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CFFC Facebook Posts – August 2018 – Part 1

For those who do not use Facebook, here are the posts to the CFFC page for the first half of August 2018.

08/01/2018Monday Morning Thoughts: Finding Exercise in Different Places, Answers to Some Questions About My Feeding Tube – Gunnar touches on two topics that have wide application in the CF community.

08/02/2018New lung cell type discovered – The identification of a specific cell where CFTR functions take place could lead to more targeted therapies.

08/03/2018Why CF Is More Than a Lung Disease – Yes, CF is much more than lung disease. This story also reminds us that CF is different from one person to the next.

08/04/2018Harmful Bacteria Replace Beneficial Ones in Gut of CF Patients, Study Finds – This study emphasizes something we all know; that is, CF affects more than lungs.

08/05/2018A Cost-Utility Analysis Of Vertex’s CF Drugs: What It Teaches Us About Trial Design -An interesting discussion; however, it raises the question of setting an objective value on the quality of life. In that way, the article displays one of the difficulties in the debate on the cost of health care.

08/06/2018How My Friends Helped Me Survive a Second Lung Transplant – This blog post reminds us that emotional support of family and friends is an integral part of CF care.

08/07/2018Tips to Make Traveling with CF a Little Easier – We’ve shared similar lists in the past but it never hurts to get a different perspective.

08/08/2018HeadsUp, a Urine-Based Diagnostic Test for CF Patients, Will be Tested in Phase 1/2 Trial – This may not be as exciting as a pregnancy test, but it could have an equally significant impact on health care decisions.

08/09/2018Explaining My Port to Airport Security – We posted a link to travel tips two days ago. This one deals with a med port and reminds us that the general population is unfamiliar with things that are commonplace in the CF community.

08/10/2018European Partners Combining Efforts to Develop New Gene Therapy for Cystic Fibrosis – Here’s hoping that collaboration, rather than competition, will produce more significant breakthroughs.

08/11/2018CF Roundtable – Summer 2018 Issue – The latest issue of CF Roundtable focuses on disaster responses for those with CF and announces unprecedented access to the 2018 North American Cystic Fibrosis

8/11/2018Product Quest Manufacturing LLC Issues Voluntary Nationwide Recall of CVS Health 12 Hour Sinus Relief Nasal Mist Due to Microbiological Contamination – Potential contamination with Pseudomonas aeruginosa.

08/12/2018A new type of cell could change the focus of CF research – Did you know that there are multiple cell types in the lining of your lungs? You probably didn’t know that one type produces more CFTR than the others. The discovery could create a new path in CF research.

08/13/2018Changing How I Eat Post-Transplant – Modifying your diet is one of the many adjustments that have to be made after lung transplantation.

08/14/2018Financial Report for the 2017-18 Fiscal Year – The financial statement for CFFC’s most recent fiscal year have been added to our web site.

08/15/2018Synspira’s SNSP113 Shows Ability to Completely Kill Drug-Resistant Bacteria in Lab, Study Reports – These results come from a lab environment, but there is a significant promise here.


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