CFFC Facebook Posts – May 2022 – Part 1
05/01/2022 – Cystic Fibrosis Around the World: The Kingdom of Jordan – Another flashback to Gunnar Esiason’s series about CF experiences on other countries. This one has a nice tie in to the discussion in the Kit Taylor lecture regarding the additional challenges faced by the non-white CF community.
05/02/2022 – AbbVie Offers 2022-2023 Funding, Marking 30 Years of CF Scholarships – Here’s the annual opportunity to get financial support for college. The article includes a link to the AbbVie scholarship site.
05/03/2022 – What I’ve Learned About Breastfeeding With CF – Improved treatments have led to more women with CF becoming mothers. This blogger offers advice on a significant issue in motherhood: breastfeeding.
05/04/2022 – Speak out and share your CF truth – May is CF Awareness Month. The UK’s Cystic Fibrosis Trust has launched their “#CF Truths” campaign. The linked page will give you access to graphics and more that you can use to share facts about life with CF. Some are specific to the UK but most are generic.
05/05/2022 – CF-370 Reduces Hard-to-treat Bacteria in Rabbit Model – Initial results of this research are promising for defeating the defensive strategies of Pseudomonas aeruginosa.
05/06/2022 – CF Awareness Month – Two days ago, we shared resources from the UK to help you promote CF Awareness Month. Today’s link connects you to similar resources produced in the US by the Cystic Fibrosis Foundation.
05/07/2022 – Quantum mechanics could explain why DNA can spontaneously mutate – Although this research does not have implications for CF treatment, you might find the investigation of the source of genetic mutations interesting.
05/08/2022 – “More than anything, we are never alone”: Beth’s story – With all the good news stories about Trikafta (Kaftrio in Europe), we can lose sight of the fact that not all of the stories are positive.
05/09/2022 – 31 Days of CF: My Tattoos Helped Me Cope With Having CF – Each individual needs to find their unique path to controlling their well being.
05/10/2022 – More Than a Lung Disease – This blogger talks about the mental strain of dealing with extraordinary events on top of the daily struggle with health maintenance.
05/11/2022 – Kaftrio and mental health – A few days ago, we shared a story from the UK dealing with the side effects of Trikafta (called Kaftrio in Europe). Today’s link connects you with a statement from UK’s Cystic Fibrosis Trust noting the existence of negative experiences and the importance of sharing those outcomes to improve the understanding of CFTR modulators.
05/12/2022 – CFTR Protein Defects May Work to Protect Against Severe COVID-19 – With the continuing presence of COVID, this research is still relevant to people living with CF. A cautionary note: CF cells treated with CFTR modulators in the lab were as susceptible to COVID as non-CF cells.
05/13/2022 – 2021-2022 Impact Report – Cystic Fibrosis Canada has issued their report on the progress made in the last year. The report not only demonstrates the global effort to improve the lives of those living with CF, but also offers insights that are relevant here.
05/14/2022 – Struggling to Process My Son’s Rare Mutations – We periodically acknowledge the CF population dealing with nonsense mutations. Here is a first person account of the difficulties that are encountered by those who fall outside the “normal” range.
05/15/2022– Self-acceptance Helped Save My Life – Advocacy takes many forms. Sometimes you need professional help so you can take care of yourself.