Prader-willi Syndrome Association (USA)

Nonprofit profile at a glance

EIN
411306908
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Brandon, FL, USA
Phone
9413120400
Rating
82
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$3,014,155
Expenses
$2,681,770
Assets
$3,636,718
Liabilities
$148,208

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

14 people listed

Executive titles in this filing

  • STACY WARD (CEO)

Highest reported compensation

  • STACY WARD (CEO): $134,856 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To enhance the quality of life and empower those affected by prader-willi syndrome.

What it reported doing in 2025

Family support: pwsa/USA's family support team provides individuals diagnosed with prader-willi syndrome, their families, and care providers with critical information and resources on pws. We also provide education to medical providers, schools, and professional care givers through ongoing training, toolkits and other valuable resources. We support the family from nicu through all stages of the pws journey. In 2025, pwsa's family support team responded to 4,567 family support inquiries providing support to families in all 50 u.s. States and more than 20 different countries.

Operating model

Revenue model
Donor-supported. 83% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 98% 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

STRONG - 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 some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 73
  • Transparency & Controls: 90
  • Accountability: 90
  • Sustainability: 54
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 74.3%; rating input score 74
  • Program expense ratio: 82.8%; rating input score 83
  • Fundraising efficiency: $10.34 raised per $1 spent on fundraising; rating input score 37; 37th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.8%; rating input score 94; 21st percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 75th 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: 6 of 8 controls in place; rating input score 75
    • 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: Fail
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 11%; rating input score 58; 58th percentile among comparable filings
  • Total-asset coverage ratio: 1.36; rating input score 44; 44th percentile among comparable filings
  • Liabilities to assets ratio: 0.04; rating input score 63; 63rd percentile among comparable filings
  • Officer compensation ratio: 5%; rating input score 57; 57th percentile among comparable filings

Growth

  • Program expense growth: 2.5% per year; rating input score 100; 22nd percentile among comparable filings
  • Revenue growth: 4.4% per year; rating input score 100; 33rd percentile among comparable filings
  • Asset growth: 6.1% per year; rating input score 100; 39th percentile among comparable filings

Details

  • Where the money goes: 74.3% of revenue deployed · 82.8% of spending went to programs
  • Governance: 15 of 15 board members independent · 6 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $2.2M in reported program spending
  • Leadership: top reported pay $135K · 14 people listed
  • Consistency: 32 of 33 current checks pass · 1 finding to review
  • Schedules: 9 filed schedules · includes major donors and grants
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • 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.

  • Moderate — Financial Efficiency: Fundraising efficiency scored 37/100.
  • Review — Accountability: Governance controls: Form 990 shared with the board not reported.
  • Review — Sustainability: Operating margin scored 58/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 44/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Review — Sustainability: Officer compensation ratio scored 57/100.