Cystic Fibrosis Foundation

Overview

Mission

See schedule o

What it reported doing in 2024

Community Service Program Expenses. SEE SCHEDULE O.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Hybrid. The nonprofit split its reported program spending across 42% for direct work, and 58% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

Nonprofit profile at a glance

EIN
131930701
IRS 990 coverage
2010–2024
Forms available
Form 990 2024, Form 990-T 2024, Form 990-N 2014
Location
Bethesda, MD, USA
Phone
3019514422
Rating
85
Verdict
STRONG
Rating confidence
Standard
Sector
Birth Defects and Genetic Diseases

Official website

Reported finances

Revenue
$355,798,320
Expenses
$439,138,919
Assets
$4,986,222,387
Liabilities
$292,597,881

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

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 the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 83
  • Transparency & Controls: 90
  • Accountability: 96
  • Sustainability: 43
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 79%; rating input score 79
  • Fundraising efficiency: $2.73 raised per $1 spent on fundraising; rating input score 9; 9th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 95.2%; rating input score 95; 35th percentile among comparable filings
  • Pay-setting controls: 6 of 6 controls in place; rating input score 100
    • Compensation committee: Pass
    • Independent consultant: Pass
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 4 of 8 controls in place; rating input score 50
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Pass
    • Conducts site visits: Fail
    • Requires grant agreements: Pass
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 48th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Yes; rating input score 100

Accountability

  • Independent voting board: 94.1%; rating input score 94; 43rd percentile among comparable filings
  • Governance controls: 9 of 9 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: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -23.4%; rating input score 3; 3rd percentile among comparable filings
  • Total-asset coverage ratio: 11.35; rating input score 92; 92nd percentile among comparable filings
  • Liabilities to assets ratio: 0.06; rating input score 87; 87th percentile among comparable filings
  • Officer compensation ratio: 3%; rating input score 38; 38th percentile among comparable filings

Growth

  • Program expense growth: 10.7% per year; rating input score 100; 76th percentile among comparable filings
  • Revenue growth: -2.4% per year; rating input score 0; 2nd percentile among comparable filings
  • Asset growth: 11.4% per year; rating input score 100; 76th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 79% of spending went to programs
  • Governance: 16 of 17 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $346.7M in reported program spending
  • Leadership: top reported pay $1.9M · 29 people listed · 6 of 6 pay-setting controls reported
  • Highest-paid contractors: 5 contractors listed · $32.9M reported
  • Consistency: 48 of 49 current checks pass · 1 finding to review
  • Schedules: 11 filed schedules · includes major donors, foreign activity, grants, executive pay, and related organizations
  • Filing history: 14 annual filings from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 637 filed money-flow records
  • Related organizations: 628 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 — Financial Efficiency: Fundraising efficiency scored 9/100.
  • Review — Transparency & Controls: Foreign activity oversight: 4 of 8 not reported.
  • High — Sustainability: Operating margin scored 3/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Officer compensation ratio scored 38/100.
  • Review — Transparency & Controls: Foreign grant itemization did not reconcile in the filed values.

Leadership & pay

29 people listed

Highest reported compensation

  • JOHN C MAHLER JR MD (CHIEF INVESTMENT OFFICER): $1,942,627 total reported compensation
  • EARL A LEE (MANAGING DIRECTOR, INVESTMENTS): $1,594,752 total reported compensation
  • ANDREW LEWIS (MANAGING DIRECTOR, INVESTMENTS): $1,401,714 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024.