In 2022, the community’s determination helped us achieve new milestones and fueled our mission for a cure for all. Read our annual report to learn more about our achievements this year, and about our continued work toward helping people with cystic fibrosis live long, fulfilling lives.
Dear Friends,
There is nothing like the determination of the cystic fibrosis community. The families who founded the Cystic Fibrosis Foundation demanded better lives for their children. That spirit is what has fueled our progress to date. It’s what helped pioneer the multidisciplinary care model and the development of treatments that led to a dramatic improvement in quality of life.
Because of you, individuals living with CF are building careers, starting families, and even planning for retirement. They are achieving dreams for themselves, not limited by their disease — dreams made possible by your unwavering commitment.
But there is still more work to do.
These advancements are tremendous, but transformative progress has not been felt universally across our community. Individuals with rare or nonsense mutations continue to eagerly await a treatment for the cause of their CF. Many others with CF continue to face challenges and systemic barriers that prevent them from reaching their full health potential, with a disproportionate number of those being people of color.
To achieve our mission of helping those with CF live long, healthy lives and finding a cure for every person with CF, we are funding more programs in our drug development pipeline than ever before.
And while we build our path toward transformative therapies for all, we continue to make progress with new medicines to treat the challenges people are facing today. Even though people with CF are living longer than ever before, we will never settle for less than all people with CF living their healthiest lives possible.
Our most important efforts could not continue to advance without the collaboration of the foremost experts on CF — those living with the disease. They are informing our initiatives in everything from genetic therapy clinical trial design to the development of clinical care guidelines. Their commitment, and that of our researchers, clinicians, and volunteers, strengthens our work and our resolve.
Our most critical work is ahead, but I am confident that together we will continue our remarkable progress and cure cystic fibrosis.
With gratitude,
Michael P. Boyle, MD
President and CEO, Cystic Fibrosis Foundation
We dream of a day when every person with cystic fibrosis can live without limitations caused by their disease. Until this is a reality, we will relentlessly pursue new treatments and ultimately a cure for CF.
Until it’s done, for everyone.
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As the leader in the search for a cure for cystic fibrosis, our team is unmatched in its CF expertise and innovative approach to advancing the world’s best science.
We are bringing together the brightest minds and most promising technologies to accelerate our search for a cure. Leading this charge is our new Chief Scientific Officer Steven Rowe, MD, a world-renowned CF researcher, particularly in nonsense mutations, who is bringing in more talent to strengthen our science bench in our search for new technologies.
A decade since the opening of our CF Foundation Therapeutics Lab, we have expanded the physical footprint so that collaborators and startup companies can work alongside us on genetic therapies. The first to join the lab is Carbon Biosciences, which is working on a cutting-edge approach to deliver a functional CFTR gene directly into the lungs.
In July, we held our first Golden Ticket Competition to bring early-stage researchers developing genetic technologies into CF. In collaboration with University of California, Berkeley’s Bakar BioEnginuity Hub, we awarded AVECRIS Pte Ltd and Nosis Biological Sciences one year of office and lab space at Bakar Labs.
In 2022, the CF Foundation invested $265 million in research and care.
I’m part of the 10% of CF patients who cannot apply for modulators yet, but the Foundation and scientists have done such an amazing job already that I’m positive that with a little more support and time, there will be a cure for all CF patients.
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Our Path to a Cure is clearer than ever as we invested in more promising genetic therapies for CF, which have the potential to work for all people regardless of their mutations. We continue to forge parallel paths, funding many different approaches to one day reach a cure.
4D Molecular Therapeutics released early, yet promising, data for its inhaled genetic therapy. Watch Dr. Deepika Polineni present these findings at the North American CF Conference in Philadelphia.
Carmine Therapeutics is developing a method to deliver a gene therapy that harnesses a natural process in the body that is unlikely to trigger an immune system response.
SalioGen Therapeutics is developing a novel Gene CodingTM approach designed to turn on, turn off, or modify the function of any gene in the genome.
The Foundation funded 81 studies — investing more than $67 million in genetic therapies and treatments for people with rare and nonsense mutations.
The Foundation’s Drug Development Pipeline comprises potential treatments for the root cause of CF and its many complications, including mucociliary clearance, inflammation, infection, and nutrition/GI.
drug development pipeline
We’re making astounding progress as people with cystic fibrosis live longer than ever before. But as people live longer, we must address the complications and challenges they face throughout their CF journey.
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When the CF Foundation was founded nearly 70 years ago, children with CF rarely lived to 5 years old. Today, because of the bold determination of parents and families to alter the trajectory of CF, there are more adults living with CF than ever before, with many helping to inform the Foundation’s priorities.
The median predicted age of survival for a person with CF born today is now 56 years — nearly 20 years longer than just a decade ago. The CF population in the United States is close to 40,000 — a marked increase over the past decade due in large part to people living longer.
KC White, an adult with cystic fibrosis, succeeded Catherine C. McLoud as chair of our Board of Trustees. This is the first time a person with CF has led our board — an exciting milestone to celebrate as more and more people with CF are no longer defined by their disease.
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Modulators remain critical tools in treating many with the disease, especially when started early in life. We are continuously learning about their long-term impact and making investments in new modulator treatments.
We invested $5 million in Sionna Therapeutics, a company focused exclusively on developing CFTR modulators targeting a part of the CFTR protein where the most common CF-causing mutation, F508del, occurs.
To evaluate whether Trikafta® could help ease treatment burden — a common complaint in CF care — we funded the SIMPLIFY study. Designed in partnership with CF community members, SIMPLIFY found that participants were able to safely stop taking one of the two common CF medications without negatively affecting their health.
Members from Community Voice, a virtual program for the CF community to share their expertise, participated in 19 projects to enhance the design of CF research studies.
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After exceeding our $100 million Infection Research Initiative goal nearly two years early, our support for infection research remains unwavering. We are determined to support new approaches to fighting infections to give people with CF more treatment options.
We awarded up to $5 million to BiomX in early 2022 to develop phage therapy for Pseudomonas infections in people with CF. Phage therapy uses viruses that infect bacteria to selectively target and kill specific microbes.
We invested an additional $4.85 million in Aridis Pharmaceuticals to complete a Phase 2a trial investigating the use of an inhaled form of gallium. By replacing iron — a nutrient that bacteria need to grow — with gallium, the bacteria may starve and die off.
The bipartisan PASTEUR Act aims to address many obstacles in antibiotic development. Thousands of members of the CF community advocated for its passage by sending messages and telling their stories to their elected officials at March on the Hill and Teen Advocacy Day. Though the act did not pass in 2022 before the end of the 117th Congress, the CF community has been mobilizing in support of the act ahead of — and since — its reintroduction in the 118th Congress in April 2023.
The necessity of antibiotics for those with CF is a form of gambling that we could never have prepared for. Being diagnosed with nontuberculous mycobacterial infection, my care team and I have often faced the impossible coin flip of risking my lungs or my hearing. But, CFers are strong, we are resilient, and we are adaptable.
399
research studies into CF-related complications
40
multicenter clinical trials
168
pharma or biotech companies evaluated
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Cystic fibrosis doesn’t just impact the lungs. It’s a full-body, progressive disease. While we celebrate the achievements people with CF have reached, there is work to do to make living with CF more manageable.
Our newly launched Mental Health Working Group and expanded Sexual Health, Reproduction, and Gender Research Working Group will identify and prioritize research topics in these areas. Each group received new applications for membership from clinicians and CF community members.
As people with CF are living longer, their health needs have grown more complex. To account for this, and the changes made during the COVID-19 pandemic, a Journal of CF commentary outlined how the CF care model can be more adaptive and personalized, advance health equity, and better connect clinicians and their patients.
Lung transplantation remains a viable treatment for people with CF, though there has been a marked decline in CF transplants. We awarded eight research grants focused on early detection and diagnosis of chronic lung allograft dysfunction, the leading cause of lung transplant failures, and one of the most difficult to address.
CF Foundation Compass case managers are making a difference in the lives of people with CF and their families.
$1.3M
saved for people with CF and their families
12,500+
requests fielded for assistance with insurance, financial, legal, and other issues
125
requests in Spanish, with more than half from first-time callers
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While many people with cystic fibrosis are living fuller, healthier lives, people of color face additional challenges that affect their health. To help address these health disparities and better support all people in the CF community, the CF Foundation reaffirmed its commitment to equity, racial justice, diversity, and inclusion.
People of color with CF are more likely to experience poorer health outcomes. The Foundation is working with the community on efforts to address health inequities
The Foundation collaborated with CF community members and multidisciplinary subject matter experts to identify ways to address inequities Black people with CF face, anticipating that learnings could benefit and reach other groups. They finalized recommendations in two key focus areas: health equity and outcomes and diverse workforce development (with recommendations in a third focus area, community, to follow in 2023).
All babies in the U.S. have been screened for cystic fibrosis since 2010. But, some babies — particularly infants of color — are at risk of missed or delayed diagnoses because of inconsistent testing practices from state to state. Alongside clinicians and parents of children with CF, we established a nationwide newborn screening initiative to assess and improve timeliness and equity in the newborn screening process.
To better engage and educate broader audiences on work impacting health equity, we are creating more resources in Spanish, including two webinars on genetic therapies by and for native Spanish speakers, and live audio Spanish translation and small-group breakouts for Spanish speakers at community conferences.
It’s because of the CF community that we have made such outstanding progress. The community’s commitment is seen every time they walk, advocate, provide insights and expertise, and most of all, support their loved ones with CF.
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The Foundation's progress is powered by you. When we work together, there is nothing we can't do.
Milestones III: Driven by a Dream aims to raise $200 million by 2024 to accelerate our work to find a cure. Led by longtime champion of the Foundation Joe O'Donnell, whose son, Joey, had CF, the campaign has already raised more than $120 million.
Pivoting to virtual events allowed us to provide people with CF more opportunities to participate. Since the pandemic, we’ve held several hybrid virtual and in-person events — driving our science forward at the North American CF Conference, celebrating our resilient community at the Volunteer Leadership Conference, and making our voices heard on Capitol Hill at Teen Advocacy Day.
The Foundation awarded four Impact Grants of up to $10,000 this year to projects supporting different CF journeys — from initial diagnosis through adulthood. Since awarding the first Impact Grants in 2016, the Foundation has awarded more than $845,000 to 35 community-led programs.
Our amazing volunteers, donors, and corporate champions helped us raise $100 million in net revenue.
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Virtual connections remain core to our efforts to continue to build community among people with CF and their loved ones.
1,000+
people with CF and family members connected with peers at community conferences and through peer support
24%
of the 200 new members who joined Community Voice in 2022 identify as people of color, bringing more underrepresented voices and diverse perspectives to our work
2,000
people with CF, family members, friends, clinicians, and researchers participated in ROSE UP to raise money and awareness through creative, meaningful acts.
As a 10-year-old, I was so ashamed of my CF. The symptoms of this disease feel so gross, unlikable, and, above all — a detriment to fitting in. Today, I’m proud of these 40-year-old lungs. I’m proud that my body survived all the intestinal surgeries and breathing treatments. And I’m proud that I can show up for my disease, for others with CF, and for friends experiencing chronic illness.
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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 |
Carole B. Griego, MD | Eric C. Schneider, MD |
| Michael L. Beatty, Esq. nonvoting, Leadership Council Chair |
Catherine C. McLoud Immediate Past Chair |
Steven Shak, MD |
| Jessica H. Boyd, MD, MPH | Peter J. Mogayzel Jr., MD, PhD nonvoting, CF Care Center Representative |
Eric J. Sorscher, MD nonvoting, Medical Advisory Council Chair |
| Michael P. Boyle, MD | Chad T. Moore | Jennifer Taylor-Cousar, MD nonvoting, CF Care Center Representative |
| James R. Butler, II nonvoting, Advisor |
Paul A. Motenko | Doris F. Tulcin nonvoting, Chair Emeritus |
| Dominic J. Caruso | David A. Mount Treasurer |
John S. Weinberg Executive Vice Chair |
| Louis A. DeFalco Vice Chair |
Robert H. Niehaus Vice Chair |
Paul W. Whetsell |
| Teresa L. Elder Vice Chair |
Eric R. Olson, PhD Vice Chair |
Corporate Officers
| President and CEO
Michael P. Boyle, MD |
Executive Vice President and Chief Operating and Financial Officer
Irena Barisic |
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View the CF Foundation’s condensed financial information.