GeneticsLiving With CFResearch

When a Bad Animal Model is Good: Cystic Fibrosis

A “good” animal model is one that has the same symptoms of a disease that we do, right? Not always. Sometimes we can actually learn more when an animal is not a perfect model; their good health can reveal new points of intervention. That’s the case for cystic fibrosis (CF), …

GeneticsLiving With CFNews & EventsResearch

SuperHero DNA

Study finds individuals immune to severe diseases. A new study has found that certain people’s genes have evolved in such a way that they are immune to certain severe inherited conditions. The study involved the analysis of previously collected DNA sets totaling 589,306 genomes from around the world with researchers hoping …

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Survey of Cystic Fibrosis Patients by GeneFo

As reported on the website Cystic Fibrosis News Today,GeneFo, the online platform for organizing different chronic disease communities, surveyed 2,400 people with Cystic Fibrosis. The questions they asked included: How are you feeling today? Depressed (39%) and Tired (34%) were top answers. What is your preferred calorie booster? Meat (37%) …

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The Importance of Treating Depression in People with Cystic Fibrosis

Depression can be a difficult subject to talk about, but it is important to be aware of the increased prevalence of depression in people with cystic fibrosis and other chronic health conditions, and to try to understand how depression, physical health, and general well-being are interrelated. In 2007, five doctors and …

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ExerciseLiving With CFResearch

Cystic Fibrosis: Three pilates exercises that may increase breathing strength

People with Cystic Fibrosis often suffer from air trapping and hyperinflation of their lungs. Air trapping is an abnormal retention of air. It can occur because the lungs lose elasticity and air doesn’t escape, and because mucus and inflammation obstruct exhalation. The trapped air can then cause the lungs to …

Living With CFNews & EventsResearch

Surprising Benefits from CF Research

CF Research May Help Agriculture Cystic Fibrosis is often referred to as an orphan disease i.e. research benefits a relatively small portion of the general population. But here is a serendipitous situation in which CF research may help agriculture on a large scale. A graduate student at the University of …

AdheranceLiving With CFResearch

Dr. Warren Warwick, The Bell Curve

The Bell Curve Dr. Warwick has made a study of what it takes to do better than everyone else.  He will be missed by the CF Community! What happens when patients find out how good their doctors really are? BY ATUL GAWANDE Every illness is a story, and Annie Page’s …

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Alternative Medicinefeatured_memberLiving With CFResearch

Sharktank: Jim Caldwell

My name is Jim Caldwell and I would like to introduce myself to this group. I am the president of another cystic fibrosis group called Sharktank Research Foundation (sharktank.org). I’ve been involved with Sharktank since 1999. I began studying cystic fibrosis seventeen years ago through Sharktank, shortly after my daughter was …

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GeneticsLiving With CFResearchTreatments

Trial results of Ivacaftor in children ages 2-5

Results are out from a two part study involving children ages 2-5 with at least one gating mutation trying Ivacaftor. From the Lancet Respiratory Journal, 20 January 2016 Ivacaftor has been shown to be a safe, effective treatment for cystic fibrosis in patients aged 6 years or older with a …

GeneticsLiving With CFResearchVideo

Genome editing with CRISPR-Cas9

This video explains how research in genome editing may help treat genetic diseases like CF in the future.