,532 $2,623,339

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Executive Director

Dr. Mary Van Haneghan

Throughout her 20-year career, Mary has demonstrated the skills necessary to lead across a variety of areas crucial to the WSA’s continued progress. Mary began her career as a direct service professional working in residential programming; during her tenure, she worked in various capacities including day habilitation, residential habilitation, post-secondary education, transitional services, case management, supported employment, behavioral health, nursing, and early intervention. Since 2013, she has served as the Chief Executive Officer for chapters of The Arc in both Alaska and Texas. Prior to these roles, she worked for one of Western New York’s largest nonprofit health and human service agencies and assisted in creating systematic change across the state. Dr. Van Haneghan earned a bachelor’s degree in business management from the University of Buffalo, a master’s degree in adult education and literacy from Buffalo State College, and a doctorate in education from Walden University.

Number of employees

Source: IRS Form 990

WILLIAMS SYNDROME ASSOCIATION INC

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
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Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

WILLIAMS SYNDROME ASSOCIATION INC

Board of directors
as of 02/01/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Cyndra Cole