- New modulator Alyftrek approved
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Study results on Trikafta and GI symptoms
- Funding for research into lung transplant complication
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CF Foundation Responds to NIH Funding Cuts
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The CF Foundation is opposed to the recent decision by the National Institutes of Health (NIH) to set the reimbursement rate for indirect costs — funding which covers expenses such as equipment and lab space — to 15%. The rapid implementation and scale of these cuts will significantly hamper research institutions and impede critical scientific advances. We remain steadfast in our commitment to ensuring the continuation of critical CF research by supporting the CF research community and the NIH.
Read CF Foundation’s statement »
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FDA Approves Alyftrek, Expands Label for Trikafta
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In December, the U.S. Food and Drug Administration (FDA) approved the new triple-combination modulator Alyftrek (vanzacaftor/tezacaftor/deutivacaftor) for people with CF ages 6 and older who have a mutation that is eligible for Trikafta or one of 31 rare mutations not previously approved for a modulator.
The FDA also approved the expansion of Trikafta (elexacaftor/tezacaftor/ivacaftor) to people with CF ages 2 and older who have at least one of 94 rare mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.
Review the list of eligible mutations »
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Clinical Trial Starts for mRNA Therapy
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Study: Improvement in GI Symptoms for Those on Trikafta
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Gastrointestinal (GI) symptoms seemed to improve in adults with CF during the first 1.5 years after starting Trikafta, however, those benefits seem to wane with longer term use, according to a study in the Journal of Cystic Fibrosis. Study authors were unsure whether this is because of more missed doses of Trikafta or pancreatic enzymes over time, a decrease in Trikafta’s effects on GI symptoms, or other reasons. They concluded that more research is needed on the effects of modulator therapies on GI symptoms.
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Reduce Your Risk for Colon Cancer
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March is Colorectal Cancer Awareness Month. Adults with cystic fibrosis face a colorectal cancer risk that is 5–10 times greater than the general population — and even higher for people with CF who receive a lung or other organ transplant. Colonoscopies are the most effective screening method and need to be started at age 40 for people with CF and often at age 30 for those who have had a transplant (depending on when the transplant occurs).
Learn more about colorectal cancer and how to reduce your risk »
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Funding to Address Lung Transplant Complication
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We provided nearly $4.5 million in funding to research projects focused on addressing chronic lung allograft dysfunction (CLAD), a post-lung transplant complication related to chronic organ rejection. CLAD is the leading barrier in long-term survival in people with CF post-lung transplant. Among other things, the projects will focus on early detection and diagnosis of CLAD.
For more information on lung transplants, please visit the newly updated lung transplant section of our website. The content includes everything from finding a lung transplant center to surgery and recovery.
Read more about lung transplantation »
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Educational Videos Now Available in Spanish
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Several medical animation videos covering a range of CF topics are now available in Spanish. These translated videos feature Spanish narration, onscreen text, and closed captions. Check out the following videos on the Foundation’s YouTube channel:
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CF and CF Treatments — A Look Inside the Lungs: This series of four videos explains how CF affects the lungs and explores several treatments, including inhaled antibiotics, mucus thinners, and airway clearance techniques. (Watch in English ǀ Watch in Spanish)
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Emerging Genetic Therapies for CF: This video explains how genetic therapies — including mRNA therapy, gene therapy, and gene editing — would work in the lungs of people with CF. (Watch in English ǀ Watch in Spanish)
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Meet the Clinical Trial Navigator Video
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Do you have questions about clinical trials and how to find ones relevant to you or your loved one? If so, Katie Howe, the Foundation’s clinical trial navigator, can help. In this video, she provides a brief overview of how she works with people interested in a CF clinical trial as well as her contact information.
Watch now >>
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Join CF Circles Discussion Groups
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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:
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Stay connected with the CF Foundation via our social media channels or visit cff.org/news for the latest updates.
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