September/October Update

We have invested an additional $3 million in ReCode Therapeutics to provide further support for an ongoing Phase 2 clinical trial of its messenger RNA (mRNA) therapy. This therapy has the potential to help all people with CF, including those with rare and nonsense mutations who do not benefit from modulators, such as Trikafta.  

Learn more about our investment >>

SpliSense reported positive results from its ongoing, early Phase 2 clinical trial for its RNA-based drug for people with CF who have the splicing mutation, 3849+10kb C-to-T. Data from the first two groups in the study showed improvement in lung function in the majority of the people with CF who received the antisense oligonucleotide therapy. No safety issues were reported.

We are investing up to €6.5 million ($7.6 million) in SNIPR Biome to help develop a phage therapy to eliminate persistent Pseudomonas infections in people with cystic fibrosis. SNIPR plans to use gene editing tools to engineer phages — a type of virus that targets bacteria — to improve their ability to kill bacteria.  

Explore the details >>

We are investing $350,000 in MiDx to develop a urine test to detect Pseudomonas infections in people with CF. This investment underscores our commitment to advancing detection and diagnostic tools that do not rely on sputum, which can be difficult to collect — especially from children and adults taking modulator therapies that reduce mucus production. This marks our third investment this year in Pseudomonas detection technologies, which also includes: a $2.3 million investment in Owlstone Medical to develop a breath test and a $500,000 investment in Pearl Diagnostics to develop a urine test. 

Managing pain associated with cystic fibrosis is an important part of life for many people with the disease. Learn how to talk with your care team about the pain you have and ask about developing a plan that helps you manage it. 

Learn about managing pain >>

We recommend everyone with CF who is eligible should get their flu, COVID-19, and RSV vaccines. Those who live with — or have close contact with — people with CF should be vaccinated, too. Although vaccines cannot prevent all cases of flu, COVID-19, or RSV, they can prevent or reduce the severity of these infections. 

Learn more about protecting yourself from respiratory illnesses >>

Join the Health Outcomes of Parents with Cystic Fibrosis (HOPeCF) study to help CF care teams better support people with CF during early parenthood. The study is recruiting people with CF who are new parents to help understand if, when, and how parenthood affects lung function, mental health, stress, and other CF-related health outcomes. Study participants will complete 12 online surveys over a 5-year period and receive $30 per completed survey. Researchers also will collect data from participants' medical records.

Interested? Learn more by completing this brief form >>

Have questions about clinical trials and how to find ones relevant to you or your loved one? Contact Katie Howe, the Foundation’s clinical trial navigator.

Don’t miss your chance to hear the latest advances in CF research and care at the annual North American Cystic Fibrosis Conference (NACFC). The free livestream includes three plenaries, as well as six sessions selected by members of the CF community. The livestream will be interpreted live in Spanish. Can’t join us live? Recordings of many NACFC sessions will be posted on YouTube soon after the conference — no registration required.

Register for the NACFC livestream >>

We also will be hosting a Post-NACFC Highlights Webinar from 7-8 p.m. ET on Dec. 10. Two researchers will discuss the top research and care news from the conference and answer your questions.

Register for the post-NACFC Highlights Webinar >>

CF Circles is a space for adults with CF — and sometimes caregivers — to gather virtually for hourlong small-group discussions with people who understand the ups and downs of living with CF. Registration has opened for these upcoming sessions focusing on:

A. Your go-to source of cystic fibrosis news. From new studies to emerging treatments and health resources, we’re here to keep you up-to-date, empowered, and ready to take charge of your health.

B. Stay informed. Empower yourself. From new studies to emerging treatments and health resources, we give you the information and tools to take charge of your health.