Williams Syndrome Association Inc

Nonprofit profile at a glance

EIN
223305007
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Newark, NJ, USA
Phone
2485090060
Rating
79
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Official website

Reported finances

Revenue
$2,016,743
Expenses
$2,143,132
Assets
$2,831,149
Liabilities
$60,643

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • BILL PALMER (PRESIDENT)
  • REBEKAH PAGIS (VICE PRESIDENT)
  • MARY VAN HANEGHAN (EXECUTIVE DIRECTOR THROUGH JUL'24)
  • SARAH SCHAEFER (EXECUTIVE DIRECTOR AS OF JUL'24)

Highest reported compensation

  • SARAH SCHAEFER (EXECUTIVE DIRECTOR AS OF JUL'24): $161,534 total reported compensation
  • MARY VAN HANEGHAN (EXECUTIVE DIRECTOR THROUGH JUL'24): $124,511 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

We support our mission by:- providing information and emotional support to individuals with characteristics of williams syndrome, their families, and the professionals who work with them- developing programs and services to help build strengths and meet challenges from early childhood through adulthood- increasing public awareness and understanding of williams syndrome, and- encouraging and supporting research into a wide range of issues related to williams syndrome

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Direct operator. The filing allocates 95% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 68
  • Transparency & Controls: 83
  • Accountability: 100
  • Sustainability: 34
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 76.5%; rating input score 76
  • Program expense ratio: 71%; rating input score 71
  • Fundraising efficiency: $5.94 raised per $1 spent on fundraising; rating input score 21; 21st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 3 of 6 controls in place; rating input score 50
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 72nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 8 of 8 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -6.3%; rating input score 18; 18th percentile among comparable filings
  • Total-asset coverage ratio: 1.32; rating input score 47; 47th percentile among comparable filings
  • Liabilities to assets ratio: 0.02; rating input score 80; 80th percentile among comparable filings
  • Officer compensation ratio: 13.3%; rating input score 22; 22nd percentile among comparable filings

Growth

  • Program expense growth: 1.9% per year; rating input score 100; 22nd percentile among comparable filings
  • Revenue growth: 4% per year; rating input score 100; 34th percentile among comparable filings
  • Asset growth: 2.7% per year; rating input score 100; 23rd percentile among comparable filings

Details

  • Where the money goes: 76.5% of revenue deployed · 71% of spending went to programs
  • Governance: 15 of 15 board members independent · 8 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $1.5M in reported program spending
  • Leadership: top reported pay $162K · 17 people listed · 3 of 6 pay-setting controls reported
  • Highest-paid contractors: 2 contractors listed · $388K reported
  • Consistency: 37 of 37 current checks pass
  • Schedules: 7 filed schedules · includes major donors, grants, and executive pay
  • Filing history: 15 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 21/100.
  • High — Sustainability: Operating margin scored 18/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 47/100.
  • High — Sustainability: Officer compensation ratio scored 22/100.