The Cystic Fibrosis Foundation has launched a series of videos aimed at helping cystic fibrosis patients get fit. The videos are aimed at different age groups and look at age-appropriate ways for patients to exercise and build their strength. MORE: 14-year-old Brayden Merrill is inspiring fellow cystic fibrosis patients to exercise…
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Fundraising is important to cystic fibrosis organizations like the U.K.’s Cystic Fibrosis Trust. The money helps support research into new therapies and possible cures, along with offering services to cystic fibrosis sufferers. There are many different types of fundraising events that appeal to the masses but some people want to really challenge…
A wristband has been designed to help doctors detect diseases like cystic fibrosis and diabetes. The wearable device has a mechanism that can determine the levels of sodium and chloride in a person’s sweat — two properties which, if elevated, can indicate cystic fibrosis. MORE: Four common misconceptions about cystic fibrosis According…
James and Charles Dunlop had already done plenty for the cystic fibrosis community as the founders of Ambry Genetics. Their diagnostics company was the first to do a full CF gene analysis that looked at the entire CFTR gene in 2001, which includes about 1,300 known mutations. The brothers…
Dr. Gwen A. Huitt is an infectious disease doctor at National Jewish Health with a special interest in mycobacteria, bronchiectasis, and cystic fibrosis. Here, she talks to us about the hidden dangers of a major medical issue she feels doesn’t receive the attention it needs in the CF community…
Hanging from the wall of Vertex Pharmaceutical’s Boston office is a massive set of sculpted lungs — pink and red, branching out with wide airways. The sculpture (made of foam, corrugated plastic, and glitter) is titled “I Want More Air!” As creators of game-changing CF drugs Kalydeco and…
The Evolution of CF Treatments
Cystic fibrosis care has seen such rapid advances that the average CF patient has likely seen a dramatic evolution in treatment strategies in their lifetime. Here are some of the biggest milestones that shaped modern-day CF treatments. (Dates are when these therapies and ideas were adopted. Many are no longer…
Lung-Themed Watches Sold to Benefit CF Research
Emily Lyons hasn’t stopped thinking about her sister Julia since she passed away from cystic fibrosis in 2011 — and she doesn’t want to. So, she created JWLS, a timepiece company with a set of lungs as its logo. Emily donates a portion of proceeds from watch sales…
In their minds, cystic fibrosis patients are cycling through an African safari, exploring the animals and environment. In reality, they’re sitting atop a bike machine with a thick, black visor engulfing half their face. The University Hospital Llandough in the U.K. is…
“There was a girl I was very interested in,” says Gunnar Esiason. “We were hanging out and, it’s a long story, but my feeding tube exploded on her.” “I was dating this guy, and he saw my port-a-cath and goes, ‘Oh my God, are you ok?…
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