CFFC Facebook Posts – May 2021 – Part 2
05/16/2021 – Fully Vaxxed and Shedding my Mask (Most of the Time) – Gunnar Esiason’s reaction to the updated CDC COVID-19 guidelines. NOTE: Read the article, not just the headline, because there are significant “ifs” included.
05/17/2021– Molecular Analysis Identifies Key Differences in Lungs of People With Cystic Fibrosis – This research is part of the effort to find approaches to cellular correction that is not dependent on the mutation type.
05/18/2021 – I Made It to the Other Side – Despite the advances with CFTR modulators, transplantation is still the route some living with CF choose to take.
05/19/2021 – Lung function in children with cystic fibrosis in the USA and UK – Cystic Fibrosis Trust reports on an analysis coordinated with Cystic Fibrosis Foundation that compared data from their respective registries. The results suggest that the medications used in early childhood produced the difference in outcomes.
05/20/2021 – CF Didn’t Stop Me From My Dream of Becoming a Mom – This blog is about motherhood, but the perseverance can be applied to any dream.
05/21/2021 – Real-world Study Review: Kalydeco Improves Health Outcomes, Quality of Life – Kalydeco has been around long enough to do this sort of long-term assessment. It’s reasonable to expect similar (or better) outcomes for Trikafta.
05/22/2021 – Round up of research from UK CF Conference – Conference topics indicate that UK researchers put an emphasis on approaches for individuals who do not benefit from CFTR modulators.
05/25/2021 – Medical Milestones, and the Next Generation of the CF Community – Here’s an interesting take on collateral effects of improvements in CF care.
05/26/2021 – Implantable piezoelectric polymer improves controlled release of drugs – While the primary use noted in this article is cancer treatment (which is a risk for those with CF), it also mentions the potential for chronic pain control.
05/27/2021 – Balancing Advocacy and Self-care – This blogger discusses a skill we all need.
05/28/2021 – Save the Date – A reminder that CFFC will resume our Education Day event. Details on the program will be provided in the next couple of weeks.
05/29/2021 – Hope and Anxiety as My Children Await Trikafta for Ages 6-11 – A bloggers thoughts on the anticipation of expanded access to Trikafta.
05/30/2021 – Race, Income Limit CF Lung Transplant Access in US More Than Canada – We are familiar with the differences that mutation variants make in the progress of CF. This study indicates that socio-economic factors may also make a difference.
05/31/2021 – CF Foundation Funds Three New Research Awards to Advance its Path to a Cure Initiative – Ever hear someone say “put your money where your mouth is?” Cystic Fibrosis Foundation is committing funds to find treatments for those who do not benefit from current CFTR modulators.