Foundation for Prader-willi Research Inc

Nonprofit profile at a glance

EIN
311763110
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Covina, CA, USA
Phone
8883225487
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$6,173,660
Expenses
$6,062,339
Assets
$8,871,895
Liabilities
$3,480,573

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

Leadership & pay

13 people listed

Executive titles in this filing

  • SUSAN HEDSTROM (EXECUTIVE DIRECTOR)

Highest reported compensation

  • THERESA STRONG (DIRECTOR OF RESEARCH PROGR): $173,430 total reported compensation
  • SUSAN HEDSTROM (EXECUTIVE DIRECTOR): $132,351 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 eliminate the challenges of prader willi syndrome through the advancement of research and therapeutic development.

What it reported doing in 2024

Through the implementation of translational research programs, the management of a world-class grants program, and the development of prader willi syndrome (pws) research tools, the foundation for prader-willi research (fpwr) advances research in order to develop new treatments for pws and improve the health and well-being of those with pws. Under the guidance of our scientific advisory board through a carefully managed grants process, fpwr selects research projects based on the collaborative input of researchers and parents, choosing projects that are both scientifically meritorious and highly relevant for individuals with pws and their families.

Operating model

Revenue model
Donor-supported. 88% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 64% of its reported program spending out as grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 83
  • Transparency & Controls: 72
  • Accountability: 100
  • Sustainability: 43
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 87.4%; rating input score 87
  • Program expense ratio: 87.5%; rating input score 87
  • Fundraising efficiency: $14.94 raised per $1 spent on fundraising; rating input score 51; 51st 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: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 44th 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: 1.8%; rating input score 40; 40th percentile among comparable filings
  • Total-asset coverage ratio: 1.46; rating input score 51; 51st percentile among comparable filings
  • Liabilities to assets ratio: 0.39; rating input score 27; 27th percentile among comparable filings
  • Officer compensation ratio: 5%; rating input score 53; 53rd percentile among comparable filings

Growth

  • Program expense growth: 11.7% per year; rating input score 100; 69th percentile among comparable filings
  • Revenue growth: 11.5% per year; rating input score 100; 73rd percentile among comparable filings
  • Asset growth: 12.1% per year; rating input score 100; 66th percentile among comparable filings

Details

  • Where the money goes: 87.4% of revenue deployed · 87.5% of spending went to programs
  • Governance: 11 of 11 board members independent · 8 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $5.3M in reported program spending
  • Leadership: top reported pay $173K · 13 people listed · 3 of 6 pay-setting controls reported
  • Consistency: 35 of 35 current checks pass
  • Schedules: 8 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 22 filed money-flow records
  • Related organizations: 20 filed related-organization links
  • 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 — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Review — Financial Efficiency: Fundraising efficiency scored 51/100.
  • Moderate — Sustainability: Operating margin scored 40/100.
  • Review — Sustainability: Total-asset coverage ratio scored 51/100.
  • High — Sustainability: Liabilities to assets ratio scored 27/100.
  • Review — Sustainability: Officer compensation ratio scored 53/100.