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Apr

CFFC Facebook Posts – April 2020 – Part 1

04/01/2020 An Evening with Gunnar and Darcy Postponed – Unfortunately, we are postponing our June 4th education event. Better safe than sorry.

04/02/2020A Doctor’s Perspective on CF Care – This “conversation between a person living with CF and the director of an adult CF clinic produces many important observations. One that stands out: the most helpful element in building a rapport with patients is “[s]pending time with them.”

04/03/2020Fighting CF with Family and Friends – This blogger suggests that the current conditions may heighten emotions felt regularly felt by people living with CF and others with chronic disease.

04/04/2020Vertex Assures Supply of CF Therapies, But COVID-19 Likely to Affect Trials – Not really a big surprise, but at least the currently approved drugs will likely be available.

04/05/2020Michelle’s story: cancelled plans, isolation and the kindness of others – Although this story comes from across the ocean, it will sound pretty similar.

04/06/2020Patient Privacy and the Pandemic: Where Do We Draw the Line? – Gunnar Esiason engages in an internal debate which gives us food for thought about applying normal standards in times of crisis.

04/07/2020Exceeding My Fitness Goals With Trikafta – Time for a “good news” link? Sure.

04/08/2020Maintaining Good Nutrition for Individuals with Cystic Fibrosis during COVID-19 – This link will open a PDF entitled “Maintaining Good Nutrition for Individuals with Cystic Fibrosis during COVID-19.” The document was prepared by Sydney Children’s Hospital, so there a few bullets that are specific to Australia.

04/09/2020 – Emotional Wellness & COVID-19 Webinar – [event is over]

04/10/2020NORD’s Advice on COVID-19: You’re Stronger Than You Think – You ARE strong. This article reinforce the things that will help you get through the current crisis.

04/11/2020Facing the Monster: My COVID-19 Experience – Time for another good news story. “Practicing” with CF helped this woman beat COVID-19.

04/12/2020A letter from your CF psychologists – Some useful advice for these trying times.

04/13/2020Your Cystic Fibrosis Experience Will be Enormously Valuable in the Post-Pandemic World – Gunnar Esiason suggests the CF community can help the rest of the population deal with the post-COVID world.

04/14/2020AbbVie CF Scholarship 2020 Deadline – Assuming fall academics get back on track, you may need a college scholarship.

04/15/2020Kalydeco’s Use for 1 Year or More Seen to Aid Body Mass and Lung Capacity – While Kalydeco has been replace as the primary CFTR modulator, the earlier release has permitted the study of long-term affects. It’s unknown whether similar results will be produced by Orkambi and Trikafta,


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