CFFC Facebook Posts – June 2021 – Part 1
06/01/2021 – David Van Beers: A Legacy of Hope – Inspirational stories of life with CF come from all over the world; this one comes from Canada.
06/02/2021 – Phage Therapy: Legacy of CF Advocate Mallory Smith Endures – Dramatic advances in treatments carry special meaning when they are associated with a name.
06/03/2021 – The 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.
06/04/2021 – Sildenafil Increases Exercise Capacity, Study Suggests – Exercise improves CF outcomes. This study offers an approach that may reduce strain of exercising.
06/05/2021 – Let’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.
06/06/2021 – Waking 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.
06/07/2021 – CFI 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.
06/08/2021 – 10 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.]
06/09/2021 – Smartphone 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.
06/10/2021 – Why 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.
06/11/2021 – Orkambi 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.
06/12/2021 – Getting 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.
06/13/2021 – FDA 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.
06/14/2012 – Bridging 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.
06/15/2021 – Adapting to the Evolution of Care – We’ve got some exciting updates on the program for CFFC’s 2021 Education Day.