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.
We’re pursuing treatments to help people with CF live healthier lives and groundbreaking therapies that could lead to a cure for CF.
Genetic Therapies anchor
Genetic therapies could fix or replace the CFTR gene and ultimately benefit everyone with CF.
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:
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:
Treating Infections anchor
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.
Enrolled people with CF in the STOP 360 trial to study pulmonary exacerbations by comparing antibiotic treatments.
Enrolled people with nontuberculous mycobacteria in the ABATE trial to study IV gallium treatment.
addressing CF complications anchor
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.
Supported the STRONG-CF trial to better understand nutrition, including in those with advanced CF lung disease.
Supported the MAYFLOWERS study, which is enrolling eligible women with CF to evaluate how CF affects pregnancy with or without CFTR modulator use.
In 2023, the CF Foundation supported 47 projects related to advanced lung disease and lung transplantation.
nacfc anchor
Well-being and mental health remain top priorities for people with CF, their caregivers, and their care teams. Plenary 3 offered an overview of mental health clinical care practices, evidence-based interventions, and research in mental health.
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.
We are dedicated to supporting people with CF inside and outside the clinic.
CI anchor
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:
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.
mod anchor
For those eligible to take CFTR modulators, research suggests that starting modulators early could help slow the progression of CF.
Trikafta approved for children 2–5 years old.
Ivacaftor (Kalydeco®) approved for babies older than 1 month
mh anchor
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.
health equity anchor
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.
"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."
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.
Last year, we provided Health Equity Team Science Awards to support research to better understand and reduce barriers to optimal health.
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.
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.
people with CF anchor
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.
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.
comm support anchor
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.
CF Foundation Compass helps people with CF navigate insurance, financial, and legal issues. In 2023, case managers:
advocacy anchor
From sharing stories with Congress to sending messages to legislators and other decision-makers, our CF community spoke out on important issues. Last year:
“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.
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.
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.
joe anchor
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.”
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.
Thank you to our corporate champions who provide support of $100,000 or more.
Platinum
Gold
Silver
Bronze
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| 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 |
View the CF Foundation’s condensed financial information.