Six posts were made to the CFFC Facebook page during the week of 1/28-2/3/2024.
01/28/2024 – CF treatments are miraculous, but what about rare mutations? – A personal perspective from someone who is ineligible for CFTR modulator treatments.
01/29/2024– A Message to My CF Patients – Care improves when the CF care team understand all aspects of their patients.
01/30/2024 – Inside the lab with CTAP coordinator Yasmine – An insider’s view on the management of clinical trials.
01/31/2024 – What We Know, What We Don’t – Here’s a podcast featuring Kori Tolbert, CFFC past-president and dear friend. Kori talks about life with CF, what she has learned and, most importantly, how she has learned to take control of her life with CF. As Kori might say, love and gratitude.The podcast runs about an hour with Kori’s introduction about five minutes in.
02/01/2024 – Study suggests secret for getting teens to listen to unsolicited advice – Here’s some more research that is not directly associated with CF. That said, the findings may be useful for parents trying to help their children transition to managing their own care.
02/03/2024 – More vigorous exercise boosts life quality, lung health with CF – Some may view this analysis as a good news/bad news situation. The good news: evidence of activity that has positive outcomes. The “bad” news: The benefits come with another demand on your time.