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Apr

CFFC Facebook Posts – March 2020 – Part 2

03/17/2020 – It is disappointing (if not scary) to find empty store shelves when you’re looking for essential supplies. CFFC would like to help in a small (very small) way. We have six 8 ounce bottles of hand sanitizer that we can give to a person/family in need to bide them over until stores are restocked.

If you have an immediate need for hand sanitizer, send a request to either:
info@cffamilyconnection.org, or
tuneup_tins@cffamilyconnection.org

We will fill any requests received on a first-come-first-served basis with a limit of one bottle per request.

03/18/2020How Can We Support Health Systems Through the COVID-19 Crisis? Telehealth for Starters – Gunnar Esiason offers an interesting perspective, and some reasonable suggestions, on CF care during the COVID-19 pandemic.

03/19/2020CF Foundation Announces up to $5M Award to Support First-Ever Controlled Clinical Study of Phage Therapy in Cystic Fibrosis – An important step in the search for new weapons against resistant bacteria.

03/21/2020My Unconventional Airway Clearance Routine – This blog not only promotes a different approach to airway clearance but notes the adjustments required with the introduction of Trikafta.

03/22/2020 – New CRISPR Tool Fixes CFTR Mutations in CF Patients’ Stem Cells, Study Finds – An important advance in the effectiveness of CFTR gene editing.

03/23/2020ResearchCon 2020 – Registration is now open for ResearchCon 2020. The virtual event will open with a discussion of COVID-19 and CF. Full agenda and a link to registration is available in the announcement.

03/24/2020Reverting to My Pre-Trikafta Norms Feels… Weird – This blog from Gunnar Esiason could have a subtitle of “the more things change, the more they stay the same.”

03/25/2020Virtual Connection Opportunities – This week will provide you with two opportunities to participate in virtual gatherings that deal with aspects of COVID-19 in the CF community.

03/26/2020URMC Pediatric Clinic Status – The staff of the URMC pediatric CF clinic have developed COVID-19 guidance for the CF community.

03/27/2020Student Project Aims to Make CF Physiotherapy a Game – Here’s a potential opportunity to improve treatment compliance. For adults as well as youngsters.

03/28/2020Coronavirus and your mental health – Just like everything else, COVID-19 heightens the concerns of mental health in at-risk populations. This article offers some good advice for managing the impact.

03/29/2020Tips on Surviving Quarantine From a Person With CF – As this blogger points out, the general population is getting a glimpse of staying safe with CF.

03/30/2020 – It Took a Global Crisis to Allow Remote Learning in Extreme Situations – Gunnar Esiason finds a silver lining in the social distancing we’re experiencing now.

03/31/2020Azithromycin Slows Lung Function Decline in CF Patients with P. aeruginosa, Study Says – You may be familiar with azithromycin; this study indicates that it is a valuable long-term component in the arsenal against lung disease.


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