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CFFC Facebook Posts – March 2020 – Part 1

03/01/2020CFTR Amplifiers May Be Potent CF Mono or Combo Therapy, Study Says – Future CF treatments may include a new drug that helps the body produce more of the CFTR protein – either as treatment by itself or in combination with CFTR modulators.

03/02/2020Stepping Back as My Daughter Steps Forward – Parenting is tough, but guiding a child with CF into adulthood can be tougher.

03/03/2020Coronavirus (COVID-19) and Some of the Ethical Questions Facing the Cystic Fibrosis Community – In this blog post, Gunnar Esiason shows how he is trying to balance the fact-vs-fear atmosphere around the coronavirus outbreak.

03/04/2020 – Coronavirus Q&A – Since it is a major news story, here is more coronavirus information. This time from the UK, so you will have to translate some of the contact information.

03/05/2020We Need to Change Our Language When Discussing Mental Health – Tre Larosa takes the brave step of sharing her struggles with anxiety and depression to support her proposal to change the dialogue around this aspect of CF.

03/06/2020No One Should Be Left Behind – With all the excitement around the introduction of Trikafta, it is important that we keep our attention on the portion of the CF population that will not be helped by this (and other) CFTR modulators.

03/07/2020Research Corner: Translate Bio Recruiting Class 1 and Nonsense Mutation Patients – Yesterday’s post dealt with the concern that 10% of the CF population may be left behind in the development of CFTR treatments. Today’s article presents the research that holds hope for that portion of our community.

03/08/2020Plant-based relatives of cholesterol could give boost to gene therapy – An important step toward effective gene therapy with a dramatic increase in the delivery of the corrected RNA to the target cells. [And it appears to be independent of the specific mutation(s).]

03/10/2020What I Learned About My Trikafta Weight Gain – Two messages in this blog. The obvious one (from the title) is that Trikafta may have some unexpected side affects. The other is a reminder to discuss any and all concerns you have with your care team.

03/11/2020Faces of a Clinical Trial – This blogger discussed the balance between participating in a clinical trial (helping others as well as yourself) and taking medications that would preclude participation (helping yourself).

03/12/2020CF Foundation Statement on COVID-19 Preparedness – In addition to reinforcing the COVID-19 guidelines produced by the Center for Disease Control, this statement includes actions being taken regarding CFF-sponsored events and a link to a CFF Q&A page .

03/13/2020New study on COVID-19 estimates 5.1 days for incubation period – Here’s some science regarding the life cycle of the coronavirus.

03/14/2020I’m Still Learning How to Talk About My CF With My Mom – Cross-generation communication can be tough but, like with everything else, CF can make it tougher.

03/15/2020 – COVID-19 hits close to home. Dr. Karen Voter issued the following statement: “Due to travel and meeting restrictions in light of the Coronavirus pandemic, we are canceling this year’s Kit Taylor Memorial Lecture. We are working to see if alternative arrangements can be made for Pediatric Grand Rounds. Please revisit our website for any updates.”


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