Orkambi Study On Children Age 6-12 With DDF508: Cystic Fibrosis Treatment
Results are in from a 24-week study of Orkambi (lumacaftor/ivacaftor – a medication used in cystic fibrosis treatment) in 58 children with cystic fibrosis age 6-12 with two copies of the F508-delta mutation. Researchers were looking to examine the safety and efficacy of the CFTR potentiator on this age group and …
University of British Columbia studying B-cepacia with some success!
Burkholderia cenocepacia has been a very hard to treat bacterial infection for our Cystic Fibrosis community. Some of you may remember a member of our community, LightnLife…Lauren Beyenhoff. She was a trained scientist and an active member of our site a few years ago. I remember our days on Second …
Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656
Vertex Pharmaceuticals recently purchased the Phase 2 cystic fibrosis potentiator drug CTP-656 from Concert Pharmaceuticals. The deal is estimated to be worth $250 million dollars. CTP-656 is intended to be a longer-acting, once daily version of Vertex’s drug ivacaftor, which aims to restore CFTR function in treatment for Cystic Fibrosis. …
Respiratory Health and Air Pollution
The impact of small particle air pollution on the lower airways (lungs) has long been studied, but now scientists have evidence of its negative impact on the upper sinonasal airways as well. The World Health Organization’s recommendation for small particle air pollution (PM2.5) is that it not exceed an average …
Research on CF and Exercise in Cystic Fibrosis treatment
Significant research, both recent and decades old, shows that exercise helps people with CF. Yet it’s not always a part of a person’s Cystic Fibrosis treatment regimen. Here are some facts that may convince you to exercise more with the the guidance and approval of your CF team. “Exercise can …
Evolution of a New App for Cystic Fibrosis management
Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …
Pulmozyme May Extend Lives of People Without Cystic Fibrosis
Pulmozyme might be able to extend the lives of people who don’t have CF according to a recent article in Science Daily, “Fighting age-related fibrosis to keep organs young.” Since it was approved by the FDA in 1993, Pulmozyme (dornase alpha or DNase) has been used by many people with …
Radio Interview: CRISPR Gene Editing (relevant to Cystic Fibrosis genetics)
“There has never been a more powerful biological tool or one with more potential to both improve the world and endanger it.” For an in-depth look at the progress being made and the potential of CRISPR, the gene editing tool, listen to this radio interview on National Public Radio. Cystic …
Portable Genomics and CFTechnology.org Partnership for Cystic Fibrosis
From PRNewswire Portable Genomics and CFTechnology.org have entered into a partnership to enable cystic fibrosis patients to better collect, manage and share important biometrics with caregivers, researchers and the pharmaceutical industry News provided by Portable Genomics Jan 17, 2017, 06:04 ET SAN DIEGO, Jan. 17, 2017 /PRNewswire/ — Portable Genomics …
Cystic Fibrosis Lung Microbiome: Diversity and Lung Function
The article, The Lung Microbiome and Airway Disease, published September 2016 in the Annals of the American Thoracic Society, describes various research studies that analyzed the relationship between the lung microbiome and airway disease in Cystic Fibrosis. Scientists can now better examine microbial communities in the lungs, and they are …