Seven posts were made to the CFFC Facebook page during the week of 2/26-3/4/2023.
02/26/2023 – E-cigarettes, marijuana of ‘growing popularity’ among younger patients – The legalization of marijuana and the prevalence of e-cigarettes prompted a study of attitudes relating to smoking within the CF community, including providers.
02/27/2023 – Adapting to Life as a Parent of a Child With CF – The CF diagnosis comes as a surprise to many but the adjustment can still be difficult when family history gives you a warning,
02/28/2023 – The Coming Cystic Fibrosis Gene Therapy Clinical Trial Supply Conundrum – Gunnar Esiason expands our understanding of the challenge to adequately populate competing clinical trials.
03/01/2023 – CFFC has received a request for participants in an interesting opportunity to impact the future of CF care. The message from the research team is presented below. It includes the parameters of their proposal and information on how to sign up.
Call for volunteers!
Medical students from Texas A&M’s graduate EnMed program are seeking anyone who have a personal experience with Cystic Fibrosis to answer questions about the effects of the disease. Medical students in the EnMed program simultaneously pursue their MD degree and a Master’s in Engineering with the end goal of educating a new type of doctor hyperfocused on health innovation. Our health team has chosen Cystic Fibrosis as a focus area with innovation potential. We want to ensure that our efforts are put towards finding a solution that will make a large impact and actually improve the lives of the CF community.
In order to understand where the gaps in patient care and opportunities to improve the care of CF, we are conducting background research on the unmet needs of those affected by the disease. In order to gain a well-rounded idea of the effects of the disease, we are open to anyone who is willing to give their time including (but not limited to): patients, family/friends, healthcare providers, biotech innovators, etc. We are conducting this research until May of 2023. All participants will be deidentified.
We will prepare about 10 questions we want to ask you depending on your background. We prefer to conduct a 30 minute interview via zoom but email responses will help as well. If you are willing to help our understanding of how we can help the CF landscape, please reach out to joannemk@tamu.edu with a few short sentences on how the disease has affected you.
Thank you!
03/02/2023 – New paper published on the future of cystic fibrosis therapies – This article summaries a report on the status and future of CF treatments. A link to the full report can be found at the end of the article. Although the paper is based on the activities of the UK’s Cystic Fibrosis Trust, it is a good look at the progress being made.
03/03/2023 – Journal of CF Highlights Cost Burden Prevalent in the Cystic Fibrosis Community – The cost of care impacts course of life with CF. This article from the Cystic Fibrosis Foundation sumarizes the finding of a study conducted by researchers from George Washington University. The full report is linked in the article, but you’ll have to pay to read it.
03/04/2023– How I met my wife: A tale of first dates, cystic fibrosis, and Disney – Building lasting relationships is hard under any circumstances. This blogger describes how his approach, using honesty, finally paid off.