Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Community Sleep Tight, CF Community Taking to the Skies with Cystic Fibrosis Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Community Mar 15, 2019 07:00 am | Hal Foster Mention a rare disease milestone — and a new approach to treatment, a new medicine, or even a cure comes to mind. March 15, though, marks a milestone of a different sort for cystic fibrosis (CF) patients: the debut of a Hollywood film about people with the illness. “Five Feet Apart” — see the official […] The post Movie ‘Five Feet Apart’ Sparks Mixed Reactions Among Cystic Fibrosis Communityappeared first on Cystic Fibrosis News Today. Read More Sleep Tight, CF Community Mar 14, 2019 03:00 pm | Luisa Palazola Life has a way of changing plans and allowing others to help you embrace a new path. Before I sat down to write this column, I went to my favorite coffee shop to get an iced vanilla latte. I enjoy the small moments with my baristas, and I’m always open to their conversations and bits […] The post Sleep Tight, CF Community appeared first on Cystic Fibrosis News Today. Read More Taking to the Skies with Cystic Fibrosis Mar 14, 2019 09:00 am | Elly Aylwin-Foster The gentleman in front of me is held up. An unsmiling, uniformed official calls him to one side with a brisk gesture. We exchange worried glances. The beeping intensifies and I start to perspire. I’m up next. My bag clinks with small, powdered vials and syringes. In my palm, I clutch a letter that explains […] The post Taking to the Skies with Cystic Fibrosis appeared first on Cystic Fibrosis News Today. Read More Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn Mar 14, 2019 07:15 am | Larry Luxner Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as scheduled, at the end of this month. Collin is an expert on the subject. For her University of Bath dissertation, she analyzed Brexit’s long-term impact on the 3.5 million people in England, […] The post Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn appeared first on Cystic Fibrosis News Today. Read More Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations Mar 14, 2019 07:00 am | Patricia Inacio, PhD Cystic fibrosis (CF) patients in Australia age 12 and older, who have two copies of the F508del mutation in the CFTR gene (a copy inherited from each parent), now can be treated with Vertex Pharmaceuticals’ Symdeko (tezacaftor/ivacaftor and ivacaftor). The treatment also was approved for any mutation in the CFTR gene that responds to Symdeko based on lab tests and/or clinical evidence. Some of the treatment-responsive mutations are: P67L, […] The post Symdeko Approved in Australia for CF Patients Age 12 or Older With Certain Gene Mutations appeared first on Cystic Fibrosis News Today. Read More   Recent News Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD CF Patient Joshua Skampo Gearing Up for 4th Boston Marathon My Thoughts on Social Security Disability Insurance I See Poetry in the Scientific Process ContraFect Granted Up to $6.94M to Develop Novel Therapy Against ESKAPE Pathogens