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Dec

CFFC Facebook Posts – December 2020 – Part 1

12/01/2020An explainer on genetic therapies and cystic fibrosis – UK’s Cystic Fibrosis Trust published a brief primer on DNA and genetic therapies.

12/02/2020Not Everyone Has Access to Miracles – This blog is a good look at the two sides of a miracle.

12/03/2020Choosing to Not Pursue Lung Transplant – This story has two themes: (1) The decision to pursue lung transplantation is not an easy one, and (2) the introduction of Trikafta may provide more time to wrestle with the decision.

12/04/2020The COVID 19 vaccine and CF – The UK is ahead of the US on the authorization of a COVID-19 vaccine. The Cystic Fibrosis Trust take on the situation may give us some insight into our future (although the details are bound to be different).

12/05/2020Music May Make Airway Clearance Sessions More Enjoyable for Children – Here’s an addition to your inventory of techniques that improve treatment compliance.

12/08/202012 tips to help you manage your finances over the festive season – The economic ramifications of the pandemic have produced money worries for many families. UK’s Cystic Fibrosis Trust provided some advice for managing personal finances during the holiday season. The article lists resources specific to Great Britain; however, there are equivalents in the the US. For example, NY’s HEAP program for heating assistance (https://otda.ny.gov/programs/heap/) and CFF’s Compass program (https://www.cff.org/Assistance-Services/About-Compass/)

12/09/2020Mental Health Post-Transplant – Those who have successful transplantation will tell you that there are trade-offs. This blog reminds us that mental health is a significant component of CF post-transplant as well as before.

12/10/2020Children with CF experience mild COVID illness – Researchers funded by UK’s Cystic Fibrosis Trust developed data that should ease the concerns about children living with CF.

12/11/2020Yes, I Will Get The COVID-19 Vaccine When It’s My Turn – With the recommendation for Emergency Use Authorization of the Pfizer COVID-19 vaccine, your decision regarding vaccination is about to get real. Here is Gunnar Esiason’s take on the topic.

12/12/2020Special tax deductions available this year for cash donations to charities; IRS works to raise awareness – With the loss of property tax deductions on your federal return, many people converted to the standard deduction. One of the lesser known provisions of the CARES acts allows individuals using the standard deduction to take an additional $300 deduction for charitable contributions (including donations to CFFC).

12/13/2020Survey Opportunity: Genetic-based Therapies – Your input can help guide CFF’s research agenda for genetic-based therapies; particularly for nonsense and rare mutations.

12/14/2020Adding Medical Cannabis to My Care Plan – This topic may be controversial for some but this bloggers insights are worth the read.

12/15/2020Defects in Mitochondria May Sustain Burkholderia Cenocepacia Infections in CF – Once again, we can marvel at basic science. This study did not produce new treatments; however, it produced information which will guide research on future treatments for one of the more difficult bacterial infections.


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