Annual Report

2023 in Focus
2023 In Focus Text

In 2023, the Cystic Fibrosis Foundation celebrated continued achievements and milestones toward our mission of curing CF. With your support, we are transforming what it means to live with cystic fibrosis.

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Michael Boyle's Letter

Read the Annual Report Letter

 
cure
CURE: Investing in Tomorrow’s Treatments

We’re pursuing treatments to help people with CF live healthier lives and groundbreaking therapies that could lead to a cure for CF.  

Jump to Section Genetic Therapies Treating Infections Addressing CF Complications What We Learned at NACFC 2023

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Genetic Therapies

Genetic therapies could fix or replace the CFTR gene and ultimately benefit everyone with CF.

mRNA

We are investing in potential inhaled messenger RNA (mRNA) therapies designed to enable cells in the lungs to make a functional CFTR protein regardless of a person’s mutations. In 2023, we: 

Committed up to $15M to ReCode Committed up to $9M to Arcturus Supported enrollment for Vertex Phase 1 trial via the TDN
Delivery

To overcome challenges in delivering a genetic therapy to the body, we are investing in technologies that would target the right cells and avoid provoking an immune system response. In 2023, we committed:

Up to $2M in Nosis Up to $2M in Nanite Up to $3.5M in Gensaic Up to an additional $2.8M in 4D Molecular Up to $3M in ViaNautis
 

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Treating Infections

To better fight infections, we need new therapeutics and maximally effective treatment regimens. In 2023, we:

Invested up to an additional $3.9 million in TB Alliance to develop drugs for difficult-to-treat nontuberculous mycobacteria infections.

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Enrolled people with CF in the STOP 360 trial to study pulmonary exacerbations by comparing antibiotic treatments.

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Enrolled people with nontuberculous mycobacteria in the ABATE trial to study IV gallium treatment.

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Addressing CF Complications

To help improve quality of life, we are investing in studies to learn more about how CF affects the whole body and in therapies with the potential to help ease symptoms. In 2023 we: 

Invested up to an additional $15.5 million in Anagram Therapeutics to develop a novel pancreatic enzyme replacement therapy.

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Supported the STRONG-CF trial to better understand nutrition, including in those with advanced CF lung disease.

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Supported the MAYFLOWERS study, which is enrolling eligible women with CF to evaluate how CF affects pregnancy with or without CFTR modulator use. 

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In 2023, the CF Foundation supported 47 projects related to advanced lung disease and lung transplantation.

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What We Learned at NACFC 2023

The 2023 North American CF Conference (NACFC) plenaries discussed important topics in research and care: genetic therapies, infections, and mental health.

Chris, adult with CF
As individuals and as a community, we are focused first on lengthening life — rightly so — but we can lose focus on the quality of that life, which is based deeply on the condition of our hearts and minds. We need to address both the physical side and the mental side of health to be fully well. Mental health is a state of well-being, not just the absence of disorder.

2023 marked 25 years of the CF Foundation-supported Therapeutics Development Network (TDN), the world’s largest CF clinical trial network.

 

Our Drug Development Pipeline tracks the progress of potential treatments for the underlying cause of CF and its complications, including mucus, inflammation, infection, and nutrition/GI. 

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CARE: Attending to the Whole Person

We are dedicated to supporting people with CF inside and outside the clinic.

Jump to Section Care Improvements Expanding Modulators to Young Children Mental Health Health Equity

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Care Improvements

The state of CF care is rapidly evolving as people with CF live longer and have different needs. We constantly fuel quality improvement in care at our more than 130 CF Foundation-accredited care centers. In 2023, we:

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Invested $43 million to fund quality improvement and care team professional development.

Conducted the nationwide Adapting CF Care survey to hear from people with CF, their families, and care teams to inform how care delivered at CF care centers could evolve as people with CF are living longer.

Supported the publishing of three clinical care guidelines or position papers advising standards of care in liver disease, nutrition, and post-transplant care. 

Provided data from the CF Foundation Patient Registry to support 24 peer-reviewed articles and 50 ongoing research projects.

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Expanding Modulators to Young Children

For those eligible to take CFTR modulators, research suggests that starting modulators early could help slow the progression of CF. 

Nolan Hess, child with CF

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Mental Health

We’re partnering with community members and care providers to research, recognize, and effectively treat the mental health needs of people with CF and their families.

Last year, we established the Prioritizing Research in Mental Health (PRIME) Working Group. The group is charged with identifying, prioritizing, and supporting new mental health research in CF. This includes understanding the mental health impact of CFTR modulators such as Trikafta.  

We funded $7.6 million in mental health research projects and awards.

Members of the CF community informed projects on medical traumatic stress, mental health screening, and how pain affects quality of life and mental health

Erik
I want to keep CF in the background of my life as much as possible … I want to be known not by my condition, but for what I love to do. And I want control over what I’m known as: caver by day, photographer by night.

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Health Equity

Everyone with CF deserves access to timely diagnosis and high-quality care. To make that possible, we’re taking steps to address known health care gaps.

Rena, parent of two children with CF

"After learning that the newborn screening has lower detection rates for the mutations that are more common among African Americans and that this trauma could have been prevented with further testing, it reignited a buried fire inside of me. I knew that I had to do something more to raise awareness and change things, if I could, so no other Black, Indigenous, and People of Color families continue to suffer like we have."

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Because early diagnosis results in better health outcomes, we have funded Screening Improvement Program awards for more than a decade to improve newborn screening processes. We continued that work in 2023 with awards to improve equity and timeliness in CF newborn screening.

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Last year, we provided Health Equity Team Science Awards to support research to better understand and reduce barriers to optimal health.

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We continued advocating for essential health programs that expand and protect coverage for people with CF. In 2023, more than 60% of state-level advocacy efforts advanced health equity issues such as protecting access to Medicaid and the Children’s Health Insurance Program, advancing newborn screening, and improving funding for state-based, public health insurance programs.

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Community
COMMUNITY: Guiding Our Progress

Together, our voices are louder, our community is stronger, and achieving our mission to cure CF is not just a rallying cry — it’s a promise.

Jump to Section People With CF Inspire Our Work Community Support Advocacy Honoring a CF Legend

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People With CF Inform Our Work

People with CF and their loved ones are the real experts on living with cystic fibrosis. Their experiences guide our goals and strategies.

Community Voice empowers people with CF and their loved ones to share their perspectives to inform CF research, care, and other programs. In 2023, Community Voice provided more than 50 virtual opportunities in English and Spanish for the CF community to share their experiences, focusing on topics such as pain management, evolving the CF care model, and developing the next generation of the CF Patient Registry.

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Our teams worked alongside Black people living with or impacted by CF, researchers, and care team members to provide recommendations in the areas of health equity and outcomes, diverse workforce development, and community. These recommendations will help the CF Foundation improve its work to achieve its mission to provide all people with CF the opportunity to live long, fulfilling lives.

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Community Support

We know that cystic fibrosis impacts everyday life. To help navigate the ups and downs, we provide resources and foster connections.  

Our CF Peer Connect program, which makes topic-specific, one-to-one connections between people with CF and their loved ones, expanded the program for Spanish speakers. Top topics in 2023 were new diagnoses for children and adults, and parenting a child with CF or as an adult with CF.

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CF Foundation Compass helps people with CF navigate insurance, financial, and legal issues. In 2023, case managers:
 

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Advocacy

From sharing stories with Congress to sending messages to legislators and other decision-makers, our CF community spoke out on important issues.

Melanie Lawerence
Melanie, 43

“Throughout my childhood and early teenage years, antibiotics were highly effective ... Now in my forties, the bacteria in my lungs are resistant to nearly all antibiotics except for Tobramycin, which I cannot take because it is so toxic to my already damaged kidneys and hearing,” delivered before the U.S. Senate Health, Education, Labor, and Pensions Subcommittee on Primary Health and Retirement Security on July 11, 2023.

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After a prescription drug affordability board (PDAB) in Colorado announced it would evaluate whether Trikafta was “unaffordable” for state residents, we encouraged people with CF and care teams to contact the PDAB and share how Trikafta has improved lives, demanding it remain accessible to people in Colorado. Based on this and related information, the board decided Trikafta was not unaffordable for Colorado consumers.

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Nationally, we continue to be a leading voice with federal lawmakers, regulators, and other decision-makers to protect key programs and improve health coverage for people with CF. In 2023, we championed a sustainable antibiotics pipeline by advocating for the PASTEUR Act and advocated for easing some financial burdens when accessing treatments by supporting the HELP Copays Act, among other legislation.

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Photograph of Joe O'Donell on blue background.
Honoring a CF Legend

Early in 2024, we honored the legacy of philanthropic leader and community champion Joe O’Donnell. Joe and his wife, Kathy, dedicated more than four decades to advancing the CF Foundation’s mission in honor of their son, Joey, who died of CF at age 12. CF Foundation President and CEO Michael Boyle said of O’Donnell, “He will be remembered as an unstoppable force whose commitment to finding a cure for CF had no bounds.”

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Our progress is possible because of your generosity, energy, and voice. Thank you for supporting the CF Foundation and our 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. 

Corporate Champions

Thank you to our corporate champions who provide support of $100,000 or more.

Platinum
American Airlines
Gold
CHOATE
Silver
Abbvie Duke Energy logo Global Partners Vertex Mastercard logo T-Mobile for Business logo Snellings Walters Valvoline
Bronze
  • BJ's Restaurants, Inc.  

  • Citi 

  • Costco Wholesale  

  • Driven Brands

  • FedEx  

  • Genentech

  • Google 

  • Insulite Glass Company  

  • K Trucking & Son Inc/BL Kitchen Transportation LLC 

  • Largo Concrete

  • MC Companies and Sharing the Good Life Foundation

  • Merrill, a Bank of America company
  • Microsoft Employee Giving  

  • Nestle Health Science

  • Quantum 

  • Tito's Handmade Vodka 

  • Vail Resorts 

  • Viatris

  • Walgreens

  • Wells Fargo 

  • World of Hyatt

Trustees and Advisors
     
KC Bryan White
Chair
Teresa L. Elder
Vice Chair
Eric R. Olson, PhD
Vice Chair
Michael L. Beatty, Esq.
nonvoting, Leadership Council Chair
Carole B. Griego, MD Eric C. Schneider, MD
Jessica H. Boyd, MD, MPH Catherine C. McLoud
nonvoting, Chair Emeritus
Steven Shak, MD
Michael P. Boyle, MD Peter J. Mogayzel Jr., MD, PhD
nonvoting, Pediatric CF Care Center Representative

Dodzie Sogah, PhD

James (Jamie) R. Butler, II
nonvoting, Advisor
Paul A. Motenko Eric J. Sorscher, MD
nonvoting, Medical Advisory Council Chair
Dominic J. Caruso David A. Mount
Treasurer
Jennifer Taylor-Cousar, MD
nonvoting, CF Adult Care Center Representative
Louis A. DeFalco 
Vice Chair
Robert H. Niehaus
Vice Chair
Doris F. Tulcin
nonvoting, Chair Emeritus
Elise Eberwein
nonvoting, Advisor
Kate O'Donnell John S. Weinberg
Executive Vice Chair

Corporate Officers

President and CEO

Michael P. Boyle, MD

Executive Vice President and Chief Operating and Financial Officer

Irena Barisic

Financials

View the CF Foundation’s condensed financial information.

2023 CF Foundation Annual Report Financials Download (PDF)