March/April Update

Highlights

In case you missed it, you can watch the recording of our latest webinar on genetic therapies. Kara Foshay, PhD, and Heather Hathorne, PhD, share an overview of genetic therapies, starting from the basics, and discuss genetic therapy clinical trials, including what participation in a clinical trial may entail.  

Watch now >>

A webinar on the same topic will be held tonight in Spanish at 7 p.m. ET. All registrants will receive a link to the recording after the event.

Federal health and science agencies play critical roles in helping people with CF manage daily life and fostering the innovation needed to find a cure for all. The Foundation voiced deep concerns over how the abrupt nature and scale of layoffs at the NIH, FDA, and other agencies will undermine safety-net programs that are lifelines for many patients and have a detrimental impact on advancements in CF treatment and care now and for years to come.

Are you living with cystic fibrosis but not on CFTR modulators? The REACH study is actively enrolling participants like you to share health info and blood samples for research. By participating, you can help shape the future of CF treatment for people with CF who don't respond to current modulator therapies. 

Participants will receive compensation and travel costs will be covered. Plus, you’ll get a home spirometer and could join specialized studies focused on lung function and blood cells. 

Join the effort to improve CF care and treatment. Your participation could make a difference!

Other studies that are enrolling: 

The International Journal of Neonatal Screening recently published recommendations for CF newborn screening. The guideline includes seven recommendations covering best practices related to testing, mutation analysis, genetic sequencing, and notification of results. The guideline represents a significant milestone of the Foundation’s Newborn Screening Initiative, a multi-year effort to advance CF newborn screening and achieve better health outcomes for all babies born with the disease, regardless of background.   

Read more about our newborn screening recommendations >>

Modulators Improved Lung Function in Pregnant People With CF 

People with CF who were pregnant and using modulators, such as Trikafta, had improvements in lung function, while those who did not use modulators experienced a decline in lung function, according to a study published in the journal Chest. Researchers analyzed data from 307 pregnancies between 2010 and 2021. 

Submit Comments on Sexual and Reproductive Health Issues 

We are seeking community input on a draft position paper that covers sexual and reproductive health in people with CF, including care delivery, birth control, pregnancy, fertility, and CFTR modulator therapy exposure while pregnant or breastfeeding. When finalized, the position paper will provide guidance to the CF care center network and the community on these topics. All people with CF and families are invited to review the draft position paper and share feedback through April 23 at 5 p.m. ET. 

Read the paper and submit your comments >> 

New Web Page Highlights Research 

Research Into Sexual and Reproductive Health highlights new and ongoing research to address the issues and concerns experienced by people with CF related to pregnancy, fertility, parenting, and more.

Annual Report on Advanced Lung Disease and Transplant Is Available 

The 2024 Advanced Lung Disease and Transplant Year in Review covers the accomplishments of our Advanced Lung Disease and Lung Transplant Program. Updates include the publication of a checklist that can help people keep track of needed care after a transplant, a webinar on how CF and transplant teams can coordinate care after transplant, and a workshop for researchers on designing lung transplant clinical trials. 

Read the report >>

Join Virtual Events 

Donate Life Month 

April is National Donate Life Month, which aims to increase awareness about eye, tissue, and organ donation and transplantation and to encourage people to register to donate their organs.

Don’t miss ResearchCon, a virtual event that allows participants to learn about and discuss CF-related science and care alongside others living with and studying the disease. Participants can ask questions and use the information to better advocate for themselves, their loved ones, or their patients. Topics include gastrointestinal symptoms and a first-person account of participating in a genetic therapy clinical trial. 

Join us for ResearchCon! >>

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