2025 Annual Report
Building the Future Together
Making cystic fibrosis more manageable, until we can make it no more — read our 2025 annual report to see our plans in action.
Message From Our CEO
Building the Future,
Together
Dear Friends,
As we reflect on 2025, I’m proud of what we achieved together. We made progress in top priorities across our three main areas of focus: cure, care, and community. Working with experts across our community, we also developed our next five-year strategic plan to guide our efforts and build a better future.
In cure, we are working to advance medicines that could treat every person with CF. In 2025, we continued pioneering the next frontier, as potential genetic therapies moved forward in clinical trials. We also worked alongside the community to urge Congress to protect federal research funding so scientists can continue making discoveries today and turn them into CF treatments tomorrow.
In care, we are focused on addressing the changing needs of people with CF, particularly as a growing number of adults are aging with the disease. We continued working closely with clinicians and care teams to find ways to make specialized care and treatments easier to access. We also supported progress on health issues important to the CF community, including new approaches to detect infections, a trial to improve CF-related diabetes management, and studies on the benefits of both early and long-term CFTR modulator use, as well as monitoring of side effects.
Finally, in community, we are making it easier to navigate daily life with CF, knowing that wellness extends beyond the clinic. Programs like Compass, CF Circles, and Community Voice delivered practical support, meaningful connection, and pathways for people with CF and their loved ones to share their experiences. Alongside this work, we partnered with the CF community to successfully advocate for state-level programs and policies to help families get the care and support they deserve.
Thank you for your continued partnership and support. Because of you, we can improve life with CF today and take bold steps toward a cure. We are deeply grateful to walk this path together. We will not stop until it’s done!
Michael P. Boyle, MD
President and CEO, Cystic Fibrosis Foundation
Program Area 01
The Most
Promising Science
Promising Science
We are driving scientific progress in genetic therapies for the lungs, as well as a cure for the whole body. In addition, we are developing new modulators and continuing studying longer-term effects of existing modulator treatments.
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Genetic Therapies
What are genetic therapies?
Genetic therapies aim to fix the faulty CFTR gene that causes cystic fibrosis. Current modulators work on the CFTR protein made by that gene, but not every person with CF can produce this protein. Genetic therapies offer the possibility of transformative treatments for all people with CF and the best chance for a cure.
How we're leading
Developing a genetic therapy for CF is complex. It requires expert understanding of the underlying biology of how CF affects the body and tools and resources specific to CF research. These are a few ways we are moving the CF genetic therapy field forward:
- We created a new website platform for companies to learn about our venture philanthropy work and to attract the best science. CF Foundation Mission Ventures invests in companies best positioned to achieve breakthrough treatments for CF. Through this direct venture investing arm, we source, fund, and manage programs fostering the most promising science to treat all CF symptoms and accelerate our mission to find a cure.
- We are supporting the REACH study, where more than 175 participants who can't take modulators have shared health information and data, to help companies run smaller and more efficient clinical trials and streamline development of new therapies.
- We advance research at the CF Foundation Therapeutics Lab into next-generation transformative treatments, particularly for individuals who cannot take modulators.
- We work with the FDA on clinical trial designs and to find opportunities to accelerate review timelines.
Community Blog
Giving Voice to Those Without Modulators
Read how members of the CF community are sharing their experiences living without modulators and helping shape a better future through the REACH study.
What we're funding
We are supporting multiple genetic therapy approaches that could lead to transformative therapies or ultimately a cure for CF. In 2025, we provided additional funding to the following biotech companies:
Prime Medicine, to support its early-stage gene editing therapy for CF, which may be able to permanently fix the defective CFTR gene
ReCode Therapeutics, for its Phase 2 mRNA therapy, which may treat anyone, regardless of their mutations
4D Molecular Therapeutics, to help expand a Phase 2 study of a gene therapy that aims to treat the lungs by delivering a harmless virus that avoids triggering the lungs' natural defenses
Cure - Genetic Therapies
Drug Development
Pipeline
Pipeline
Genetic Therapy
Gene therapy, RNA therapy, gene editing, and antisense oligonucleotides (ASOs).
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Carbon Biosciences
Gensaic
Nanite
Pioneering Medicines
Prime Medicine
ReCode Therapeutics / Intellia Therapeutics
ViaNautis Bio
Restore CFTR Protein
Modulators and nonsense readthrough therapies.
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Southern Research
Mucociliary Clearance
Therapies targeting mucus clearance in the airways.
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Anti-Inflammatory
Therapies targeting inflammation in the lungs and airways.
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Anti-Infective
Therapies targeting bacterial, viral, and fungal infections in people with CF.
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Owlstone Medical
SNIPR Biome
Nutritional-GI
Therapies targeting digestive and nutritional complications of CF.
Pre-clinical
Phase One
Phase Two
Phase Three
To Patients
Priority Clinical Studies
The Foundation supports a wide range of academic research into CF. Visit our list of key multisite clinical studies to learn more about some of our high-priority research areas.
CFTR Modulators
What are CFTR modulators?
These therapies correct the malfunctioning protein made by the gene that causes cystic fibrosis. Five modulators have been approved by the FDA and treat many people with CF. However, around 10-15% of people with CF cannot take modulators because they can’t tolerate side effects, or because their form of CF does not respond to them.
Today’s treatments
We have been studying the longer-term effects of modulators like Trikafta and Alyftrek and developing new ones that could provide people with more treatment choices.
- We’re funding an observational study to track mental health and liver function in people who switched to Alyftrek after having to stop or adjust their dosage on Trikafta because of side effects.
- We continued supporting Sionna Therapeutics, which has several new modulator compounds in clinical trials that could provide potentially better options for many with CF.
Research Perspective
What gaps remain?
Researchers at this year’s North American CF Conference discussed the gaps in understanding and challenges that remain for people taking CFTR modulators.
Community Perspective
Why Sydney switched
Sydney Willig, a young adult with CF, shared why she decided to switch from Trikafta to Alyftrek.
Advocating for the NIH
How does the NIH's work benefit people with CF?
The NIH has funded basic, translational, and clinical research that has led to progress in CF including CFTR modulators.
How did we take action?
Beyond our longstanding advocacy for the NIH, we mobilized the CF community — including CF researchers — to engage with policymakers to protect the NIH's budget from significantly being cut.
- Explaining how NIH-funded research led to breakthroughs in CF and why it's critical to protect research to reach a cure for CF
- Joining a powerful coalition of patient advocate groups to urge Congress to reverse policy changes that jeopardized research being done toward cures for diseases including CF
Outcome
Your voices were heard
Congress passed a bill in early 2026 that secured full funding for the NIH, ensuring another year of science funding critical to making progress in CF.
Video
Why federal research funding matters
Hear from Foundation leaders and a mother of a child with CF as they share why federally funded research is critical to reaching a cure.
Program Area 02
Addressing
Today’s Challenges
Today’s Challenges
To best care for people with CF and their evolving needs, especially as people with CF get older, we are exploring new ways to lessen the burden of the disease. In addition, we are researching how to make CF easier to manage.
Personalizing CF Care
Partnering with the care team
As more people with cystic fibrosis are living well into adulthood, a wider range of CF experiences unfolds. We support CF care teams who work together with their patients to deliver the best and most appropriate care for their patients’ unique needs.
Making care and treatments more accessible
In 2025, we supported work that aims to make receiving care or doing daily treatments more accessible, which includes:
Reducing treatment burden
A study to inform whether people with CF taking modulators can ease their treatment burden by safely reducing certain daily treatments.
Supporting remote care
Research to see if collecting certain clinical samples at home for a remote appointment has similar results to collecting samples at a clinic visit.
Training specialty clinicians
Trainings for clinicians who specialize in GI, liver, and endocrine health on issues specific to cystic fibrosis.
Connecting broader care needs
A pilot program to partner primary care clinicians with CF care teams to address broad health needs.
Living Longer With CF
What changes as people with CF get older?
As many people are living longer with CF, they may face additional or more severe disease challenges, like CF-related diabetes, cancer, and advanced CF lung disease.
What we’ve done to better understand aging with CF
To better address the needs of older adults, we:
- Supported a trial evaluating the effectiveness and safety of using the insulin-only bionic pancreas, which could make it easier to manage cystic fibrosis-related diabetes
- Supported SPECTRUM, an observational study monitoring complications in people with cystic fibrosis-related diabetes
- Supported a study that determined colonoscopies are more effective for screening colorectal cancer in people with CF than stool-based tests
- Funded a group of lung transplant centers that are studying disparities in the lung transplant evaluation process
- Extended support to 12 grants researching chronic lung allograft dysfunction, the leading cause of lung transplant rejection
Community Perspective
Planning for the future
Brandon Duarte, 44, and Jennifer Kyle, 60, share their experiences aging with cystic fibrosis — from navigating an expanding care team of specialists to redefining what it means to plan for their futures.
Research Perspective
Proactive care as people age
At this year’s NACFC, researchers presented proactive and personalized care strategies to help people with CF as they grow older. This includes integrating preventive care and regular screenings into treatment plans and fostering an approach to health management that supports both physical and mental well-being.
Infections
Why are infections a major concern for people with CF?
Infections are caused by bacteria, viruses, and fungi, but in people with CF, thick, sticky mucus traps germs in the airways and allows them to thrive and multiply. This can lead to severe illness and hurt lung function.
Detecting and treating
Infections remain a challenge in CF, even as more people are taking modulators. They are becoming harder to diagnose for people who take modulators because they can’t easily produce mucus samples to test. CF infections are also resistant to many available antibiotics. To address these issues, in 2025, we:
- Invested in Owlstone Medical to develop a test designed to detect and monitor Pseudomonas infections from a person’s breath, a new method for people with CF who cannot produce sputum samples
- Invested in SNIPR Biome to develop a phage therapy to eliminate persistent Pseudomonas infections
- Supported the STOP PEDS trial evaluating two antibiotic treatment approaches for managing pulmonary exacerbations in children
Health Experiences and Outcomes
What are health experiences and outcomes?
Every person with CF experiences the disease differently, shaped by factors like life circumstances, geography, race, ethnicity, and identity — all of which can impact quality of life, disease severity, and access to care.
We’re funding projects across our portfolio to improve health experiences and outcomes for everyone with CF.
Advancing newborn screening best practices
Early diagnosis and intervention are essential to achieving the best health experiences and outcomes, however, there is no standard process across states, which can lead to delays in results or missed diagnoses. Our Newborn Screening Committee developed a guideline with recommendations to advance best practices in state screening programs. Since the guideline published, 10 states have improved aspects of their CF newborn screening process.
Strengthening CF care worldwide
Limited CF awareness, expertise, and health care infrastructure in some countries prevent people with CF from getting timely, appropriate care. Our global care project provides training and builds CF-specific capabilities to strengthen health systems worldwide.
Community Perspective
Accessing care close to home
Rose Williams, an adult with CF, shared how distance from her clinic and being denied treatment access have disrupted her daily life.
Research Perspective
Understanding health experiences and outcomes
Researchers at this year’s NACFC discussed the factors shaping health experiences and outcomes and showcased innovations in global care partnerships.
Community Blog
Mary's Cancer Journey After Transplant
“The first four years after my transplant were a whirlwind, I felt like I was jumping from one catastrophe to the next. But in between dealing with these complications, I went to Disney World with my family, celebrated my first lungiversary, climbed over 600 feet to Delicate Arch in Utah, traveled to Europe, renewed my vows with my wife to celebrate almost 25 years together, and bought a new house.”
Program Area 03
Empowering the
CF Community
CF Community
We are committed to partnering with people with CF and their loved ones to make progress across research, care, and navigating daily life with CF.
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Powering Our Mission Support for Everyday Life Taking Action
Powering Our Mission
Informing Our Work
People with CF and their families inform everything we do. Their experiences help us focus our efforts on essential priorities.
As we developed our next Five-Year Strategic Plan, we surveyed nearly 2,000 CF community members to learn what matters most. With that information and analysis of the Foundation's unique expertise and resources, we shaped our next five-year plan.
Community Priorities
Take a deeper dive into the community’s priorities
These themes reflect what community members said matters most and helped inform the Foundation’s next Five-Year Strategic Plan. Take a deeper dive into the community’s priorities.
90% or more of respondents said the Foundation should be:
- Funding research and drug development for a cure for CF
- Funding research and drug development for complications of the disease
- Advocating for access to high-quality, specialized care with elected representatives
- Funding CF care and supporting the CF care model
More than 250 adults with CF and their family members signed up for Community Voice this year, joining more than 2,000 other members for opportunities to share their experiences and expertise for projects focused on clinical research, menopause and perimenopause, men’s fertility and family planning, and more.
Support for Everyday Life
Support for Everyday Life
Compass is a lifeline for community members who need support with day-to-day challenges surrounding life with CF, like insurance issues. Compass case managers helped more than 800 families navigate open enrollment, including rising health insurance premiums for many, to choose plans that best suited their needs.
CF Circles
In its first full year, CF Circles connected more than 350 people with CF and loved ones to share discussions on topics important to their identities and experiences, including aging with CF and not taking modulators.
Taking Action
z
How does advocating for CF make a difference?
There is no more powerful, mobilizing force than the CF community when it comes to advocating to decision-makers about policies impacting the lives of people with CF. Each interaction with a lawmaker’s office is an opportunity to show the personal impact of policy decisions.
Protecting Access
The Foundation believes that all people with CF deserve access to affordable, high-quality CF care. We worked alongside the community — including people with CF, their families, clinicians, and researchers — on essential access issues.
We called on members of Congress to protect Medicaid, which provides health coverage to one-third of adults with CF and half of children.
We educated lawmakers about how the high cost of Affordable Care Act plan premiums may result in people making devastating tradeoffs to afford care.
Kirk Astroth, an adult with cystic fibrosis, and Brittney Householder, godmother of a teen living with CF, were appointed our national volunteer advocacy co-chairs. They stand at the forefront of advocacy and education campaigns that support people living with CF.
“By advocating, we pay tribute to the original cystic fibrosis families; they saw a need, spoke up, and refused to back down.”
Brittney Householder
“This is a critical time in our country for both science and research, so every effort to educate our elected officials about the importance of scientific advances toward a cure for cystic fibrosis is paramount.”
Kirk Astroth
State Wins
We advocated for policies locally that help people with CF access and afford their care, and in 2025 we:
Ensured strong funding for CF programs in several states including Pennsylvania and Michigan. In New Jersey, our advocacy resulted in the award of a full grant, enabling the program to restart its monthly nutritional stipends to patients.
Supported the passage of state copay accumulator bans in four additional states so that people with CF who receive copay assistance can count that support toward their deductibles.
Worked to improve state Medicaid coverage for CF therapies, including modulators, vitamins, and antibiotics.
The cystic fibrosis community ROSE UP, laced up, hiked, and cycled to chart a brighter future for those living with CF. Their commitment, creativity, and community-building are at the heart of every fundraising effort.
Bold Steps Toward a Cure
You make our mission possible
Your support is fueling progress toward a future without CF.
Thanks to our incredible supporters in 2025, we exceeded our multi-year Milestones III goal of raising $200 million to advance genetic therapies for cystic fibrosis. Co-led by Kate O’Donnell and Amy Barry, following the passing of campaign Chair-in-Memoriam Joe O’Donnell, Milestones III will help the Foundation advance innovative science as we work to cure CF.
Honoring a CF Trailblazer
The cystic fibrosis community mourned the passing of Doris Tulcin, co-founder of the Cystic Fibrosis Foundation. Doris shaped the Foundation as a volunteer, leader, and board of trustees chair for a career spanning more than seven decades. She was an unstoppable force and inspiration for volunteers trying to make a difference. More than 40 years after her fundraising campaign helped support the discovery of the CFTR gene, her impact is still felt today.
“When my daughter, Annie, was born, she was given a year to live … Look where we’ve come. Many people with CF are living so much longer today. But we cannot celebrate yet until every person with CF benefits from these discoveries.”
Doris Tulcin
Platinum
Gold
Silver
Bronze
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| KC Bryan White Chair | Teresa L. Elder Vice Chair | Kate O'Donnell |
| Michael L. Beatty, Esq. nonvoting, Leadership Council Chair | D. Paul Flessner | Eric R. Olson, PhD Vice Chair |
| Jessica H. Boyd, MD, MPH | Carole B. Griego, MD | Eric C. Schneider, MD |
| Michael P. Boyle, MD | Catherine C. McLoud nonvoting, Chair Emeritus | Steven Shak, MD |
| James (Jamie) R. Butler, II nonvoting, Advisor | Peter J. Mogayzel Jr., MD, PhD nonvoting, Pediatric CF Care Center Representative | Dodzie Sogah, PhD |
| Dominic J. Caruso | Paul A. Motenko | Eric J. Sorscher, MD nonvoting, Medical Advisory Council Chair |
| Louis A. DeFalco Vice Chair | David A. Mount Treasurer | Jennifer L. Taylor, MD nonvoting, CF Adult Care Center Representative |
| Elise Eberwein | Robert H. Niehaus Vice Chair | John S. Weinberg Executive Vice Chair |