CFFC Facebook Posts – December 2019 – Part 2
12/16/2019 – Proteostasis to Test Personalized Treatment with Novel CFTR Modulators in Europe – This article contains two piece of exciting news from Europe. First, potential CFTR modulators for rarer mutations. Second, the use of organoids to assess effectiveness before treatment starts.
12/17/2019 – Research that leaves no-one behind – More from Europe (this time Cystic Fibrosis Trust) on a range of efforts to solutions for rarer CFTR mutations.
12/18/2019 – Darcy’s Blog: A Mysterious Health Issue – An interesting story about …
12/19/2019 – Role Reversal: How I Balanced Caregiving as a CF Patient – While CF is a (the most?) significant aspect in your life, there are other demands that are important.
12/20/2019 – Chronic Kidney Disease Highly Prevalent in CF, Kidney Function Poorer in Transplanted Patients, Italian Study Says – Your are probably familiar the impact that antibiotics have on the kidneys. This study points to other CF-related factors that contribute kidney disease – and a recommendation for mitigating the risks.
12/21/2019 – CF rare mutations and the fear of being left behind – This blogger moderates some of the recent good news on Trifkafta. [NOTE: Cystic Fibrosis Foundation is committed to finding equivalent treatments for all mutations.]
12/22/2019 – Diet to Help Manage Glucose in CF Patients: A Nutritionist’s View – You may have had this conversation with a nutritionist: not all calories are good calories.
12/23/2019 – Realizing CF Didn’t Make My Goals Impossible – That time when you realize that Cf does not define you.
12/24/2019 – CF Newborn Screening Improves Weight and Lung Outcomes, but Has No Impact on Social Inequalities, Study Suggests – Good news and sad news. Good: early diagnosis leads to better outcomes. Sad: early diagnosis cannot overcome poor finances.
12/25/2019 – Wishes for the holidays – This is the time of year when we share wishes of “Happy Holidays.” This blog includes some holiday wishes from our Canadian neighbors.
12/26/2019 – Recognizing the Ego that Comes with Having CF – This blog suggests balance is needed when when building the confidence of someone living with CF.
12/27/2019 – Procedural Anxiety – CFF provides a good description of the anxiety associated with clinic visits and hospital stays, as well as strategies for dealing with it.
12/28/2019 – CF Foundation Virtual Events 2020 – At times, long-term planning seems incongruous with CF. That said, you should still mark your calendars for CFF’s major virtual events.
12/29/2019 – Michel Desrochers: Wishing to Hear My Baby Breathe Easily – A view of the future from the mom of a recently diagnosed child.
12/30/2019 – 33rd Annual North American Cystic Fibrosis Conference – If you were unable to attend the North American Cystic Fibrosis Conference (most of you?), you can watch all of the sessions at the conference archive site.
12/31/2019 – The Future of CF – New Year’s Eve is a time to look forward. This blog by a professor of pathology at Duke University Medical Center (who happens to be living with CF) provides his insights for the future in four areas of CF care.