Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is a 501(c)(3) nonprofit organization established in 1955 and headquartered in Bethesda, Maryland. The organization is the world's leader in the search for a cure for cystic fibrosis and serves as a critical funding source for CF research, clinical care, and community support. The Foundation operates over 80 chapters and offices across the United States and funds a network of more than 130 accredited CF care centers.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$5.0B
+2.1% YoY
Annual Giving
$189.6M
+1.5% YoY
Grant Count
624
-1.4% YoY
Avg Grant Size
$304K
+3.0% YoY
Mission & Focus Areas
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to 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.
The Foundation's primary focus areas include:
- Research & Drug Development: Funding innovative research initiatives and therapies to tackle cystic fibrosis from multiple angles
- Genetic Therapies: Supporting development of genetic therapies with potential to work for any person with CF, regardless of their CFTR mutations
- Clinical Care: Funding and supporting a network of specialized CF care centers across the United States
- Community Partnership: Engaging with and supporting the CF community through education, advocacy, and resources
Grantmaking
The Foundation is a major grantmaker in the cystic fibrosis research space. Recent grant activity includes:
Grant Range
**: Typical awards range from $16 to $12,893,328
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Geographic Focus
Where this funder awards grants
The Foundation's grantmaking focuses primarily on California, Ohio, and Pennsylvania, though the organization operates chapters and funds research nationally across the United States.
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
2024 Financial Data:
- Total Revenue: $356 million
- Total Expenses: $439 million
- Total Assets: $4.99 billion
- Total Liabilities: $293 million
2023 Financial Data:
- Total Revenue: $292,016,280
- Total Expenses: $443,404,599
- Total Assets: $4,885,921,122
- Number of Employees: 847
The organization maintains a Four-Star rating with a 100% score based on accountability, finance, culture, and community metrics.
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $4,986,222,387 | $4,885,921,122 | $4,735,058,992 |
| Revenue | $355,798,320 | $292,016,280 | $248,630,352 |
| Expenses | $439,138,919 | $443,404,599 | $396,664,114 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $231,324,892 | $179,149,610 | $128,066,687 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
Grant Size Distribution
250 grants across all recorded years
Open Grants
24 open opportunities from Cystic Fibrosis Foundation
CF Foundation/NIH K-Unfunded Award
CYSTIC FIBROSIS FOUNDATION
Amount
Varies
Deadline
Rolling / Open
CFF/NIH R01-Unfunded Award
CYSTIC FIBROSIS FOUNDATION
Amount
Varies
Deadline
Rolling / Open
Clinical Fellowship – Research Awards Grant
CYSTIC FIBROSIS FOUNDATION
Amount
Up to US $105,000
Deadline
Rolling / Open
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Baylor College of Medicine ($575,049), Board of Regents of the University of Nebraska ($442,698), Ascension Seton ($394,953).
| Recipient | Purpose | Amount |
|---|---|---|
| Advocate Charitable Foundation Oak Brook, IL | ADULT CARE | $43,047 |
| Advocate Charitable Foundation | CF CARE CENTER | $204,730 |
| Albany Medical College | CF CARE CENTER | $202,590 |
| Albert Einstein College of Medicine | PILOT STUDY | $56,000 |
| All Children's Research Institute Inc | CLINICAL RESEARCH CENTER | $168,372 |
| Ann & Robert H Lurie Children's Hospital of Chicago | ADULT CARE | $56,172 |
| Ann & Robert H Lurie Children's Hospital of Chicago | CF CARE CENTER | $173,000 |
| Ann & Robert H Lurie Children's Hospital of Chicago | CLINICAL RESEARCH CENTER | $111,237 |
| Ann & Robert H Lurie Children's Hospital of Chicago | RESEARCH | $130,000 |
| Ann & Robert H Lurie Children's Hospital of Chicago | TRAINING | $134,000 |
Leadership & Key People
Leadership team and compensation from IRS filings
- President and Chief Executive Officer: Michael P. Boyle, MD
- Board of Trustees Chair: KC Bryan White
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| MICHAEL P BOYLE MD | PRESIDENT & CEO | 40 | $1,054,388 |
| 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 | — |
| JESSICA H BOYD MD | TRUSTEE | 3 | — |
| JOHN S WEINBERG | EXECUTIVE VICE CHAIR | 5 | — |
| KATE O'DONNELL | TRUSTEE | 3 | — |
| KC BRYAN WHITE | CHAIR | 8 | — |
| LOUIS A DEFALCO | VICE CHAIR | 5 | — |
| PAUL A MOTENKO | TRUSTEE | 3 | — |
| ROBERT H NIEHAUS | VICE CHAIR | 5 | — |
| STEVEN SHAK MD | TRUSTEE | 3 | — |
| TERESA L ELDER | VICE CHAIR | 5 | — |
| IRENA BARISIC | EVP & CHIEF OPERATING & FINANCIAL OFFICER | 40 | $761,939 |
| MICHAEL B CAVADEL | SVP, CHIEF LEGAL OFFICER | 40 | $558,135 |
| ALBERT FARO MD | Chief Medical Officer Beg. 7/1/2024 | 40 | $571,672 |
| BRUCE MARSHALL MD | Chief Medical Officer Ending 7/1/2024 | 40 | $515,472 |
| JOHN C MAHLER JR MD | CHIEF INVESTMENT OFFICER | 40 | $1,866,868 |
| JOHN P CLANCY MD | SVP, CLINICAL RESEARCH | 40 | $669,826 |
| STEVEn ROWE MD | EVP, Chief Scientific Officer | 32 | $534,655 |
| ANDREW LEWIS | MANAGING DIRECTOR, INVESTMENTS | 40 | $1,363,454 |
| EARL A LEE | MANAGING DIRECTOR, INVESTMENTS | 40 | $1,226,269 |
| ENRIQUE LIN SHIAO PHD | Principal of Mission Related Investments | 40 | $507,691 |
| ERIC KOEHRSEN | MANAGING DIRECTOR, INVESTMENTS | 40 | $976,105 |
| GENTIANA S AROVAS | MANAGING DIRECTOR, INVESTMENTS OPERATIONS | 40 | $642,532 |
Recent News & Activity
Recent developments and announcements
**FDA Approvals**: The Foundation announced FDA approval for the expansion of two CFTR modulator therapies to additional rare CF mutations (April 2026)
**Advocacy**: The CF community united for the 19th Annual March on the Hill to advocate for affordable, comprehensive care (March 2026)
**Safety Updates**: Important safety updates were added to CFTR modulators' labels (March 2026)
**Drug Development Legacy**: The Foundation has played a major role in the development and use of five FDA-approved therapies, including ivacaftor (Kalydeco) and Trikafta
**Scientific Discovery**: In 1989, scientists working for the Foundation discovered the gene that causes cystic fibrosis
Hara Levy awarded Cystic Fibrosis Foundation grantSubject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What does Cystic Fibrosis Foundation fund?
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to 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. The Foundation's primary focus areas include: • **Research & Drug Development**: Funding innovative research initiatives and therapies to tackle cystic fibrosis from multiple angles • **Genetic Therapies**: Supporting devel…
How do I apply for a grant from Cystic Fibrosis Foundation?
The Foundation is a major grantmaker in the cystic fibrosis research space. Recent grant activity includes: • **Grant Range**: Typical awards range from $16 to $12,893,328 • **Recent Major Grants** (2023): • Seattle Children's Hospital: $7,999,704 (Clinical Research Center) • Seattle Children's Hospital: $7,928,169 (Clinical Research Study) • Jaeb Center for Health Research: $7,020,681 (Clinical Research Study) • **Total Grants Made**: Over 492 grants totaling $149,502,289 in 2023 **Active Gran…
Where does Cystic Fibrosis Foundation make grants?
The Foundation's grantmaking focuses primarily on California, Ohio, and Pennsylvania, though the organization operates chapters and funds research nationally across the United States.
What size grants does Cystic Fibrosis Foundation award?
In 2024, Cystic Fibrosis Foundation awarded 624 grants totaling $189.6M — an average of about $304K per grant, based on its IRS Form 990 filings.
What is Cystic Fibrosis Foundation's EIN?
Cystic Fibrosis Foundation's EIN (Employer Identification Number) is 13-1930701. IRS Form 990 filing data is available on this page for 2020–2024.
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Data last updated June 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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