social media feature pic jan 2017
JoinLiving With CFTreatments

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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 →
hearing loss
Living With CFRespiratory DiseaseTreatments

Risk of Hearing Loss from IV Aminoglycosides in Cystic Fibrosis

Cumulative exposure to IV tobramycin and amikacin, which are critical for treating cystic fibrosis infections, increases the risk of hearing loss. A study, “The cumulative effects of intravenous antibiotic treatments on hearing in patients with cystic fibrosis,” published last month in the Journal of Cystic Fibrosis discusses how IV tobramycin, …

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 →
pseudomonas2
GeneticsLiving With CFRespiratory DiseaseTreatments

Does Ivacaftor Affect Lung Bacteria in Cystic Fibrosis?

Ivacaftor has been shown to increase CFTR activity and lung function in people with Cystic Fibrosis and the G551D mutation, but until a recent study, scientists were not sure if ivacaftor changed the level of bacteria in the lungs. The results of a deeper study on ivacaftor have been published, …

READ MORE →
heart fibrosis
Living With CFResearchTreatments

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 …

READ MORE →
nu me
Living With CFTechnologyTreatments

A Day with Portable Genomics for Cystic Fibrosis management

  Using the Portable Genomics App   CFtechnology and Portable Genomics are proud to create a partnership using a new, customizable app! In the Digital Age, it is no surprise that apps are finding their way into the medical field. Technology is everywhere, so why not harness the power of …

READ MORE →
Miracle_Flights4
FinancialLiving With CFSupportTransplantsTreatments

Miracle Flights: free medically-related air travel for ill patients, including for Cystic Fibrosis treatment

Struggling to cover the cost of air travel to receive your medical care? Miracle Flights assists patients through free commercial air travel to obtain special medical care. Read more about this fantastic organization and how to apply below…   Blog article written in conjunction with Brooke Freeman, Community Outreach Officer …

READ MORE →
cigarette-666939_640
Living With CFResearchRespiratory DiseaseTreatments

CFTR Function and Cigarette Smoke

Scientists are looking at how the CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) potentiator, Ivacaftor, might be used in COPD, specifically chronic bronchitis. They found that cigarette smoking reduces CFTR activity in lung tissue, and that exposing the lung cells directly to a CFTR potentiator reverses this effect. While the vast …

READ MORE →
artificial_pancreas2
Living With CFTechnologyTreatments

(Cystic Fibrosis Diabetes) First FDA approved artificial pancreas and other 2016 Digital health highlights

The “What We Learnt in Digital Health in 2016” article (by Bertalan Meskó, MD, PhD) takes a look at the successes, failures and challenges in the field of digital health in 2016 and provides an interesting view on some current trends. The first FDA-approved artificial pancreas is mentioned (which may be of interest …

READ MORE →