Six posts were made to the CFFC Facebook page during the week of 7/28-3/2024.
07/28/2024 – Explore Health Trends in Our [CF Foundation] 2023 Patient Registry Highlights Handout – The link opens a PDF with summary statistics from the CF Registry maintained by the Cystic Fibrosis Foundation.
07/30/2024 – Standing up to CF: Yvonne’s story – Another Trikafta (Kaftrio in the UK) success story with a twist on how hospitalizations led to a new career.
07/31/2024 – How an emerging disease in dogs is shedding light on cystic fibrosis – Interesting research. Dogs can develop CF-like symptoms from a dysfunctional CFTR channel without a mutation of the CFTR gene. Further research is likely to have relevance to human CF.
08/01/2024 – Tips for Managing the Financial Burden of CF – Chronic disease does not exempt you from the problems of “normal” life. This blogger offers some suggestions for dealing with financial pressures.
08/02/2024 – Telehealth, home spirometry help manage CF in children: Study – The use of telemedicine options increased during the COVID pandemic. This study concluded that a hybrid schedule (mixing telemedicine and in-person visits) was as effective as the all in-person format used prior to the pandemic. Bonus: reductions in flu, travel and time off.
08/03/2024 – Running an ultra-marathon for Cystic Fibrosis Trust – This Kaftrio (Trikafta in the US) success story has an important reminder of the importance of mental health care.