Seven posts were made to the CFFC Facebook page during the week of 7/9-15/2023.
07/09/2023 – Triple combination therapy brings lasting improvement in cystic fibrosis – Research from Germany provides further evidence of the benefits of Trikafta.
07/10/2023 – First CF patient dosed in US trial of gene therapy KB407 – This report deals with a Phase 1 clinical trial with results not expected until 2024. That said, it exciting to see progress in a treatment that is intended to benefit the entire CF population.
07/11/2023 – Prenatal Testing for Cystic Fibrosis: Shane’s Story – Prenatal testing provides advance warning and early diagnosis, but there is still a lot to learn about CF care after the baby is born.
07/12/2023 – These lollipops could ‘sweeten’ diagnostic testing for kids and adults alike – Collecting samples for diagnostics is no fun, especially for kids. This research promises a technique that could make testing more tolerable.
07/13/2023 – The online CF community needs to rein in distasteful jokes – This blogger has some observations on sensitivity and respect.
07/14/2023 – Adult with CF Provides Testimony at Congressional Hearing on the Impact of Antimicrobial Resistance – First-hand stories are important for bring reality into policy discussions.
07/15/2023 – “He’s just a happy boy who’s always got a smile for everyone, including strangers” First time Dad Harry shares Kenny’s story – Every CF story is unique (with some common themes) and each story has some lessons.