May and June Update

For the first time, our annual Patient Registry Highlights Report is now interactive, making it easier to explore trends in cystic fibrosis health data from nearly 34,000 participants.  

Explore the report >>

One of the key facts shared in the Patient Registry Highlights Report is the median predicted age of survival. According to 2024 Registry data, the median predicted age of survival for people with cystic fibrosis born in the U.S. between 2020-2024 has increased to an estimated 65 years. At the same time, we realize that this longer lifespan doesn’t represent the experience of everyone with CF. We also know that quality of life — and not just quantity — really matters. That’s why we’re working harder than ever to develop transformative treatments for all people with cystic fibrosis and support quality care across the CF care center network. 

Learn more about what this prediction means >>

Sionna Therapeutics, which has been testing multiple CFTR modulator candidates, announced it is moving the compound SION-719 into a Phase 2a study later this year to test its effectiveness. Another compound, SION-451, will continue being tested in Phase 1 trials. Both compounds target the NBD1 region of the CFTR protein where the most common CF mutation, F508del, is found.

We are providing $5 million in funding to the Cleveland Clinic to continue to serve as the Cystic Fibrosis Lung Transplant Consortium Biorepository Coordinating Center until 2030. The center has been collecting biological specimens and clinical data after lung transplants to enable future research studies that can investigate the causes of and potential treatments for chronic lung allograft dysfunction (CLAD). CLAD is one of the most common post-transplant complications and a leading cause of death post-transplant. 

Learn more about the Lung Transplant Consortium >>

We issued a statement opposing proposed cuts to Medicaid that would affect people with CF. Nearly 40% of people with cystic fibrosis rely on Medicaid for some or all of their health coverage.  

Read the Foundation’s statement >>

We all need medical devices to deliver accurate results. In CF care, that includes pulse oximeters, which measure oxygen levels in the blood. In a letter to the FDA, we provided comments on the agency’s draft guidance for improving pulse oximeter readings, which may disproportionately give inaccurate readings for people with darker skin pigmentation.  

Read the Foundation’s letter to the FDA >>

Share Your Voice: Do you want to share your thoughts and opinions about CF research and care? Watch this 2-minute video to learn how you can contribute to research and care decisions through Community Voice. (Also available in Spanish)

Calling All Students! Get closer to the science that’s changing lives through the CF Foundation College Program presented by Tomorrow’s Leaders. Undergraduate, post-graduate, and medical students are encouraged to register for this week-long virtual experience where you can explore cutting-edge CF science, connect with researchers, and gain unique access to the 2025 North American Cystic Fibrosis Conference.

CF Circles: Adults with CF can register now for our next virtual CF Circles session July 15 which will focus on navigating the financial impact of CF, such as paying for health care, dealing with changes to income and employment, or making financial tradeoffs.