Foundation for Usp7 - Related Diseases

Nonprofit profile at a glance

EIN
821697564
IRS 990 coverage
2020–2025
Forms available
Form 990 2025
Location
Falmouth, ME, USA
Phone
2078990370
Rating
84
Verdict
STRONG
Rating confidence
Moderate
Sector
Specifically Named Diseases

Reported finances

Revenue
$249,730
Expenses
$243,451
Assets
$234,087
Liabilities
$0

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

Leadership & pay

5 people listed

People named in this filing

  • BO BIGELOW (CHAIRMAN)
  • CATHERINE MCCRANN (TREASURER)
  • KRISTEN HOFFECKER (VICE-CHAIRMAN)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

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

Overview

Mission

To cure usp7-related diseases by funding research and identifying more patients.

What it reported doing in 2025

Travel related to a phenotyping study and the annual rare-disease group conference hosted by the foundation for prader-willi research.

Operating model

Revenue model
Donor-supported. 100% 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. Some filing-based governance responses are negative or unanswered and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 86
  • Transparency & Controls: 92
  • Accountability: 76
  • Sustainability: 48
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 96.3%; rating input score 96
  • Program expense ratio: 98.7%; rating input score 99
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 3 of 7 controls in place; rating input score 43
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 2.5%; rating input score 42; 42nd percentile among comparable filings
  • Total-asset coverage ratio: 0.96; rating input score 40; 40th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings

Growth

  • Program expense growth: 25% per year; rating input score 100; 87th percentile among comparable filings
  • Revenue growth: 10% per year; rating input score 100; 69th percentile among comparable filings
  • Asset growth: -2.7% per year; rating input score 0; 14th percentile among comparable filings

Details

  • Where the money goes: 96.3% of revenue deployed · 98.7% of spending went to programs
  • Governance: 5 of 5 board members independent · 3 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $240K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 16 of 16 current checks pass
  • Schedules: 3 filed schedules · includes major donors
  • Filing history: 6 filing years from 2020 to 2025
  • Contacts: How to reach this organization
  • 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 — Accountability: Governance controls: 3 of 6 not reported.
  • Moderate — Sustainability: Operating margin scored 42/100.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 40/100.