Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Emily’s Entourage to Host 4th Annual EENY: Ultra Violet CF Fundraiser May 4 Being Brave and Making a Meaningful Connection Not All Work Is Paid: Reflections on Self-value with CF FDA Approves Kalydeco for Treatment of 6- to 12-month-old Infants with Cystic Fibrosis PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights Emily’s Entourage to Host 4th Annual EENY: Ultra Violet CF Fundraiser May 4 May 03, 2019 07:00 am | Mary Chapman The non-profit organization Emily’s Entourage is teaming up with event coordinator Eesho for its 4th Annual Emily’s Entourage New York, a fundraiser for new treatments and a cure for cystic fibrosis (CF). Known as “EENY: Ultra Violet,” the talent-laden event will begin at 7 p.m.  Saturday, May 4, at Anderson Contemporary in New York City’s Seaport District. By […] The post Emily’s Entourage to Host 4th Annual EENY: Ultra Violet CF Fundraiser May 4appeared first on Cystic Fibrosis News Today. Read More Being Brave and Making a Meaningful Connection May 02, 2019 03:00 pm | Luisa Palazola The cystic fibrosis (CF) community was in an uproar during the lead-up to the release of the film “Five Feet Apart.” Viewers had many reactions, such as the following: “It glamorizes our disease.” “There should’ve been more involvement from the CF community.” “But it creates awareness.” In this column, I would like to share an […] The post Being Brave and Making a Meaningful Connection appeared first on Cystic Fibrosis News Today. Read More Not All Work Is Paid: Reflections on Self-value with CF May 02, 2019 09:00 am | Elly Aylwin-Foster Growing up, I was lucky to attend school almost entirely uninterrupted by cystic fibrosis. I didn’t see the inside of a hospital for more than occasional appointments until I was 19. Until then, I saw no reason to do anything differently than the people around me. And the people around me were working hard. After […] The post Not All Work Is Paid: Reflections on Self-value with CF appeared first on Cystic Fibrosis News Today. Read More FDA Approves Kalydeco for Treatment of 6- to 12-month-old Infants with Cystic Fibrosis May 02, 2019 07:00 am | Santiago Gisler The U.S. Food and Drug Administration (FDA) has approved Kalydeco (ivacaftor) for the treatment of infants from six to 12 months old, who have cystic fibrosis (CF) and at least one mutation in the CFTR gene, announced the therapy’s developer, Vertex Pharmaceuticals. With the potential to treat the underlying cause of CF, the twice-daily oral therapy is […] The post FDA Approves Kalydeco for Treatment of 6- to 12-month-old Infants with Cystic Fibrosisappeared first on Cystic Fibrosis News Today. Read More PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights May 01, 2019 12:44 pm | Larry Luxner Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home. Easing these patients’ financial and […] The post PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights appeared first on Cystic Fibrosis News Today. Read More   Recent News Decreasing Acidity of Airway Liquid in Newborn CF Patients May Reduce Infection Risk, Study Suggests Here’s What It Feels Like to Have Cystic Fibrosis CF-associated Bacteria and Fungi Affect Each Other’s Growth, According to In Vitro Study As a CFer, Birthdays Remind Me that Life Is Fragile Diabetes and Insulin Treatment Adds to CF Burden and Ways Are Needed to Ease It, Study Says