juliablockchain
Living With CFResearch

A Young Mom is Exploring BlockChain Technology

I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for …

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featured_memberNews & EventsUncategorized

Gratitude! a Beautiful Example

I was surprised last summer when I received a letter of gratitude in my LinkedIn mail. We all can reach back in our memories and think of something or someone who made a difference and just quietly “give thanks”. Blake (Lance2020) actually took the time many years later to thank …

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Uncategorized

Market Research for Pulmozyme Users: Gift Cards given for an on line interview.

Again, this year we have been asked to participate in on-line Market Research. We are seeking three different groups for the research: Quota Group A – patients who use Pulmozyme – we need 21 who are age 18-24 and 11 who are age 25-29 (25-30-minute interview) $40.00 Gift Card Quota …

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AdvocacyLiving With CFResearchSurveyUncategorizedVideo

Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!

We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes

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RxDigitalMarketing-logo2
featured_memberNews & Events

An Interview: Jeanne Barnett and RXDigitalMarketing

Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017. If you are curious about the community at CysticFibrosis.com, where it came from and where it is positioning to lead the way, these are the topics of an interview Jeanne Barnett (founder of cysticfibrosis.com) had …

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wizard
Living With CFSupport

A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis

Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still relevant today with patients in our cystic fibrosis community being very astute at learning, empathetic toward each other and courageous going forward with many new drugs for personalized medicine. Thanks to PharmaPhorum …

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VitaminD_patch2
FinancialResourcesTreatments

D3forME Transdermal Vitamin D Patch: do you qualify?

Learn more about the eligibility criteria and how to apply for the D3forMe Transdermal Vitamin D patch through Healthwell’s Cystic Fibrosis Patient Assistance Program. Written by Tamika Grubbs, CF nurse consultant D3forMe proudly announces participation in Healthwell’s Cystic Fibrosis Patient Assistance Program. The D3forME Transdermal Patch is for patients who can’t absorb enough …

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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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