Cystic Fibrosis Foundation
79% goes to programs $37 to raise $100 Strong reserves
Cystic Fibrosis Foundation is a 501(c)(3) organization based in Bethesda, Maryland, registered in 1957, with $355,798,320 in FY2024 revenue. CharityIndex grades it B+, and it directs about 79% of spending to programs.
4550 Montgomery Aveste 1100 N, Bethesda, MD, 20814 EIN 13-1930701 Since 1957
Revenue (FY2024)
$355.8M
▲ 21.8% vs prior year
Diseases median: $206K
Expenses (FY2024)
$439.1M
Net assets
$4.7B
Employees
875
CharityIndex rating
One independent A+ to F grade from four published criteria, each scored separately from IRS filings and combined by weight.
B+
BProgram efficiency40% of the rating79% to programs · $37 to raise $100
Measures how much of every dollar spent actually reaches programs, plus what it costs to raise $100 of donations. The worse of the two measures sets the letter (85%+ to programs is an A; under $15 to raise $100 is an A), averaged over the three most recent filings. For Cystic Fibrosis Foundation: 79% to programs · $37 to raise $100 earns a B on this criterion. See the exact thresholds →
C+Financial health25% of the rating128 mo reserves · -23% margin
Measures whether the organization is built to last: how many months its reserves would cover expenses (3+ months earns an A-range score, but hoarding 5+ years of budget is capped) and whether it runs a surplus or a deficit. For Cystic Fibrosis Foundation: 128 mo reserves · -23% margin earns a C+ on this criterion. See the exact thresholds →
A+Governance25% of the rating6 of 6 checks met
Checks how the organization is run, from its own Form 990: an independent board majority, a board of five or more, conflict-of-interest, whistleblower and document-retention policies, and independently audited financials. The share of disclosed checks that pass sets the letter. For Cystic Fibrosis Foundation: 6 of 6 checks met earns a A+ on this criterion. See the exact thresholds →
A+Transparency10% of the rating5 of 5 disclosure signals
Counts five disclosure signals: a recent filing, a mission statement, program descriptions, a listed website, and the full expense breakdown. More disclosure, better letter. For Cystic Fibrosis Foundation: 5 of 5 disclosure signals earns a A+ on this criterion. See the exact thresholds →
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Mission
To cure cf and provide all people with cf the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the cf community, and advancing high-quality, specialized care.
What they do
Education program expenses. see schedule o.
Community service program expenses. see schedule o.
Contact & location
- Address
- 4550 Montgomery Aveste 1100 N, Bethesda, MD, 20814
- City
- Bethesda
- State
- Maryland
- Subcategory
- Birth Defects & Genetic Diseases
- Phone
- …
- Website
- …
Financial trends
Revenue grew from $297.7M (FY2013) to $355.8M (FY2024) across 12 reported years.
Financial snapshot
Financial health & position (FY2024)
Liabilities $292.6MNet assets $4.7B
Operating margin
-23.4%
Spent more than it raised in the latest fiscal year.
Total assets
$5.0B
Total liabilities
$292.6M
Net assets
$4.7B
Salaries & benefits
$143.7M
33% of expenses
Board members
17
16 independent
Financials by year
| Fiscal year | Revenue | Expenses | Net assets | Total assets | Form |
|---|---|---|---|---|---|
| 2024 | $355,798,320▲21.8% | $439,138,919▼1.0% | $4,693,624,506▲2.2% | $4,986,222,387▲2.1% | 990 |
| 2023 | $292,016,280▲17.4% | $443,404,599▲11.8% | $4,592,956,300▲3.4% | $4,885,921,122▲3.2% | 990 |
| 2022 | $248,630,352▼40.4% | $396,664,114▲5.6% | $4,443,719,016▼18.0% | $4,735,058,992▼16.8% | 990 |
| 2021 | $417,237,551▼47.9% | $375,611,186▼1.5% | $5,416,630,309▲6.2% | $5,691,109,976▲6.0% | 990 |
| 2020 | $800,629,953▲32.2% | $381,380,991▲9.4% | $5,098,993,014▲20.4% | $5,369,999,661▲20.0% | 990 |
| 2019 | $605,778,425▲120% | $348,650,099▲3.2% | $4,236,708,832▲12.2% | $4,476,511,082▲11.5% | 990 |
| 2018 | $275,790,756▲0.1% | $337,912,568▲15.4% | $3,775,363,472▼10.0% | $4,013,935,956▼8.8% | 990 |
| 2017 | $275,482,021▲43.1% | $292,766,690▼2.3% | $4,194,186,065▲12.4% | $4,401,077,858▲12.3% | 990 |
| 2016 | $192,528,975▲29.7% | $299,650,531▲55.3% | $3,732,155,178▲1.4% | $3,919,394,927▲3.0% | 990 |
| 2015 | $148,459,096▼95.6% | $192,986,761▲141% | $3,679,424,528▼3.5% | $3,803,485,303▼3.0% | 990 |
| 2014 | $3,349,013,060▲1025% | $80,021,438▲6.6% | $3,814,362,946▲538% | $3,922,688,693▲466% | 990 |
| 2013 | $297,690,483 | $75,047,721▼5.3% | $597,765,846▲70.5% | $692,698,706▲59.2% | 990 |
| 2012 | — | $79,288,914▼36.9% | $350,629,883▲99.8% | $435,100,702▲101% | 990 |
| 2011 | — | $125,721,614▲85.0% | $175,448,915▼6.8% | $216,321,364▼2.1% | 990 |
| 2010 | — | $67,973,496 | $188,293,709 | $221,040,934 | 990 |
Original Form 990 PDFs (the Form column) are served by ProPublica Nonprofit Explorer, as filed with the IRS. Create a free account to download the CSV report.
Leadership & compensation (FY2024)
Highest-paid: John C Mahler Jr Md — $1,866,868 (0.43% of total expenses)
| Name | Title | Hours/week | Compensation |
|---|---|---|---|
| John C Mahler Jr Md | Chief Investment Officer | 40 | $1,866,868 |
| Andrew Lewis | Managing Director, Investments | 40 | $1,363,454 |
| Earl A Lee | Managing Director, Investments | 40 | $1,226,269 |
| Michael P Boyle Md | President & Ceo | 40 | $1,054,388 |
| Eric Koehrsen | Managing Director, Investments | 40 | $976,105 |
| Irena Barisic | Evp & Chief Operating & Financial Officer | 40 | $761,939 |
| John P Clancy Md | Svp, Clinical Research | 40 | $669,826 |
| Gentiana S Arovas | Managing Director, Investments Operations | 40 | $642,532 |
| Albert Faro Md | Chief Medical Officer Beg. 7/1/2024 | 40 | $571,672 |
| Michael B Cavadel | Svp, Chief Legal Officer | 40 | $558,135 |
| Steven Rowe Md | Evp, Chief Scientific Officer | 32 | $534,655 |
| Bruce Marshall Md | Chief Medical Officer Ending 7/1/2024 | 40 | $515,472 |
| Enrique Lin Shiao Phd | Principal of Mission Related Investments | 40 | $507,691 |
| Carole B Griego Md | Trustee | 3 | — |
| David A Mount | Treasurer | 5 | — |
| Dodzie Sogah Phd | Trustee | 3 | — |
| Dominic J Caruso | Trustee | 3 | — |
| Elise Eberwein | Trustee | 3 | — |
| Eric R Olson Phd | Vice Chair | 5 | — |
| Eric Schneider Md | Trustee | 3 | — |
Top vendors & contractors (FY2024)
| Contractor | Services | Paid |
|---|---|---|
| Vertex Pharmaceuticals Inc | Contracted Research | $12,500,000 |
| Prime Medicine Inc | Contracted Research | $6,000,000 |
| Anagram Therapeutics Inc | Contracted Research | $5,500,000 |
| Pioneering Medicine (cf) | Contracted Research | $5,211,571 |
| Slalom LLC | Technology Consulting | $3,656,673 |
Grants received · $3.2B total
768 grants to Cystic Fibrosis Foundation totaling $3.2B, reported by foundations on their Schedule I filings — showing the 15 most recent.
Grants made · $189.6M in FY2024
624 grants totaling $189.6M in FY2024 — showing the 15 largest. All grants made by Cystic Fibrosis Foundation →
| Recipient | Purpose | Amount |
|---|---|---|
| Seattle Childrens Hospital | Clinical research study | $12,893,328 |
| Seattle Childrens Hospital | Clinical research center | $10,180,397 |
| Jaeb Center For Health Research Inc | Clinical research study | $6,907,230 |
| Seattle Childrens Hospital | Clinical research | $5,459,200 |
| Trustees of Indiana University | Clinical research study | $4,014,448 |
| Healthwell Foundation | Patient assistance | $3,000,000 |
| University of Alabama At Birmingham | Research | $2,962,497 |
| Case Western Reserve University | Research | $2,183,802 |
| University of Washington | Clinical research study | $2,155,537 |
| State University of Iowa | Therapeutics discovery research | $2,053,746 |
| Case Western Reserve University | Research center | $2,022,810 |
| Childrens Hospital Corporation | Adherence | $1,738,647 |
| University of Washington | Clinical research | $1,709,639 |
| University of Alabama At Birmingham | Therapeutics discovery research | $1,671,124 |
| Trustees of Columbia University | Therapeutics discovery research | $1,415,822 |
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Compare Cystic Fibrosis Foundation
Frequently asked questions
- Is Cystic Fibrosis Foundation a legitimate nonprofit?
- Yes. Cystic Fibrosis Foundation is a 501(c)(3) organization registered with the U.S. Internal Revenue Service under EIN 13-1930701, based in Bethesda, Maryland. Donations are tax-deductible.
- What is Cystic Fibrosis Foundation's EIN?
- Cystic Fibrosis Foundation's Employer Identification Number (EIN) is 13-1930701.
- How much revenue does Cystic Fibrosis Foundation report?
- Cystic Fibrosis Foundation reported $355,798,320 in total revenue on its fiscal year 2024 IRS Form 990 filing.
- How much of Cystic Fibrosis Foundation's spending goes to programs?
- Cystic Fibrosis Foundation spends about 79% of its total expenses on programs, based on its latest IRS Form 990.
- What financial grade does Cystic Fibrosis Foundation have?
- CharityIndex grades Cystic Fibrosis Foundation B+, based on program efficiency and fundraising cost.
- How much does Cystic Fibrosis Foundation's highest-paid employee make?
- The highest reported compensation on Cystic Fibrosis Foundation's latest Form 990 is $1,866,868, paid to John C Mahler Jr Md (Chief Investment Officer).
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Data for Cystic Fibrosis Foundation (EIN 13-1930701) comes from the IRS Business Master File and e-filed Form 990 returns, via CharityIndex. Figures reflect what the organization reported to the IRS for each fiscal year.