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CFFC Facebook Posts – June 2021 – Part 1

06/01/2021David Van Beers: A Legacy of Hope – Inspirational stories of life with CF come from all over the world; this one comes from Canada.

06/02/2021Phage Therapy: Legacy of CF Advocate Mallory Smith Endures – Dramatic advances in treatments carry special meaning when they are associated with a name.

06/03/2021The Latest Books and Music From People With CF – If you want supplemental reading that involves CF (fiction as well as non-fiction), Cystic Fibrosis Foundation put together a list that my interest you.

06/04/2021Sildenafil Increases Exercise Capacity, Study Suggests – Exercise improves CF outcomes. This study offers an approach that may reduce strain of exercising.

06/05/2021Let’s Talk About the Invisible Battle of Mental Health – As this blogger suggests, you can’t talk too much about getting care for your mental health as well as your physical health.

06/06/2021Waking just one hour earlier cuts depression risk by double digits, study finds – Yesterday, we posted about the battle with mental health. Today’s article suggests that paying attention to your sleep cycle may help.

06/07/2021CFI Update: Public health measures for COVID-19 – This set of advice for returning to “normal” comes from Ireland; however, the common sense approach is universal.

06/08/202110 Years with My Feeding Tube – Gunnar Esiason shares the history of his feeding tube including the post-Trikafta adjustments. [BTW: Stay tuned for an update on Education Day – 8/4/21 – with Gunnar and Darcy Cunningham.]

06/09/2021Smartphone App Study to Assess How Trikafta Affects Daily Life – Important research also takes place outside the laboratory. This study will gather patient experiences to provide a “real life” picture of the outcomes associated with Trikafta.

06/10/2021Why Screen Time Can Be a Good Thing – This blogger offers his views on the pros and cons of our virtual world; especially the implications for the CF community.

06/11/2021Orkambi Seen on CT Scans to Aid Lung Health, Mucus Clearance – This study identified physiological sources of improvements experienced by individuals taking Orkambi. Given the difference in formulation, the scan results may not be applicable to those taking Trikafta.

06/12/2021Getting Trikafta Saved my Life – Can you get enough Trikafta success stories? This one has the twist on the difficulty in getting access to Trikafta in Canada.

06/13/2021FDA Approves Trikafta for Children Ages 6 Through 11 With Certain Mutations – Earlier use of Trikafta could help avoid the long-term complications of recurring infections in young lungs.

06/14/2012Bridging the Divide Between the Individual and the Community – This blog points to the necessity of understanding the individual CF experience as well as the “norms” in the CF community.

06/15/2021Adapting to the Evolution of Care – We’ve got some exciting updates on the program for CFFC’s 2021 Education Day.

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