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CFFC Facebook Posts – June 2016

For those of you who don’t follow CFFC on Facebook, here are the original posts made to our page during June 2016.

06/01/2016BEF Announces Collaboration with Johnson & Johnson for First of its Kind TRU Heroes Nursing Program – This is a promising program since nurses have the most contact with CFers during hospitalizations.

06/02/2016Empowering my Daughter to Take Charge of her CF Care – Letting go can be hard. Seeing an empowered child is the reward.

06/03/20165 Facts About Cystic Fibrosis and Reproduction – Increases in CF life expectancy bring about other expectations, such a having children. This article summarizes some key facts.

6/05/2016CF Podcast 155: CF Airway Clearance Options – A video from Gunnar Esiason about his preferred airway clearance.

06/07/2016Study Finds How Certain Bacteria Evolve in Lungs of Cystic Fibrosis Patients – An adage in the study of organizational behavior says that, in order to change a “problem,” you have to understand the root cause. This research finding could lead to more effective treatments for bacterial infections.

06/09/2016Why I Celebrate My Son’s CF Milestones – Erin’s CFF Community Blog stimulates the memory of “the worst day of our lives” but it also reminds us that there is so much more to celebrate.

6/10/201618 Hospital Hacks – Some of the references are obviously to products used in the UK, but you can still get the gist of the ideas.

06/11/2016Yeast Models Suggest New Ways of Restoring CFTR Function in Lungs of CF Patients – More basic research that could pave the way to improved treatments.

06/13/2016What I’ve Learned About Care as a CF Patient and Hospital Administrator – This CF Community Blog is reminiscent of Education Day when Tiffany Christensen explained the insights she has gained by being a patient working in health care.

06/14/2016Promising Phase 1Trial on POL6014 for Cystic Fibrosis Finished – First of two companion posts. This article discusses the positive results in a safety and effectiveness trial for the drug POL6014 which is intended to reduce lung tissue damage.

06/14/2016Neutrophil elastase inhibitor POL6014 – Second of two companion posts. This reference from the pharmaceutical company developing POL6014 provides a description of the physiology being investigated.

06/19/2016How I Explained My CF to My Boyfriend – Amanda’s story on the CF Community Blog addresses a topic everyone living with CF deals with in building relationships.

06/21/2016What Is Cystic Fibrosis? – Since we were recently contacted by a mother of a newly diagnosed child, it seemed appropriate to share one of the many “What is CF” videos. This brief description could come in handy in explaining CF to family and friends in the early stages of dealing with the disease.

06/23/20164 Tips for Telling Your CF Story to Legislators – Some sound advice from the CF Community Blog if you are trying to influence policy makers on issues relating to CF.

06/25/2016Gene Editing: Q&A With Bill Skach – From the CFF Community Blog, some background information on an exciting area of cellular research.

06/28/2016P. aeruginosa Thrives in CF Patients by Feeding Off Natural Bacteria in Lungs, Study Finds – A finding that may spur development of more effective antibiotics.

06/29/201612 Tips on Exercise with CF – Some good exercising tips discovered by a local enthusiast, Chris Kvam.

06/30/2016Study Identifies Clinical Relevance of CFTR Mutations in Cystic Fibrosis Development – Looking to expand the knowledge of which CFTR mutations develop into CF.


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