Seven posts were made to the CFFC Facebook page during the week of 2/16-22/2025.
02/16/2025 – Orkambi shows benefits for children with cystic fibrosis – Orkambi, an earlier version of a CFTR modulator, has demonstrated long-term benefits. The drawback: its use is limited to those with two copies of the F508del mutation.
02/17/2025 – Learning to Love Myself After Years of Bullying – Dealing with the realities of CF can strain mental health; negative comments from peers who don’t understand creates a whole different set of mental health stress. This blogger developed a strategy to overcome the “peer pressure.”
02/18/2025 – The South African Cystic Fibrosis Registry – Report 2023 – Reviewing CF registry reports gives us perspective on the status of CF in our country and community. For example, of the nine provinces in South Africa, there are no CF centers in three of them. From the linked page, you can access a summary report and a detailed report.
02/19/2025 – Raising Awareness as a Teacher With CF – Formal training in education is a good background for sharing the experience of living with CF in an age-appropriate manner.
02/20/2025 – Scientists decode diet from stool DNA — no questions asked – Have you ever struggled with completing a diet log in preparation for a clinic visit? Would it be easier to provide a stool sample? [May not be an easy answer.]
02/21/2025 – “If research can focus on ways to make treatments simpler or more effective, it could mean so much” – While this article promotes a survey in the UK, Laura’s story and desire for simplified treatments is universal. {US residents are probably not eligible for the survey.]
02/22/2025 – Baby gut bacteria fails to mature normally with CF, study finds – Like many early studies, this research provides an answer that raises more questions. It may be a first step to improving immunity in children with CF