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Sep

CFFC Facebook Posts – August 2022 – Part 2

08/16/2022“There are lots of things that come with having CF, but the financial burden was one that I never saw coming”: Kate’s story – In addition to the physical and psychological challenges, life with CF has other hurdles like the extra financial burden.mutations

08/17/2022People With CF Are Living Longer. What Does That Mean for Our Care? – This interview with the senior director of clinical affairs at the CF Foundation discusses the future of CF care.

08/18/2022Frailty Index for Lung Transplant CF Patients Helps to Predict Outcomes – Science again supports what seems intuitive. The good news is that this reports recommends the frailty index be used to initiate interventions to address vulnerabilities (rather than precluding transplant).

08/19/2022Cystic fibrosis: Causal treatment suitable from childhood – Trikafta has been available to children in the US. This study paves the way to extend the use in Europe. It may be old news but the methodology is interesting.

08/20/2022CFFC’s Annual Financial Report 2022 – While it may not be as exciting as scientific discovery, some people are interested in the finances of the organizations with which they interact. If you are so inclined, you can learn about the money side of CFFC in the linked article.

08/21/2022A Letter to Myself – Have you ever been asked “What you would tell your younger self?” This blogger did just that and paints a wonderful picture of how perspective has changed in the last 20 years.

08/22/2022eRF3a Protein May Be Target in Treating CF Nonsense Mutations – This study is evidence that the search continues for treatments benefiting all CF mutations.

08/23/2022Immune cell model paves way for new treatments targeting common infection amongst immunocompromised children – Understanding the enemy is part of the strategy to defeat the enemy.

08/24/2022A New Model of Lung Disease Paves the Way for Personalized Treatments – Advances in biotechnology bringing us closer to tailored medicines,

08/25/2022 – Interview with Professor Alan Smyth, Principal Investigator of our new SRC on CF gut symptoms – With the advances in treating CF lung disease, greater attention is being given to other significant issues in CF.

08/26/2022Individualized Education Programs (IEPs) and 504 Plans – Can you believe it? The next school year is just around the corner. The Cystic Fibrosis Foundation provides guidance on the use of Individualized Education Programs or 504 plans to support the school life of children with CF.

08/27/2022The Importance of Frivolity on My Journey With CF – Finding fun in unlikely places is a good coping strategy.

08/28/2022Exposure to Air Pollution Particles May Add to CF Clinical Variability – Air pollution is bad for everyone. This study indicates a greater negative impact on people living with CF,

08/29/2022How Chronic Illness Brought Us Together – The legacy of an individual who would not let CF define her.

08/30/2022Pioneering new analysis at University of Cambridge brings more effective treatments for Mycobacterium abscessus lung infections a step closer for people with CF – The key to developing effective treatments is to more fully understand the target.

08/31/2022Living with CF Golf Tournament 2022 – You may feel that summer is over but you can still enjoy a round of golf on September 10th while raising funds to support the local CF community. Click this link to get the details and the brochure that includes an entry form.


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