Seven posts were made to the CFFC Facebook page during the week of 4/14-20/2024.
04/14/2024 – Navigating the Emotions of Chronic Lung Rejection – Transplantation is not a “cure” and comes with its own set of risks. This blogger has some recommendations for managing the emotiuonal challenge of “bad news.”
04/15/2024 – Bacterial ‘docking stations’ on cells may explain a Trikafta shortcoming – Trikafta works to thin mucus which then makes the lungs less hospitable to bacterial growth. However, this research shows that The drug does not affect the chemistry that make CF lungs more susceptible to infection.
04/16/2024 – From an early age: Pediatric Modulator Trial – In relating the story of her daughter’s experience with a clinical trial, Ashley offers encouragement for participation if the opportunity arises.
04/17/2024 – Healthy bacteria fend off infectious Pseudomonas with acetic acid – This study not only identified bacterial activity that impedes Pseudomonas, but also adds a challenge to finding an appropriate antibiotic treatment.
04/18/2024 – “I never thought running a marathon would be possible”: Nell’s London Marathon story – Another story about how Kartrio (Trikafta) has made the unimaginable possible. The story may also inspire you to participate in Great Strides.
04/19/2024 – CFFC Family Day 2024 – Friendly Reminder: CFFC is planning a family outing for the CF community this summer. We are looking at two outdoor venues. We are seeking input on which location is preferred by the community. [NOTE: Survey is closed.]
04/20/2024 – Low iron levels may remain in CF despite using CFTR modulators – There are two take-aways from this study. One, CFTR modulators do not address all symptoms of CF. Two, more research is necessary to address iron deficiency in people living with CF.