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CFFC Facebook Posts – March 2019 – Part 1

03/01/2019Two Opportunities for Input – Share your views on medication education and advisory councils. The medication education survey has a deadline of 3/12 and the advisory council focus group inquiry has a deadline of 3/2.

03/02/2019Low-dose Antibiotics Preserve Airway Bacterial Diversity, but at a Cost, Study Finds – This study demonstrates the complexity in setting antibiotic dosage. It also shows the diversity of treatment protocols even within a single institution.

03/03/2019How Color-Coding a Calendar Helped Me Decide When To Get Listed For a Lung Transplant – This blog deal with the second difficult decision regarding lung transplant. The first, of course, is whether you will consider transplant at all. The author does a good job describing the balance of objective and emotional factors.

03/04/2019In Case of Emergency – Some tips for providing essential information in the event you are unable to communicate directly.

03/05/2019European HIT-CF Project to Explore ELX-02 as Treatment for Rare CF Mutations – This article serves as a reminder that important research happens outside the US.

03/06/2019A complex array of drugs lie in wait for the future of cystic fibrosis drug treatment – This brief article from the UK’s Cystic Fibrosis Trust offers a good overview of the complexities in finding the appropriate mix of CFTR modulators for an individual.

03/07/2019Watch the Vlog: 2 Sisters Talk Five Feet Apart – Trailers for the Movie “Five Feet Apart” are now being run on network TV. This blog post links to a video produced by siblings sharing their (differing) reactions. This is a good resource since the views are coming from individuals living with CF. The blog also contains a link to the discussion guide prepared by the CF Foundation.

03/08/2019How to Organize Your Medications – #62 in Jerry Cahill’s Wind Sprints series offers some advice on how to approach the daunting task of staying on top of your meds. [And a reminder that Jerry will be the keynote speaker at this year’s CFFC Education Day.]

03/09/2019Window for More Effective Treatment of CF Lung Infections is 2 to 3 Years, Study Suggests – This study indicates that more aggressive treatment of Pseudomonas in younger patients may have significant long-term benefits. As a caution, the study also notes that course of chronic infections is influenced by factors specific to the individual.

03/10/2019 – Only six days left for completing our survey to select the Education Day group discussion topics. It will take less than 5 minutes. [Survey expired 03/15/2019]

03/11/20195 Things I Wish My Care Team Knew About Me – This blog is about communication but the underlying story is self-realization; that is, truly knowing yourself.

03/12/2019Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist – This article expands the discussion of advances in treatment beyond the pure science.

03/13/2019How to Use and Care for Nebulizers and Spirometers – Jerry Cahill (our Education Day keynote speaker) is big on organization and infection prevention. Here, he applies that focus to nebulizers.

03/14/2019Lung Enzyme Cathepsin S is New Therapeutic Target for CF and COPD – Two bits of good news in this article. (1) The potential to reduce the damage of inflammations. (2) Since the approach also works for COPD, the larger benefit population may encourage faster development.

03/15/2019 – Last chance to influence the discussion topics at CFFC Education Day. It only takes about 5 minutes to complete the survey. [Survey closed 03/15/2019]


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