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Dec

CFFC Facebook Posts – November 2021 – Part 2

11/16/2021After a Lung Infection and a Pandemic, I Finally Ran the Boston Marathon – A story of grit from a member of the TEAM CF Boston Marathon Team. [NOTE: Rochester’s own Chris Kvam was also a member of that team.]

11/18/2021Herbal Remedies Play a Role in Maintaining My Good Health – Herbal remedies may work well in addition to (not instead of) pharmaceuticals.

11/19/2020There’s Still Time to Get Covered – Cystic Fibrosis Foundation Compass staff remind us that there is still time to get or adjust insurance coverage before the open enrollment period ends on 12/07/2021. Compass can help you with this process; however, their offices will be closed next week (11/22-26).

11/20/2021My Disabilities Grant Me Accommodations, but Give Me Guilt – This blogger explores one aspect of the emotional toll of chronic illness.

11/21/2021How Finding Other Mothers to Share the Good and Bad of CF Helped Me – Perhaps the best guide after a CF diagnosis is someone who has already traveled that path. CF Foundation’s Peer Connect (as mentioned is this blog) is one source. CFFC can also help find someone with a shared experience to talk with you. Send a note to info@cffamilyconnection.org if you’re interested.

11/22/2021Elexacaftor Also Works as CFTR Potentiator, Study Says – Research continues to find new combinations that help CFTR to work effectively.

11/23/2021Celebrating an important anniversary in Pseudomonas aeruginosa research – This article describes three key things learned about Pseudomonas in the 21 years since its whole genome sequence was identified.

11/24/2021Children With CF and COVID-19 – An update on the what has been learned about the impact of COVID on the CF community.

11/25/2021 – Happy Thanksgiving – Today is a good opportunity to step away from the busy world and give thanks for the good parts of our lives.

11/26/2021Cystic fibrosis faithfully modeled in a human Lung Airway Chip – Technology could help bring much needed drugs, and personalized medicine approaches to CF patients.

11/27/2021The Pros and Cons of Disclosing My Disability – This blogger shares her views on the important question of when (or if) to tell people about CF.

11/28/2021The effects of the COVID-19 pandemic on people living with rare diseases: a doctor’s view – This is a view from the UK, but similar effects have been seen in the US.

11/29/2021Community Stories – Tyrus Sleightholme – This young man has found a way to balance what he wants in life with the necessities demanded by CF.

11/30/2021My Experience on The Voice Australia – This blogger notes that the mental health challenges of CF are as daunting as the physical challenges. [The story is also reminiscent of Brianna Collichio’s run at American Idol.]


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