Gunnar_2
AdheranceLiving With CF

A Conversation with Gunnar Esiason

Gunnar Esiason is the son of retired American NFL quarterback, Norman (Boomer) Esiason. He is twenty-six years old and living with cystic fibrosis. He is currently the director of the patient advocate program at the Boomer Esiason Foundation in Garden City, New York. Their mission is to heighten awareness, education …

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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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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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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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thinkinginsidethebox
AdheranceLiving With CFResourcesTreatments

Think INSIDE the box for easier inhaled treatments – cystic fibrosis treatment

It’s taken me a long time, but I finally have a ‘system’ that has made inhaled treatments easier to keep up with. Background In childhood, I was very compliant with the CF treatments, as my parents helped me. I didn’t need to think about it; it just happened. In my late …

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rx-redesign
AdheranceLiving With CFTreatments

Redesigning Prescription Medication Inserts

Six everyday items were re-imagined by designers in this week’s New York Times Magazine. A data visualization firm, Periscopic, and Thomas Goetz of Iodine, a health information website, created a more informative and easier to understand prescription medication insert that can be viewed here (scroll down the page to find …

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bluetooth
AdheranceLiving With CFResearchTechnology

Bluetooth-enabled tech shows promise for adherence in Cystic Fibrosis treatment

A device that monitors inhaled antibiotic use in Cystic Fibrosis treatment, and transmits the information to doctors via Bluetooth technology resulted in improved adherence and lung function in a pilot study from Ventura County Medical Center in Ventura, California. Reported in a press release from the journal Chest this month: …

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mediq
AdheranceLiving With CFSupportTechnology

Med-IQ: Creating a Partnership for Adherence in Cystic Fibrosis treatment

We were recently contacted by Med-IQ, a company that educates CF medical professionals and patients and caregivers. We looked at their resources and felt the community here at cysticfibrosis.com might be interested in learning more from them. Med-IQ’s mission is “To deliver education that brings measurable change in healthcare professional …

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loveandlogic
AdheranceLiving With CFParentingSupport

Parenting Children with Health Issues: From our Archives

This video was one of five presented on CysticFibrosis.com by Lisa Greene. Lisa is the mother of two children with CF. She is an excellent model of motherhood. Happy Mother’s Day! Salt and Light, Imogene

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