CFFC Facebook Posts – September 2021 – Part 1
09/01/2021 – Researchers Explore Trikafta in Younger Patients – This article describes four research projects looking at extending the use of Trikafta to children, including infants.
09/02/2021 – New bipartisan legislation can encourage needed antibiotic development – Whether or not you agree with the legislation noted in this article, the discussion provides insight to the economics affecting the development of new treatments.
09/03/2021 – Why We Chose Surrogacy After My Wife With CF Had a Lung Transplant – This blog shows one path to parenthood despite the hurdles raised by CF.
09/04/2021 – Trikafta Helps Lung Function in CF Patients With Certain Mutations – There may be no major revelations in this study, but confirmation is good. One interesting point: there was improvement with Trikafta even where the individual had taken other modulators.
09/05/2021 – Questioning the Psychology of Need – Like many aspects of chronic illness, CF may provide a different analysis of need than the “normal” view.
09/06/2021 – CF Foundation Strongly Urges Universal Masking in Schools – School is open. Vigilance is the key to a healthy year. New York’s recently issued guidelines are consistent with the CFF recommendations.
09/07/2021 – Research Overview – Cystic Fibrosis Sinus Disease – Management of complications secondary to CF, such as sinus disease, is important for maintaining an individual’s health and quality of life. CF researchers Daniel Beswick, MD, and Anna Zemke, MD, PhD, alongside Eliza Callard, an adult with cystic fibrosis, discuss new research on this important topic including studies looking at the impact of highly effective modulators on sinus disease and sinus surgery outcomes.
09/09/2021 – Minorities With CF Have Worse Lung Function, Study Says – Like many early studies, this one identified an issue that requires more work to understand the “why.”
09/10/2021 – In cystic fibrosis, above-average height in early life tied to highest pulmonary function – Another study that identifies statistics that need further explanation, including whether there is any cause and effect to the correlation.
09/12/2021 – What We’ve Learned From Our Grandchild With CF – The roles can vary across the CF support network.
09/13/2021 – Good Day for Golf, Good Day for CFFC – Our Living with CF Golf Tournament rebounded well after a year off.
09/14/2021 – Finding Balance in Life When Managing Multiple Health Conditions – This blog has two important messages. One you are a complex whole of all your parts. Two, you are you; unique in your combination of parts.
09/15/2021 – A Teacher’s Guide to CF – This isn’t new information, but it may be a timely resource to share with your child’s teacher and other key personnel at school.