Cystic fibrosis sufferer and lung transplant survivor Emily Hoyle to climb world's highest volcano
A lung transplant transformed the life of cystic fibrosis sufferer, Emma Hoyle, and she is joining a group of transplant recipients who are attempting a 6000m climb Cotopaxi, the highest volcano in the world (Source: The Telegraph : Health Advice)
Source: The Telegraph : Health Advice - June 22, 2015 Category: Consumer Health News Tags: cystic fibrosis Emma Hoyle Harefield Hospital Andre Simon Climbing for my donor lung transplant Source Type: news

How Does Spinal Muscle Atrophy Present?
Discussion Muscle tone is the slight tension that is felt in a muscle when it is voluntarily relaxed. It can be assessed by asking the patient to relax and then taking the muscles through a range of motion such as moving the wrists, forearm and upper arm. Muscle strength is the muscle’s force against active resistance. Impaired strength is called weakness or paresis. There are 5 levels of muscle strength. Hypotonia can occur with or without weakness. Decreased fetal movements in utero, persistent hypotonia and difficulty feeding are more consistent with congenital rather than an acquired hypotonia. Common treatable c...
Source: PediatricEducation.org - June 22, 2015 Category: Pediatrics Authors: pediatriceducationmin Tags: Uncategorized Source Type: news

Clinical Updates in Cystic Fibrosis-Related DiabetesClinical Updates in Cystic Fibrosis-Related Diabetes
Learn more about systic fibrosis-related diabetes, the commonest extrapulmonary complication of cystic fibrosis. Seminars in Respiratory and Critical Care Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - June 19, 2015 Category: Consumer Health News Tags: Critical Care Journal Article Source Type: news

Boulder biotech Nivalis sees shares rise in IPO
Stock in bIotech drug developer Nivalis Therapeutics Inc. jumped 6.5 percent on its first day of public trading Wednesday, closing at $14.92 per share. The Boulder-based company generated $77 million from sales of 5.5 million shares in its IPO. Nivalis stock (Nasdaq: NVLS) debuted at $14 and rose as high as $17.89 in mid-day trading before settling to its closing price. The company, formerly N30 Pharmaceuticals, is developing a cystic fibrosis treatment as its leading project. It plans to use… (Source: bizjournals.com Health Care:Biotechnology headlines)
Source: bizjournals.com Health Care:Biotechnology headlines - June 17, 2015 Category: Biotechnology Authors: Greg Avery Source Type: news

Boulder biotech Nivalis sees shares rise in IPO
Stock in bIotech drug developer Nivalis Therapeutics Inc. jumped 6.5 percent on its first day of public trading Wednesday, closing at $14.92 per share. The Boulder-based company generated $77 million from sales of 5.5 million shares in its IPO. Nivalis stock (Nasdaq: NVLS) debuted at $14 and rose as high as $17.89 in mid-day trading before settling to its closing price. The company, formerly N30 Pharmaceuticals, is developing a cystic fibrosis treatment as its leading project. It plans to use… (Source: bizjournals.com Health Care:Hospitals headlines)
Source: bizjournals.com Health Care:Hospitals headlines - June 17, 2015 Category: Hospital Management Authors: Greg Avery Source Type: news

New tool identifies novel compound targeting causes of type 2 diabetes
A new drug screening technology has identified a new potential anti-diabetes compound -- and a powerful way to quickly test whether other molecules can have a positive effect on a critical molecular pathway believed to be central to diseases ranging from diabetes to retinitis pigmentosa, cystic fibrosis, Huntington's disease, and Alzheimer's. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - June 17, 2015 Category: Science Source Type: news

Lung transplant survival rates good for Canadians with cystic fibrosis
(Source: St. Michael's Hospital News and Media)
Source: St. Michael's Hospital News and Media - June 15, 2015 Category: Hospital Management Tags: Hospital News Source Type: news

Protalix BioTherapeutics Announces AIR DNase(TM) Data Presented at the 38th European Cystic Fibrosis Conference
(Source: Medical News (via PRIMEZONE))
Source: Medical News (via PRIMEZONE) - June 12, 2015 Category: Pharmaceuticals Source Type: news

A Family's Heart-Warming Meeting With Recipient of Son's Organ Donation
A 26-year-old student was saved with a lung transplant after battling cystic fibrosis. (Source: ABC News: Health)
Source: ABC News: Health - June 3, 2015 Category: Consumer Health News Tags: Health Source Type: news

Cystic Fibrosis Medicine Study Offers Hope
(Source: eMedicineHealth.com)
Source: eMedicineHealth.com - May 27, 2015 Category: Journals (General) Source Type: news

Cystic Fibrosis Medicine Study Offers Hope
Title: Cystic Fibrosis Medicine Study Offers HopeCategory: Health NewsCreated: 5/27/2015 12:00:00 AMLast Editorial Review: 5/27/2015 12:00:00 AM (Source: MedicineNet Lungs General)
Source: MedicineNet Lungs General - May 27, 2015 Category: Respiratory Medicine Source Type: news

Cystic Fibrosis Medicine Study Offers Hope
Many people with cystic fibrosis are optimistic about a new drug on the horizon, Orkambi. (Source: WebMD Health)
Source: WebMD Health - May 26, 2015 Category: Consumer Health News Source Type: news

[Research Article] A molecular switch in the scaffold NHERF1 enables misfolded CFTR to evade the peripheral quality control checkpoint
A molecular switch in a scaffolding protein enables a misfolded, but partially functional, cystic fibrosis protein to evade a quality control checkpoint. (Source: Signal Transduction Knowledge Environment)
Source: Signal Transduction Knowledge Environment - May 20, 2015 Category: Science Authors: Cláudia A. Loureiro, Ana Margarida Matos, Ângela Dias-Alves, Joana F. Pereira, Inna Uliyakina, Patrícia Barros, Margarida D. Amaral, Paulo Matos Source Type: news

Novel Drug Combo Improves Function of Cystic Fibrosis Protein - 5/20/15
A novel two-drug combination has the potential to target and restore a defective protein underlying cystic fibrosis (CF), according to two phase III clinical trials conducted at 187 medical centers around the world, including Johns Hopkins. (Source: Johns Hopkins Medicine News)
Source: Johns Hopkins Medicine News - May 20, 2015 Category: Research Source Type: news

Lung Transplantation for Cystic FibrosisLung Transplantation for Cystic Fibrosis
Find out more about when to consider lung transplantation and more for patients with cystic fibrosis. Seminars in Respiratory and Critical Care Medicine (Source: Medscape Today Headlines)
Source: Medscape Today Headlines - May 20, 2015 Category: Consumer Health News Tags: Critical Care Journal Article Source Type: news

Key component in protein that causes cystic fibrosis identified
(University of Missouri-Columbia) Nearly 70,000 people worldwide are living with cystic fibrosis, a life-threatening genetic disease. There currently is no cure for the condition, but researchers from the University of Missouri have identified a key component in the protein that causes the disease. It is a finding that may lay the foundation for the development of new medications and improved therapies. (Source: EurekAlert! - Biology)
Source: EurekAlert! - Biology - May 19, 2015 Category: Biology Source Type: news

'Groundbreaking' treatment found for cystic fibrosis
Stephen FellerCHICAGO, May 18 (UPI) -- A combination of drugs cystic fibrosis drugs was found in a "groundbreaking" study to address the disease itself, rather than just ease symptoms for patients. (Source: Health News - UPI.com)
Source: Health News - UPI.com - May 18, 2015 Category: Consumer Health News Source Type: news

Drug combination for cystic fibrosis looks promising
Conclusion This trial has demonstrated that this new treatment combination could be effective in improving lung function for people with cystic fibrosis who have two copies of the common Phe508del CFTR mutation. The trial has many strengths, including its large sample size and the fact it captured outcomes at six months for almost all participants. The improvements in lung function were seen while the participants continued to use their standard cystic fibrosis treatments. As the researchers suggest, this indicates the treatment could be a beneficial add-on to normal care to further improve symptoms. The results seem very...
Source: NHS News Feed - May 18, 2015 Category: Consumer Health News Tags: Heart/lungs Medication Source Type: news

Combo Treatment for Cystic Fibrosis Shows Promise
Researchers say therapy could help 15,000 people in United States alone Source: HealthDay Related MedlinePlus Pages: Cystic Fibrosis, Genes and Gene Therapy, Medicines (Source: MedlinePlus Health News)
Source: MedlinePlus Health News - May 18, 2015 Category: Consumer Health News Source Type: news

Drug Combo Targets Common Cystic Fibrosis Gene AbnormalityDrug Combo Targets Common Cystic Fibrosis Gene Abnormality
Results from the phase 3 TRAFFIC and TRANSPORT trials suggest the oral combination of lumacaftor and ivacaftor improves lung function and curbs exacerbations. Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - May 18, 2015 Category: Consumer Health News Tags: Pulmonary Medicine News Source Type: news

Combo Treatment for Cystic Fibrosis Shows Promise
Title: Combo Treatment for Cystic Fibrosis Shows PromiseCategory: Health NewsCreated: 5/18/2015 12:00:00 AMLast Editorial Review: 5/18/2015 12:00:00 AM (Source: MedicineNet Lungs General)
Source: MedicineNet Lungs General - May 18, 2015 Category: Respiratory Medicine Source Type: news

New treatment brings hope on cystic fibrosis
Professor Stuart Elborn, who led the European part of the trial at Queen's University, Belfast, described the drug as a 'breakthrough'. (Source: the Mail online | Health)
Source: the Mail online | Health - May 18, 2015 Category: Consumer Health News Source Type: news

Combination Treatment for Cystic Fibrosis Shows Promise
Researchers say therapy could help 15,000 people in United States alone (Source: Pulmonary Medicine News - Doctors Lounge)
Source: Pulmonary Medicine News - Doctors Lounge - May 18, 2015 Category: Respiratory Medicine Authors: webmaster at doctorslounge.com Tags: Pharmacy, Pulmonology, Research, News, Source Type: news

Promising research trials find new combination of drugs treat underlying cause of most common form of cystic fibrosis
Results from clinical trials show that a new combination of medications can successfully treat the underlying cause of cystic fibrosis for patients 12 and older with two copies of the F508del gene mutation -- the most common form of the life-threatening, genetic disease found in over half of the CF population. (Source: ScienceDaily Headlines)
Source: ScienceDaily Headlines - May 17, 2015 Category: Science Source Type: news

Combination Treatment for Cystic Fibrosis Shows Promise
Researchers say therapy could help 15,000 people in United States alone Source: HealthDay Related MedlinePlus Pages: Cystic Fibrosis, Genes and Gene Therapy, Medicines (Source: MedlinePlus Health News)
Source: MedlinePlus Health News - May 17, 2015 Category: Consumer Health News Source Type: news

Cystic fibrosis treatment found to improve lives of sufferers in trials
Combination of lumacaftor and ivacaftor modifies genetic defect that causes half of cases of disease that affects 10,000 UK children Continue reading... (Source: Guardian Unlimited Science)
Source: Guardian Unlimited Science - May 17, 2015 Category: Science Authors: Sarah Boseley Health editor Tags: Drugs Health UK news Science Society Genetics Source Type: news

'Groundbreaking' cystic fibrosis drug
A "groundbreaking" cystic fibrosis therapy could profoundly improve quality of life, say doctors. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - May 17, 2015 Category: Consumer Health News Source Type: news

Lumacaftor/Ivacaftor Combo Helps Common CF Mutation (CME/CE)
(MedPage Today) -- Phase III trial finds drug combo boosts forced expiratory volume in homozygous Phe508del cystic fibrosis patients. (Source: MedPage Today Pediatrics)
Source: MedPage Today Pediatrics - May 17, 2015 Category: Pediatrics Source Type: news

Groundbreaking treatment for patients with cystic fibrosis
(Ann & Robert H. Lurie Children’s Hospital of Chicago) Groundbreaking treatment that uses two medications that target the most common genetic cause of cystic fibrosis shows lung function improvement and lowers the rate of pulmonary exacerbations. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - May 17, 2015 Category: Global & Universal Source Type: news

Eurovision Song Contest singer Bianca Nicholas on living with cystic fibrosis
LIVING with cystic fibrosis hasn’t prevented Eurovision Song Contest hopeful Bianca Nicholas from fulfilling her dream. (Source: Daily Express - Health)
Source: Daily Express - Health - May 16, 2015 Category: Consumer Health News Source Type: news

ASCO, Denali, Vertex: Pharma News You May Have Missed This Week
A flood of cancer drug data poured into the public domain, a huge neuroscience startup got financed, and an FDA advisory panel gave a green light to an important combo drug for cystic fibrosis. (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - May 16, 2015 Category: Pharmaceuticals Authors: Luke Timmerman Source Type: news

What You Need To Know In Biotech: An ASCO Disappointment, Big Money In Brains And A New CF Drug
A flood of cancer drug data poured into the public domain, a huge neuroscience startup got financed, and an FDA advisory panel gave a green light to an important combo drug for cystic fibrosis. (Source: Forbes.com Healthcare News)
Source: Forbes.com Healthcare News - May 16, 2015 Category: Pharmaceuticals Authors: Luke Timmerman Source Type: news

Unexplainable Grace
The simplest of things can hold the greatest significance and beauty. They can ignite a fire within, overwhelm us with gratitude and revive the spirit of hope that dwells inside each of us. We can search far and wide seeking out beauty in the grandest of forms, but sometimes the most substantial beauty is in the simplest of existence. Simple Beauty It's incredible how something as unassuming as a white piece of paper with a few numbers can carry so much meaning and beauty. It really means so many things, but most of all that piece of paper represents the life within every breath I take. It represents the grace I've been ...
Source: Healthy Living - The Huffington Post - May 14, 2015 Category: Consumer Health News Source Type: news

CF Combo Drug Wins FDA Panel Backing
(MedPage Today) -- If approved, drug could be given to large numbers of cystic fibrosis patients. (Source: MedPage Today Pulmonary)
Source: MedPage Today Pulmonary - May 13, 2015 Category: Respiratory Medicine Source Type: news

Newborns With Unclear CF Tests May Develop Disease LaterNewborns With Unclear CF Tests May Develop Disease Later
By age 3 years, 11% of infants with inconclusive results on newborn cystic fibrosis testing developed the disease, underscoring the need for added monitoring. Medscape Medical News (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - May 13, 2015 Category: Consumer Health News Tags: Pediatrics News Source Type: news

FDA Panel Backs Vertex Cystic-Fibrosis Drug Orkambi
Vertex Pharmaceuticals’ experimental cystic fibrosis treatment Orkambi won the backing of an FDA advisory panel, which recommended approval. (Source: WSJ.com: Health)
Source: WSJ.com: Health - May 13, 2015 Category: Pharmaceuticals Tags: PAID Source Type: news

FDA panel fails to find Vertex lumacaftor positive for cystic fibrosis
WASHINGTON (Reuters) - A divided U.S. Food and Drug Administration advisory committee on Tuesday said research data does not show definitively that Vertex Pharmaceutical Inc's drug lumacaftor has a positive effect on cystic fibrosis patients when used in combination with the company's approved therapy, Kalydeco. (Source: Reuters: Health)
Source: Reuters: Health - May 12, 2015 Category: Consumer Health News Tags: healthNews Source Type: news

Cystic Fibrosis Drug Wins Approval of F.D.A. Advisory Panel
The drug, which directly counteracts the genetic defect that causes cystic fibrosis, might help as many as half of American patients. (Source: NYT Health)
Source: NYT Health - May 12, 2015 Category: Consumer Health News Authors: ANDREW POLLACK Tags: Cystic Fibrosis Drugs (Pharmaceuticals) Food and Drug Administration Vertex Pharmaceuticals Inc Source Type: news

FDA panel recommends approval for Vertex cystic fibrosis drug
Correction: An earlier version of this story mischaracterized the FDA's approval process today. The FDA has not yet approved Vertex's drug; an FDA advisory panel has recommended its approval. The Food and Drug Administration's advisory committee has recommended that the FDA approve a new drug from Vertex Pharmaceuticals, which has the potential to help treat an additional 8,500 patients with cystic fibrosis. The drug, Orkambi, has the potential to make the 26-year-old Boston-based drugmaker (Nasdaq:… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - May 12, 2015 Category: American Health Authors: Jessica Bartlett Source Type: news

Vertex's Cystic-Fibrosis Drug Faces Big Test
An FDA advisory committee on Tuesday will consider whether to recommend approval of biotech Vertex’s experimental cystic-fibrosis drug, Orkambi. (Source: WSJ.com: Health)
Source: WSJ.com: Health - May 11, 2015 Category: Pharmaceuticals Tags: PAID Source Type: news

FDA staff questions value of Vertex's cystic fibrosis combo
(Reuters) - Staff reviewers from the U.S. FDA questioned whether Vertex Pharmaceuticals Inc's experimental combination therapy for cystic fibrosis had an added benefit over the company's already approved therapy, Kalydeco, in patients with the most common genetic mutation behind the deadly disease. (Source: Reuters: Health)
Source: Reuters: Health - May 8, 2015 Category: Consumer Health News Tags: healthNews Source Type: news

Dr. Elizabeth Tullis of St. Michael’s Hospital appointed to Cystic Fibrosis Canada Chair in Adult Cystic Fibrosis Research
(Source: St. Michael's Hospital News and Media)
Source: St. Michael's Hospital News and Media - May 8, 2015 Category: Hospital Management Tags: Hospital News Source Type: news

Cystic fibrosis sufferer eats 8,000 calories a day without putting on weight
The svelte 20-year-old, from Amlwch, Anglesey, munches her way through fry-ups, crisps, chocolate and snacks everyday just to maintain her 7st 7lbs weight. (Source: the Mail online | Health)
Source: the Mail online | Health - May 8, 2015 Category: Consumer Health News Source Type: news

Female cystic fibrosis patients need more contraceptive guidance, study finds
(University of Pennsylvania School of Medicine) Only half of women with cystic fibrosis report using contraception and frequently apt to become pregnant unintentionally, according to a new study from researchers at the Perelman School of Medicine at the University of Pennsylvania. As recently as the 1960s, children with cystic fibrosis -- an inherited disease that causes thick, sticky mucus to form in the lungs, pancreas, and other organs -- often died before attending elementary school. Today many people with the disease live into their 30s, 40s and beyond. (Source: EurekAlert! - Social and Behavioral Science)
Source: EurekAlert! - Social and Behavioral Science - May 7, 2015 Category: Global & Universal Source Type: news

​Cambridge company says parents should be screened for genetic muscular disorder
Cambridge-based genetics company Good Start Genetics Inc. said that a large percentage of parents are believed to be carriers of the genetic mutation behind spinal muscular atrophy, findings the company hopes encourage organizations to add the disease to suggested screenings. According to recent data published by Good Start Genetics, of 63,080 patients from in vitro fertilization centers, Good Start detected 1,067 genetic carriers of the disease. “It’s not much less prevalent than cystic fibrosis,”… (Source: bizjournals.com Health Care:Physician Practices headlines)
Source: bizjournals.com Health Care:Physician Practices headlines - May 6, 2015 Category: American Health Authors: Jessica Bartlett Source Type: news

DNA modification could wipe out genetic diseases like cystic fibrosis
EXCLUSIVE: Christopher Gyngell, a research fellow in neuroethics at Oxford University, argues that far from being wrong, the research on human gene editing is' ethically imperative'. (Source: the Mail online | Health)
Source: the Mail online | Health - May 6, 2015 Category: Consumer Health News Source Type: news

Tiny Corbus Looks to Take on Vertex With Cystic Fibrosis DrugTiny Corbus Looks to Take on Vertex With Cystic Fibrosis Drug
Corbus Pharmaceuticals Holdings Inc's experimental drug for cystic fibrosis could be a real money spinner and pose a challenge to rival Vertex Pharmaceuticals Inc's successful treatment, Kalydeco. Reuters Health Information (Source: Medscape Medical News Headlines)
Source: Medscape Medical News Headlines - May 6, 2015 Category: Consumer Health News Tags: Pulmonary Medicine News Source Type: news

List of Physically Disabled World Leaders & Politicians
Though there are many types of disability the list below only covers physically disabled world leaders and politicians. Physical disabilities may arise from conditions such as congenital deformities, spina bifida and/or hydrocephalus, muscular dystrophy, cerebral palsy, brittle bones, haemophilia, cystic fibrosis or severe accidental injury. The characteristics of people with physical disabilities are as unique to the individuals as the conditions that created their special needs. Physical Disability Characteristics Can Include: Paralysis. Unsteady gait. Altered muscle tone. Loss of, or inability to use, one or more l...
Source: Disabled World - May 5, 2015 Category: Disability Tags: Awareness - Disability Source Type: news

Tiny Corbus looks to take on Vertex with experimental lung drug
(Reuters) - Corbus Pharmaceuticals Holdings Inc's experimental drug for cystic fibrosis, a rare lung-scarring disease, could be a real money spinner and pose a challenge to rival Vertex Pharmaceuticals Inc's successful treatment, Kalydeco. (Source: Reuters: Health)
Source: Reuters: Health - May 4, 2015 Category: Consumer Health News Tags: healthNews Source Type: news

£10 test for lung patients could flag up potentially deadly infections early
The first version of the test will be made available to the 10,000 British patients with genetic disease cystic fibrosis (CF), which causes respiratory problems along with other symptoms. (Source: the Mail online | Health)
Source: the Mail online | Health - May 3, 2015 Category: Consumer Health News Source Type: news