Cystic Fibrosis News Today has covered news of the latest treatments, events, clinical trials, and research updates in cystic fibrosis on a daily basis throughout the past year. As 2015 comes to an end, here are 10 articles most widely read by Cystic Fibrosis News Today readers, each with a brief summary of the developments that made them of such interest to CF patients, caregivers and their loved ones.
No. 10 – “CF Patients Could Benefit From New Lung Infection Detector Nanodevice, Wearable Tech Prototypes”
A low-cost, disposable breath analysis device that a person with cystic fibrosis could pair with a smartphone to quickly detect a lung infection may soon be a reality. Thanks to a nearly $1.3 million grant from the National Science Foundation, engineers at the University of California, Irvine, are continuing to refine nanotechnology to make a CF device that works much like the one used by police to gauge a driver’s blood-alcohol level, and may potentially develop similar devices for other diseases through a wide-scale manufacturing process.
No. 9 – “Alcohol Affects a Gene Related to Cystic Fibrosis Promoting the Development of Pancreatitis”
A study led by researchers at the University of Szeged in Hungary recently revealed that excessive alcohol consumption impairs the function of the defective gene in cystic fibrosis (CF), leading to pancreatitis. The study, published in the journal Gastroenterology, further highlighted the adverse implications that alcohol can have on those with the disease.
Céline Dion once again joined the campaign to raise awareness for cystic fibrosis in 2015. The singer, well-known for her support of humanitarian causes, is currently the honorary president of the Foundation Against Cystic Fibrosis, and she also supports the T.J. Martell Foundation and the Bottom Memorial of Princess Diana of Galls. This report tells of her advocacy efforts in the CF community, which have proven to be a source of inspiration and help to those with the disease and their families.
A news article posted in 2014 about positive test results for Vertex Pharmaceuticals’ Phase 3 clinical trials, TRANSPORT and TRAFFIC, continued to be a popular story throughout 2015. A report on the completion of the Vertex-sponsored trials, each with over 550 patients, as well as scientific findings for the basis of the trials, eventually led to the approval of Orkambi, a CF therapy combining Vertex’s Kalydeco (ivacaftor) and lumacaftor, has revolutionized treatment for those with the disease.
Fourteen-year-old Valentina Maureira of Chile became known worldwide after she posted a video on YouTube asking her government’s permission to end her life. Valentina suffered from cystic fibrosis, and a month after her plea to President Michelle Bachelet was refused, she died from complications associated with her disease, according to her father. In February 2015, Maureira’s plea, filmed from her hospital bed, came to international attention and raised many questions about the controversial topic of euthanasia. After posting the request, Valentina received a visit from Bachelet, who is also a pediatrician at the hospital.
An article highlighting a funny but true video guide on how to behave toward people who suffer from chronic diseases such as cystic fibrosis patients was among the most-read articles this year on Cystic Fibrosis News Today. The recommendations were posted by the organization Gifted Life, which is dedicated to supporting and nurturing transplant recipients, their families and friends, and to promoting organ donation.
The eventual approval last July of Orkambi, the combination drug from Vertex Pharmaceuticals, was heralded by the CF community as a major step in fighting the disease. For the first time, CF patients with two copies of the most common mutation, F508del, have access to a drug that with the potential to correct the underlying cause of the disease — not just to treat its symptoms. However, like all things new, there is still room to improve the medication, which had modest Phase 3 clinical results and, in addition, to develop new medications with equal promise for those CF patients still without a mutation correcting drug.
Stephen Shannon, a PhD student, CF patient and weekly columnist for Cystic Fibrosis News Today, talks about the struggle of his family with cystic fibrosis, as his sister succumbed to the disease in 2015. “My little sister, Jennifer, was a beautiful woman who, like myself, fought Cystic Fibrosis throughout her life,” Stephen wrote in his moving, heartfelt article. “On Saturday, February 7, she passed away at twenty-three after her body rejected the set of lungs she had received by transplantation the previous October in Denver, Colorado.”
A music video from OneRepublic launched in 2015 chronicled the amazing story of 15 year-old Colorado native and cystic fibrosis patient Bryan Warnecke, bringing to light his remarkable courage and personal drive through the band’s hit, “I Lived” — a song that characterizes the life journey of Warnecke and thousands of other CF patients. OneRepublic’s video begins with an intimate look at Warnecke’s daily treatment regimen for his disease, and is complemented by interview sequences where he outlines the history of his diagnosis, as well as the challenges and realities he faces now and is likely to face in the future.
In his first weekly column for Cystic Fibrosis News Today, PhD student and CF patient Stephen Shannon talks candidly about what the ongoing search for a cure for cystic fibrosis means to him, and why there is great reason for hope. “I was two years old when I was diagnosed with Cystic Fibrosis (CF). It has taken me twenty-five years to come to terms with the disease. I’ve spent the greater part of my life trying to convince myself I was normal, that I could lead a normal life. I did not want to confront the realities of the disease because there is currently no cure.”
Be sure to check in daily at Cystic Fibrosis News Today throughout the new year for continuing comprehensive coverage of the latest science, research, and advocacy news concerning CF.
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