Six posts were made to the CFFC Facebook page during the week of 7/30-8/5/2023.
07/30/2023 – Your child can reduce the risk of getting sick at school – The Cystic Fibrosis Foundation has produced a simple chart to help children understand how to avoid getting sick. This statement accompanied the PDF: “Some germs can be particularly dangerous for people with cystic fibrosis. Your child can reduce the risk of getting sick at school by staying informed about how germs are spread. While informing your child’s school about their CF is a personal choice, it can make it easier for staff to help your child reduce the risk of getting and spreading germs.”
07/31/2023 – Campaign seeks to improve CF diagnosis after newborn screening – Delayed CF diagnosis has significant implications for the progression of the disease. This article describes a program designed to improve CF awareness in health professionals; especially regarding non-white ethnic groups.
08/02/2023 – Neurodivergence and cystic fibrosis: Mum Amanda* shares Oscar’s* story – CF doesn’t give you a pass on other health concerns.
08/03/2023 – BMI increase with Kaftrio may not be linked to energy intake – Researchers are working to understand the ramifications of CFTR modulators.
08/04/2023 – As People With CF Live Longer, Their Needs Are Changing – This story is an important reminder that people living with CF are more than CF itself. That applies to health issues as well as other aspects of life.
08/05/2023 – Updates on Trikafta for 2-5 Years olds, Rare Mutations and the Drugs for Rare Disease Strategy – While this article does not directly apply to our community, it offers a sense of the challenges faced pin roviding CF care in different jurisdictions.