charlesdarwinImogene
Living With CFNews & EventsResearchSupportTechnology

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

READ MORE →
Image by Evgenios Metaxas MD MSc, Pulmonologist http://creativecommons.org/licenses/by-sa/3.0
Living With CFResearchRespiratory Disease

Home Monitoring vs. Traditional Care in CF: Year-Long Study Results

A study of home monitoring vs. traditional cystic fibrosis care in 267 patients age fourteen and older showed that after a year, FEV1 decline is similar in both models, though exacerbations are detected earlier in the home monitoring group. Home monitoring consisted of twice weekly electronic logging of spirometry and …

READ MORE →
LCI image small
Clinical TrialsLiving With CFResearchRespiratory DiseaseTreatments

Lung Clearance Index Improved in Children Ages 6-11 on Ivacaftor/Lumacaftor

Ivacaftor/Lumacaftor Improves Lung Clearance Index Score In Children A new phase 3 study, led by The Hospital for Sick Children at the University of Toronto, Canada, has been completed on the CF treatment ivacaftor/lumacaftor in children ages 6-11 with two F508-del CFTR mutations. In a group of 206 children from …

READ MORE →
Indrepta
Alternative MedicineNutritionResearchUncategorized

Personal Indrepta Results

I wanted to report the latest news we are seeing with my daughter using Indrepta. She is 19 years old and is DDF508. She is home for the summer and has been away the last year at university.  She has had to maintain her CF regimen by herself. Over the …

READ MORE →
graphic by By Lbudd14 (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
Living With CFResearchRespiratory DiseaseTreatments

Outcomes and Tolerances in Cystic Fibrosis Treatment Lumacaftor/Ivacaftor

Last month, the results of a study were published that looked at the progress and side effects of the cystic fibrosis treatment lumacaftor/ivacaftor in 116 people with CF during a year after starting the medication. 46 (39.7%) people reported side effects related to lumacaftor/ivacaftor, and of the side effects, 82.2% …

READ MORE →
The yogurt and kefir milk in the picture are lowfat but other brands do carry whole or full-fat versions.
Gastrointestinal DiseaseLiving With CFNutritionResearch

Full-Fat Fermented Dairy May Cause Less Inflammation Than Regular Dairy

In the cystic fibrosis diet, dairy products are often used to reach high-calorie targets, and new research has shown that it may be beneficial to focus on full-fat fermented dairy rather than regular dairy, because full-fat fermented dairy may cause less cardiovascular inflammation. A study published in the British Journal …

READ MORE →
Clinical TrialsResearchRespiratory DiseaseTreatments

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 …

READ MORE →
hard to treat Burkholderia cenocepacia
Living With CFResearchRespiratory Disease

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 …

READ MORE →
concert pills
Living With CFNews & EventsResearchTreatments

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. …

READ MORE →
pollution chimney-324561_640
Living With CFResearchRespiratory Disease

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 …

READ MORE →