Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala Diet Tips from a ‘Dying’ Girl Are Anger and Fear Villains, or Must We Acknowledge Them to Thrive? FDA Approves Symdeko for Treatment of CF Children, Ages 6 to 11, with Certain CFTR Mutations NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala Jun 26, 2019 07:00 am | Larry Luxner A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by 550 guests at the NASA Space Center in […] The post NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala appeared first on Cystic Fibrosis News Today. Read More Diet Tips from a ‘Dying’ Girl Jun 25, 2019 03:00 pm | Bailey Vincent This is going to feel like something you’ve read before. It’s going to say things like, “Don’t assume just because someone is thin they want to be this weight,” and, “It’s so hard being judged for something you can’t control.” All that is true. I have read the skinny-sick posts, where we grapple with identity […] The post Diet Tips from a ‘Dying’ Girl appeared first on Cystic Fibrosis News Today. Read More Are Anger and Fear Villains, or Must We Acknowledge Them to Thrive? Jun 25, 2019 09:00 am | Brad Dell It’s been almost three years since a port-a-cath infection nearly killed me. A fungal infection invaded my bloodstream and attempted murder, shutting down my organs and blasting me into a dimension of hallucination and suffering for days. When I awoke, I was a terrified, caged animal. I awoke to the news that I needed a […] The post Are Anger and Fear Villains, or Must We Acknowledge Them to Thrive? appeared first on Cystic Fibrosis News Today. Read More FDA Approves Symdeko for Treatment of CF Children, Ages 6 to 11, with Certain CFTR Mutations Jun 25, 2019 07:00 am | Joana Carvalho The U.S. Food and Drug Administration (FDA) has approved Symdeko (tezacaftor/ivacaftor and ivacaftor) tablets for the treatment of children, ages 6 to 11 years, with cystic fibrosis (CF) who have certain mutations that respond to treatment, its developer, Vertex Pharmaceuticals, has announced. In order to be eligible for the treatment, children must carry either two […] The post FDA Approves Symdeko for Treatment of CF Children, Ages 6 to 11, with Certain CFTR Mutations appeared first on Cystic Fibrosis News Today. Read More   Recent News My Recent Health Revelation Got Me Thinking About Infertility and CF Long Use of Inhaled Antibiotics to Treat P. aeruginosa in Children May Raise Risk of Fungal Infection 31 Days of CF: Hannah’s Story 31 Days of CF: Chad’s Story My Temporary Foray into the Visible Realm of an Invisible Illness