CFFC Facebook Posts – June 2021 – Part 2
06/16/2021 – Dealing With Ignorance When You Have CF – It would be pretty unusual if you haven’t encountered a relative, friend or complete stranger who has made some off the mark comment because s/he doesn’t understand CF.
06/17/2021 – Understanding and responding to the needs of diverse ethnic communities – This article describes the approach UK’s Cystic Fibrosis Trust is taking to diversity (including religion, spoken languages, and cultural practices and beliefs). While the specifics deal with the programs in the UK, the observations are universal.
06/18/2021 – RNA-based Therapies Show Promise in Early Studies, ReCode Reports – This report is exciting, not only for the science, but also because it targets nonsense mutations which are not served by the current CFTR modulator therapies.
06/19/2021 – Scientists demonstrate promising new approach for treating cystic fibrosis – And the promising news keeps coming. This reports details another study that identified a technique to “fix” CFTR splicing errors where the current modulators are not effective.
06/20/2021 – Looking Back at the First Year After My Son’s CF Diagnosis – An appropriate message for Father’s Day: the view from the father of a boy’s first year of life ‘s with CF.
06/21/2021 – Back in the Swing of Things – After the unscheduled year off, CFFC is getting back in the swing of things with our Living with CF Golf Tournament. The linked page includes the tournament brochure and entry form.
06/22/2021 – How I Discovered That PTSD Was Causing My Post-transplant Struggles – This blog post has a couple of good lessons for dealing with major changes in your life.
06/23/2021 – Improving the digestive symptoms of cystic fibrosis – GI issues pose significant challenges to people living with CF. This article describes the steps being taken in the UK to improve GI health. The US population will ultimately benefit from this research.
06/24/2021 – Top 10 Tips for Road Trips With Your Child With CF – This blog contains some good observations as we approach the summer vacation season.
06/25/2021 – Sneeze cam reveals best fabric combos for cloth masks – Although COVID-related mask requirements are easing up, masking never goes out of style in the CF community. This practical research can help you pick the best mask for you.
06/26/2021 – BiomX’s Phage Cocktail Seen to Kill Resistant P. aeruginosa in Studies – Resistant bacteria are a significant problem in CF lungs (and may continue to be after transplant). This study is a positive step in phage therapy to combat resistant organisms.
06/27/2021 – Health Canada approval of transformational cystic fibrosis medication brings hope to CF community – Here’s a reminder that a CF community across the lake has a different level of access to CFTR modulators. The article also include statistics on their effectiveness.
06/28/2021 – Risk Assessment in an Ever-Changing World – Health risk assessment is a skill that will be useful at all times.
06/29/2021 – Dietary App May Help CF Patients in Meeting Nutritional Needs – The expression “there’s an app for that” may eventually be applied to CF nutrition.
06/30/2021 – Kaftrio, one year on – The view from the UK after one year’s experience with Trikafta (Kaftrio in Europe).