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featured_memberLiving With CFTreatments

Orkambi has simply changed my life…a Cystic Fibrosis reflection

A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat Cystic Fibrosis. This post was originally published on our forums by member RubyRoseLee. Two Years Ago “I’ll never forget the emotions I was feeling that morning. I had just gotten …

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Spirometry test at clinic
AdheranceLiving With CFTechnologyTeens

Digital Spirometry and the Cystic Fibrosis patient

For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can …

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CFapp_pilot
AdheranceResourcesTechnology

An App for Cystic Fibrosis to bring Data to Market

Update on our app for Cystic Fibrosis: the pilot study We are getting ready for our Pilot Study: 20 patients for 30 days using a customizable app that measures 18 different modules for CF.  I recorded the above 2 minute audio slide show overview of the presentation I gave at …

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Advocacyfeatured_memberLiving With CFNews & Events

Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!

Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …

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thedatawillseeyou now
AdheranceAdvocacyfeatured_memberNews & EventsTechnology

Fertile Areas for Experimentation: a New App for Cystic Fibrosis!

One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …

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charlesdarwinImogene
Living With CFNews & EventsResearchSupportTechnology

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

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hard to treat Burkholderia cenocepacia
Living With CFResearchRespiratory Disease

University of British Columbia studying B-cepacia with some success!

Burkholderia cenocepacia has been a very hard to treat bacterial infection for our Cystic Fibrosis  community.  Some of you may remember a member of our community, LightnLife…Lauren Beyenhoff.  She was a trained scientist and an active member of our site a few years ago. I remember our days on Second …

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PGCFT
AdheranceLiving With CFResearchTechnology

Evolution of a New App for Cystic Fibrosis management

Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …

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GeneticsLiving With CFResearch

Cystic Fibrosis Genetics: First Structural Map of Cystic Fibrosis Protein

First structural map of the cystic fibrosis protein sheds light on how mutations cause disease. This article highlights this recent discovery in cystic fibrosis genetics. Scientists from Rockefeller University have created the first three-dimensional map of the protein responsible for cystic fibrosis, an inherited disease for which there is no …

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legislation
AdvocacyFinancialLiving With CFResources

Make Friends with your Legislators! Tell them about Cystic Fibrosis.

Especially for Cystic Fibrosis, how the government acts on the Accountable Care Act  (ObamaCare) does make a difference! Since Healthcare was such a big issue in the last election: Keep in touch with your legislators…YOU HIRED THEM!  They need to hear from YOU! Make them your FRIENDS! Congress: Find your …

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