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May

CFFC Facebook Posts – May 2020 – Part 2

05/16/2020The best material for homemade face masks may be a combination of two fabrics – This article presents research on the effectiveness of different mask materials.

05/17/2020“Achieving balance”: Sean’s story – It’s no surprise that CF life across the Atlantic isn’t much different.

05/18/2020Anti-inflammatory benefits of Orkambi and Symkevi in cystic fibrosis are uncovered – The benefits of CFTR modulators appear to extend beyond improvement in clearing out the lungs. Presumably this study will be extended to Trikafta in time.

05/19/2020Gene Therapy, KB407, Seen to Restore CFTR Protein in Cell Studies – A promising step toward gene therapy.

05/20/2020Questions to Ask Yourself When Considering College With CF – Although schools and colleges shut down prematurely, it is still appropriate to consider further education.

05/21/2020Embrace Friendly Debate: Is Cystic Fibrosis a Condition or a Disease? – Gunnar Esiason contributes to CF Awareness Month by making us aware of the various terms attached to cystic fibrosis and offering his opinion on the best way to apply those terms.

05/22/2020CFFC Face Mask Offer – With a relaxing of our state’s Pause in the Finger Lakes region (on the brink of the Memorial Day weekend), the urge to break cabin fever is strong. If (when?) you do, please stay safe; particularly, wear a face mask. CFFC still has an inventory of cloth face masks available to households that include someone living with CF.

05/24/2020How Trefoil Proteins Act to Thicken Mucus Detailed in Study – While this study adds to the complexity of conditions associated with CF, it also provides a new avenue for improving lung clearance.

05/25/2020How CF Steered Me Toward a Career in Music – Although the punchline to this blog [spoiler alert] is the new lease on life with Trikafta, it is also a story of finding new dreams when your original dream is out of reach.

05/26/2020Growing Lung Bacteria in Labs May Predict Antibiotics’ Effectiveness More Accurately – This study took a more holistic approach to assessing the effectiveness of antibiotic which adds to the move toward personalized treatments.

05/27/2020Cystic Fibrosis and Independent Living – We recognize that improvements in CF treatments have translated to longer life with a higher quality of life. A report prepared by Cystic Fibrosis Ireland shows how the advances also translated to increased independence. You might be put off by the report’s 48 pages but you can probably make it through the 5 page executive summary.

05/28/2020Parenting in the Time of COVID-19 – The Pause has offered the opportunity to catch up on things missed in the rush of “normal” times or discover new things.

05/29/2020What is Your Risk Tolerance Right Now? Mine: Going for Coffee, Exercising Outdoors, Socially Distant Gatherings – As the world slowly comes back to life, Gunnar Esiason offers a self-assessment guide to help you figure out how to respond to the opening.

05/30/2020Opportunities to Provide Input – There are opportunities to share your experiences with liver disease and CF-related diabetes. Cystic Fibrosis Foundation’s announcements for these opportunities are presented in the linked article.

05/31/2020Young CF Patients in UK Receive Machines for At-home Lung Monitoring During Pandemic – The UK has found a way to continue clinic assessments without clinic visits.


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