Teacher Runs 5K Months After Undergoing Double Lung Transplant
BOSTON (CBS) — For 32-year-old Eamonn Kelly, crossing the finish line during a 5K race this weekend is more than just a dream come true; it’s really a new start at life. “I’m going to set my goal and do it,” he told WBZ. Kelly was born with cystic fibrosis, a genetic disease that affects the lungs. The older he got, the more his life began to deteriorate, he said. “Before the transplant, I was on oxygen 24-7,” Kelly says. “I had to carry a tank with me and it made life difficult for me.” Refusing to accept life this way, Kelly underwent a double lung transplant at Massa...
Source: WBZ-TV - Breaking News, Weather and Sports for Boston, Worcester and New Hampshire - May 1, 2016 Category: Consumer Health News Authors: mouellette2015 Tags: Health Local News Seen On WBZ-TV Syndicated Local Watch Listen cystic fibrosis Kim Tunnicliffe Paul Burton Transplant Source Type: news

Vertex aims at not only new patients, but on keeping those they have
On Wednesday evening, Vertex Pharmaceuticals for the first time gave its own estimates on sales of its newly launched drug for cystic fibrosis, Orkambi. And with that, it gave a detailed analysis that underscored how important it is not only for the company to attract new patients, but to make sure those patients take their pills as prescribed, and that as few of them as possible stop. The sales estimate itself came in at between $1 billion and $1.1 billion by the end of 2016, which was on the low… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - April 28, 2016 Category: Biotechnology Authors: Don Seiffert Source Type: news

Boston Chief Medical Officer Summit Announces Keynotes
The CMO Summit Confirms Keynotes from The New England Journal of Medicine, Alnylam Pharmaceuticals, Scripps Translational Science Institute, Tufts CSDD and the Cystic Fibrosis Foundation(PRWeb April 25, 2016)Read the full story at http://www.prweb.com/releases/2016/04/prweb13363519.htm (Source: PRWeb: Medical Pharmaceuticals)
Source: PRWeb: Medical Pharmaceuticals - April 25, 2016 Category: Pharmaceuticals Source Type: news

NHS snubs new lung drug that could transform the lives of cystic fibrosis suffers
UK MPs and charities have hit out at a decision by the National Institute for Health and Care Excellence (NICE) to reject a new drugs for cystic fibrosis sufferers because it is 'too costly'. (Source: the Mail online | Health)
Source: the Mail online | Health - April 17, 2016 Category: Consumer Health News Source Type: news

Unbreakable Hope
It had been five months since potent combinations of IV and oral antibiotics coursed through my veins -- my body beginning to feel more like my own again and I was beginning to recognize the person I saw in the mirror. My mind was running at full speed again. Each day my mind shed a little of its doubt and mistrust of its own body -- unassumingly instilling the belief within me that I was invincible. But I am not invincible, and Cystic Fibrosis is ever-present. I'd be lying if I said I hadn't been avoiding the signs of an exacerbation, desperate to give my body the chance to show me -- show CF, that I was strong and unbrea...
Source: Healthy Living - The Huffington Post - April 14, 2016 Category: Consumer Health News Source Type: news

New Dal recruit researching how to treat deadly pathogen for cystic fibrosis patients
A microbiologist at Dalhousie Medical School is studying a bacterium called Pseudomonas aeruginosa; it’s particularly dangerous for people living with cystic fibrosis. (Source: Dalhousie University | Medical School News)
Source: Dalhousie University | Medical School News - April 13, 2016 Category: Universities & Medical Training Authors: Allison Gerrard Tags: News Source Type: news

New Dal recruit researching how to treat deadly pathogen for cystic fibrosis patients
A microbiologist at Dalhousie Medical School is studying a bacterium called Pseudomonas aeruginosa; it ’s particularly dangerous for people living with cystic fibrosis. (Source: Dalhousie University | Medical School News)
Source: Dalhousie University | Medical School News - April 13, 2016 Category: Universities & Medical Training Authors: Allison Gerrard Tags: News Source Type: news

Mystery of the 13 people with 'superhero DNA'
Conclusion The researchers have presented some intriguing results, but their inability to contact the individuals identified in the study puts the results in question. As well as the explanation the researchers put forward, it's possible that the results are simply due to mistakes in the records. The researchers hoped to be able to identify conditions (genetic or environmental) which might protect an individual from a disease such as cystic fibrosis, which they are genetically programmed to develop. However, the current study does not even confirm that such individuals exist, never mind help us to understand possible cause...
Source: NHS News Feed - April 12, 2016 Category: Consumer Health News Tags: Genetics/stem cells Medical practice Source Type: news

She needs a cystic fibrosis breakthrough
How one woman's entourage hacked the biomedical research industry to help save her life. (Source: CNN.com - Health)
Source: CNN.com - Health - April 12, 2016 Category: Consumer Health News Source Type: news

Cystic fibrosis sufferer refused 'life-extending' drug from NHS
Hannah Lindley, 20, from Leeds, suffers from cystic fibrosis - a life-limiting genetic condition causing the lungs to become clogged with mucus. She lost her sister Iona to the disease in November. (Source: the Mail online | Health)
Source: the Mail online | Health - April 11, 2016 Category: Consumer Health News Source Type: news

'Superhero DNA' keeps diseases at bay
Some people appear to be born with 'superhero DNA' that cancels out genetic diseases like cystic fibrosis, say researchers. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - April 11, 2016 Category: Consumer Health News Source Type: news

Scientists search for 13 people to solve genetic mutation mystery
Medical research identified individuals who have mutations for eight severe childhood conditions but showed no symptomsA massive study of more than half a million people who might carry genetic mutations for 584 devastating childhood diseases has identified 13 who have mutations for severe conditions – but none of the symptoms of the disease.The implication is that there could be something in the human genetic makeup that means even those who inherit the mutation for severe conditions such as cystic fibrosis (CF) never go on to develop the disease. If so, the identification of the genetic factors that permit survival...
Source: Guardian Unlimited Science - April 11, 2016 Category: Science Authors: Tim Radford Tags: Genetics Medical research Biology Science Health Society World news Source Type: news

She raised millions for the cystic fibrosis breakthrough she needs
How one woman's entourage hacked the biomedical research industry to help save her life. (Source: CNN.com - Health)
Source: CNN.com - Health - April 11, 2016 Category: Consumer Health News Source Type: news

Why Do Some Kids Escape Terrible Genetic Disorders?
MONDAY, April 11, 2016 -- Some severe genetic birth defects, like cystic fibrosis, are considered inescapable, automatically dooming children to disease or disability if they inherit a mutated gene from their parents. But researchers now have found... (Source: Drugs.com - Daily MedNews)
Source: Drugs.com - Daily MedNews - April 11, 2016 Category: Journals (General) Source Type: news

She raised millions for the cystic fibrosis breakthrough she needs
The dynamic between Emily Kramer-Golinkoff and her mother, Liza Kramer, is unique. They're not just mother and daughter, but also two executives working on a multimillion-dollar venture. (Source: CNN.com - Health)
Source: CNN.com - Health - April 9, 2016 Category: Consumer Health News Source Type: news

She raised millions for the cystic fibrosis breakthrough she needs
How one woman's entourage hacked the biomedical research industry to help save her life. (Source: CNN.com - Health)
Source: CNN.com - Health - April 8, 2016 Category: Consumer Health News Source Type: news

Pulmonary Exacerbation Treatment Response in Cystic FibrosisPulmonary Exacerbation Treatment Response in Cystic Fibrosis
This article looks at both the short- and long-term therapeutic success -- and failure -- of treatments for pulmonary exacerbation in cystic fibrosis. Thorax (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - April 6, 2016 Category: Consumer Health News Tags: Pulmonary Medicine Journal Article Source Type: news

4 Advances That Make In Vitro Fertilization More Successful Than Ever
Tanmoy Mukherjee, MD Associate Director, Division of Reproductive Endocrinology and Infertility, Mount Sinai Health System; Co-Director, Reproductive Medicine Associates of New York; Assistant Clinical Professor of Obstetrics, Gynecology and Reproductive Science, Icahn School of Medicine at Mount Sinai When prospective parents who are unable to conceive a child on their own consult me for assistance, I am excited to help them build their families. But for them, dealing with the challenges of infertility can be as stressful as having cancer. Fortunately, the latest advances in in vitro fertilization (IVF) are giving them a ...
Source: Healthy Living - The Huffington Post - April 4, 2016 Category: Consumer Health News Source Type: news

Liver brothers: Two lives linked by split-liver transplant
It is late in the evening on June 14, 2015. Kern Tyler and his wife Pasina Mazoka-Tyler sit in a waiting room at Boston Children’s Hospital, while their 11-month-old son Malambo Mazoka-Tyler, born with a life-threatening disease called biliary atresia, undergoes a liver transplant. To arrive at this moment, they have traveled vast distances, visited multiple hospitals, sought the advice and counsel of numerous doctors, packed all their belongings and moved more than 7000 miles from their home in Zambia, Africa, to Boston, Massachusetts. He had picked out what he wanted to wear, where he wanted to be buried, and ...
Source: Thrive, Children's Hospital Boston - April 4, 2016 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories biliary atresia cystic fibrosis Cystic Fibrosis Center end-stage liver disease Heung Bae Kim Khashayar Vakili liver failure Liver transplant Liver Transplant Program Rima Fawaz Split liver transplantation Source Type: news

Liver brothers: Two lives linked by split-liver transplant
It is late in the evening on June 14, 2015. Kern Tyler and his wife Pasina Mazoka-Tyler sit in a waiting room at Boston Children’s Hospital, while their 11-month-old son Malambo Mazoka-Tyler, born with a life-threatening disease called biliary atresia, undergoes a liver transplant. To arrive at this moment, they have traveled vast distances, visited multiple hospitals, sought the advice and counsel of numerous doctors, packed all their belongings and moved more than 7000 miles from their home in Zambia, Africa, to Boston, Massachusetts. He had picked out what he wanted to wear, where he wanted to be buried, and ...
Source: Thrive, Children's Hospital Boston - April 4, 2016 Category: Pediatrics Authors: Emily Williams Tags: Our Patients’ Stories biliary atresia cystic fibrosis Cystic Fibrosis Center end-stage liver disease Heung Bae Kim Khashayar Vakili liver failure Liver transplant Liver Transplant Program Rima Fawaz Split liver transplantation Source Type: news

Microsoft's Xbox Kinect Breathes New Life into Respiratory Assessment
Xbox Kinects could be used in the future to assess the health of patients with conditions such as cystic fibrosis. Researchers at the Institute of Digital Healthcare, WMG, University of Warwick and the Institute of Inflammation and Ageing, University of Birmingham and Heart of England NHS Foundation Trust (HEFT) have developed a method of using the devices. (Source: eHealth News EU)
Source: eHealth News EU - April 4, 2016 Category: Information Technology Tags: Featured Research Research and Development Source Type: news

What is the Recurrence Risk for Clostridium difficile Infection?
Discussion Clostridium difficile infection (CDI) is a common cause of nosocomial diarrhea. Clostridium difficile is an obligate, anaerobic, gram-positive bacillus that is spore-forming and toxin producing. It is resistant to acid, heat, antibiotics and many antiseptic agents. Spores are acquired from the environment or by oral-fecal route. Once in the colon, the bacteria attach and proliferate making vegetative forms. Two main toxins are produced which disrupt the colonic integrity. Toxin A (TcdA) is an endotoxin that disrupts the mucosal cells. Toxin B (TcdB) is a cytotoxin that is 1000x more potent than TcdA and causes a...
Source: PediatricEducation.org - March 28, 2016 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Microsoft's Xbox Kinect Breathes New Life Into Respiratory Assessment
Xbox Kinects could be used in the future to assess the health of patients with conditions such as cystic fibrosis. (Source: Medical Design Online News)
Source: Medical Design Online News - March 24, 2016 Category: Medical Equipment Source Type: news

HOW TO DO MANUAL CHEST PT (Airway Clearance)
<!--cke_bookmark_218S--><!--cke_bookmark_218E--> Here's how we do Manual Chest PT (Physical Therapy or Physiotherapy) for airway clearance. Cystic Fibrosis causes an excessive amount of thick, infected mucus in the lungs that requires routine percussion & drainage therapy... so here's a few tips & tricks we've picked up over the years! (Source: The Aspergillus Website - updates)
Source: The Aspergillus Website - updates - March 23, 2016 Category: Respiratory Medicine Authors: GAtherton Source Type: news

Xbox Kinect Tech Harnessed To Monitor Cystic Fibrosis, Other Lung Diseases
Researchers in the United Kingdom have rigged a gaming console to help assess patients with cystic fibrosis and other respiratory conditions. (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - March 23, 2016 Category: Pharmaceuticals Authors: Emily Mullin Source Type: news

Microsoft's Xbox Kinect breathes new life into respiratory assessment
(University of Warwick) Xbox Kinects could be used in the future to assess the health of patients with conditions such as cystic fibrosis.Normally found in the hands of gamers rather than medics the Microsoft sensors could be used to assess the respiratory function of patients. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - March 22, 2016 Category: Global & Universal Source Type: news

Complex Care Center Forges New Outpatient Model
UR Medicine's Complex Care Center is Rochester’s first primary care practice dedicated to caring for adults with chronic childhood-onset conditions such as cystic fibrosis, sickle cell anemia, childhood cancers, autism, and intellectual and developmental disabilities. (Source: University of Rochester Medical Center Press Releases)
Source: University of Rochester Medical Center Press Releases - March 17, 2016 Category: Universities & Medical Training Source Type: news

​Eight new things keeping Vertex Pharmaceuticals up at night in 2016
New competitors. Comments by presidential candidates. Recent collaborations. Potential changes to corporate tax laws. Those are some of the new things top executives at Vertex Pharmaceuticals (Nasdaq: VRTX) revealed as potential “risk factors” in the company’s most recent annual report. The 1,950-employee company saw considerable changes over the past year with the launch of Orkambi, its new cystic fibrosis drug, which is expected to take over as the firm’s biggest moneymaker in the next… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - March 8, 2016 Category: Biotechnology Authors: Don Seiffert Source Type: news

Evolving insights into cystic fibrosis lung infections
Recent research progress into how bacteria adapt and evolve during chronic lung infections in cystic fibrosis patients could lead to better treatment strategies being developed, according to a new study. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - March 4, 2016 Category: Science Source Type: news

Evolving insights into cystic fibrosis lung infections
(University of Liverpool) Recent research progress into how bacteria adapt and evolve during chronic lung infections in cystic fibrosis patients could lead to better treatment strategies being developed, according to a new review by the University of Liverpool. (Source: EurekAlert! - Infectious and Emerging Diseases)
Source: EurekAlert! - Infectious and Emerging Diseases - March 4, 2016 Category: Infectious Diseases Source Type: news

Savara Pharmaceuticals Completes $20 Million Round of Financing
Preparation underway for Phase 3 trial of AeroVanc for MRSA lung infection in people with cystic fibrosis AUSTIN, Texas, March 1, 2016 -- (Healthcare Sales & Marketing Network) -- Savara Pharmaceuticals announced today that it has closed a $20 million ... Biopharmaceuticals, Venture CapitalSavara Pharmaceuticals, AeroVanc, cystic fibrosis (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - March 1, 2016 Category: Pharmaceuticals Source Type: news

Why are drug prices for rare diseases so high? UBC journalism project aims to find out
Why does a family with two children with cystic fibrosis pay up to $1,600 a day for pharmaceuticals? A joint project between UBC's graduate school of journalism and the school’s pharmaceutical sciences department is trying to find out. (Source: CBC | Health)
Source: CBC | Health - March 1, 2016 Category: Consumer Health News Tags: News/Canada/British Columbia Source Type: news

Dozens of celebrities filmed BREATHING for charity video for cystic fibrosis 
The video focuses on cystic fibrosis sufferer Sophie Grace Holmes, 24 She was diagnosed with the disease at four months old. The track is called 'Breathe - Life Unlimited' and features 200 breaths. (Source: the Mail online | Health)
Source: the Mail online | Health - February 29, 2016 Category: Consumer Health News Source Type: news

The Inner Chaos of Anxiety
There's a bottomless well of churning thought and emotion that engulfs the very core of our being and is born of a silent inner strength. That strength unassumingly the very foundation of who we are and the life that courses through every breath. It is the beautiful dance that lives within the purest of inner joys, yet is the weight in which embraces our tears and makes them forcefully fall. It's always present -- alive in our most vulnerable of moments and within a deep tenacious hope. A Piercing Presence But there's a deep anxiety that dares to challenge that strength in which is woven through every honest part of who I ...
Source: Healthy Living - The Huffington Post - February 23, 2016 Category: Consumer Health News Source Type: news

Steven Douglas Associates to Sponsor Inaugural What's Your Taste...
Steven Douglas Associates is a sponsor of the inaugural What’s Your Taste event benefiting Cystic Fibrosis Foundation. The event will be held on Saturday, February 20th 2016 from 6:30 p.m. – 11:00...(PRWeb February 09, 2016)Read the full story at http://www.prweb.com/releases/2016/02/prweb13202923.htm (Source: PRWeb: Medical Pharmaceuticals)
Source: PRWeb: Medical Pharmaceuticals - February 10, 2016 Category: Pharmaceuticals Source Type: news

How cystic fibrosis promotes lung infections
Scientists discovered how cystic fibrosis raises the risk for lung infections. The findings also identify a novel potential therapeutic target. (Source: NIH Research Matters)
Source: NIH Research Matters - February 9, 2016 Category: Research Source Type: news

FDA rejects Vertex's sNDA for Kalydeco to treat cystic fibrosis in people aged two years and older
The US Food and Drug Administration (FDA) has rejected Vertex Pharmaceuticals' supplemental new drug application (sNDA) for Kalydeco (ivacaftor) designed to treat people with cystic fibrosis (CF) aged two and older, with one of 23 residual function m… (Source: Pharmaceutical Technology)
Source: Pharmaceutical Technology - February 8, 2016 Category: Pharmaceuticals Source Type: news

FDA rejects expanded use of Vertex's cystic fibrosis drug
(Reuters) - The U.S. Food and Drug Administration has denied the expanded use of Vertex Pharmaceutical Inc's bestseller, Kalydeco, in certain cystic fibrosis patients, the company said on Friday. (Source: Reuters: Health)
Source: Reuters: Health - February 5, 2016 Category: Consumer Health News Tags: healthNews Source Type: news

FDA rejects expanded use of Vertex cystic fibrosis drug
(Reuters) - The U.S. Food and Drug Administration has denied the expanded use of Vertex Pharmaceutical Inc's bestseller, Kalydeco, in certain cystic fibrosis patients, the company said on Friday. (Source: Reuters: Health)
Source: Reuters: Health - February 5, 2016 Category: Consumer Health News Tags: healthNews Source Type: news

Fast, accurate cystic fibrosis test developed
Researchers have developed a fast, inexpensive and highly accurate test to screen newborns for cystic fibrosis. The new method detects virtually all mutations in the CF gene, preventing missed diagnoses that delay babies’ ability to begin receiving essential treatment. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - February 4, 2016 Category: Science Source Type: news

IUPUI chemist receives $1.1 million for research, training of future minority researchers
(Indiana University-Purdue University Indianapolis School of Science) Supported by an NSF CAREER award, Lisa M. Jones of IUPUI is developing a novel approach to study of cell membrane proteins in their native cellular environment -- work fundamental to gaining a better understanding of protein misfolding, which has been linked to life-limiting human diseases including cystic fibrosis. Her work provides state-of-the-art research training for undergraduate students from historically black colleges and universities as well as both undergraduate and graduate students from IUPUI. (Source: EurekAlert! - Biology)
Source: EurekAlert! - Biology - February 3, 2016 Category: Biology Source Type: news

New screening method detects all cystic fibrosis mutations
Stephen FellerSTANFORD, Calif., Feb. 2 (UPI) -- A new method of screening newborns for cystic fibrosis will allow doctors to start treatment as early as possible, Stanford University scientists report. (Source: Health News - UPI.com)
Source: Health News - UPI.com - February 2, 2016 Category: Consumer Health News Source Type: news

UK regulators give go-ahead for 'embryo editing'
"UK scientists have been given the go-ahead by the fertility regulator to genetically modify human embryos," BBC News reports. The UK body that regulates research into embryos – the Human Fertilisation and Embryology Authority (HFEA) – has given a licence to Dr Kathy Niakan for her research on stem cells at The Francis Crick Institute in London.The licence provides permission for genome editing techniques to be used on donated embryos for up to 14 days. The UK is the first country in the world to make this type of research legal. It remains illegal to implant modified embryos ...
Source: NHS News Feed - February 2, 2016 Category: Consumer Health News Tags: Genetics/stem cells QA articles Pregnancy/child Source Type: news

Proteostasis Therapeutics Receives FDA Fast Track Designation for PTI-428 in Patients With Cystic Fibrosis
CAMBRIDGE, MA--(Healthcare Sales & Marketing Network) - Proteostasis Therapeutics, Inc., a company developing novel therapeutics that regulate protein homeostasis to improve outcomes for patients with orphan and protein processing diseases, today announced... Biopharmaceuticals, FDAProteostasis, DRT platform, Cystic Fibrosis (Source: HSMN NewsFeed)
Source: HSMN NewsFeed - February 1, 2016 Category: Pharmaceuticals Source Type: news

Role of the clinical pharmacist in the management of CF
This article highlights the essential and varied role of clinical pharmacists as part of the cystic fibrosis (CF) multidisciplinary team (Source: Pharmacy Europe)
Source: Pharmacy Europe - January 29, 2016 Category: Drugs & Pharmacology Authors: Annabel De Coster Tags: Featured Articles Source Type: news

[Report] Airway acidification initiates host defense abnormalities in cystic fibrosis mice
Cystic fibrosis (CF) is caused by mutations in the gene that encodes the cystic fibrosis transmembrane conductance regulator (CFTR) anion channel. In humans and pigs, the loss of CFTR impairs respiratory host defenses, causing airway infection. But CF mice are spared. We found that in all three species, CFTR secreted bicarbonate into airway surface liquid. In humans and pigs lacking CFTR, unchecked H+ secretion by the nongastric H+/K+ adenosine triphosphatase (ATP12A) acidified airway surface liquid, which impaired airway host defenses. In contrast, mouse airways expressed little ATP12A and secreted minimal H+; consequentl...
Source: ScienceNOW - January 29, 2016 Category: Science Authors: Viral S. Shah Source Type: news

[This Week in Science] Airway infections put to an acid test
Author: Paula A. Kiberstis (Source: ScienceNOW)
Source: ScienceNOW - January 29, 2016 Category: Science Authors: Paula A. Kiberstis Tags: Cystic Fibrosis Source Type: news

Case Western faculty receive funding for new technologies aimed at blood, lung disorders
(Case Western Reserve University) Three Case Western Reserve University faculty members have received funding to further develop emerging technologies aimed at malaria, cystic fibrosis, and sickle cell anemia. (Source: EurekAlert! - Infectious and Emerging Diseases)
Source: EurekAlert! - Infectious and Emerging Diseases - January 28, 2016 Category: Infectious Diseases Source Type: news

Inaugural Munck-Pfefferkorn Grants Bring Research Closer to the Marketplace and Helping Patients
The Geisel School of Medicine has announced the inaugural recipients of the annual Munck-Pfefferkorn Awards. Named in honor of two luminaries from the medical school, the endowed award funds new biomedical research projects at Geisel that have high potential to benefit patients and to generate future revenue through grants or entrepreneurial endeavors. (Source: News at Dartmouth Medical School)
Source: News at Dartmouth Medical School - January 26, 2016 Category: Hospital Management Authors: Jennifer Durgin Tags: News Allan Munck biomedical research cancer COPD cystic fibrosis Elmer Pfefferkorn faculty Features grants philanthropy Source Type: news