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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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social media feature pic jan 2017

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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charlesdarwinImogene

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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Image by Evgenios Metaxas MD MSc, Pulmonologist http://creativecommons.org/licenses/by-sa/3.0

Home Monitoring vs. Traditional Care in CF: Year-Long Study Results

A study of home monitoring vs. traditional cystic fibrosis care in 267 patients age fourteen and older showed that after a year, FEV1 decline is similar in both models, though exacerbations are detected earlier in the home monitoring group. Home monitoring consisted of twice weekly electronic logging of spirometry and …

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What is Cystic Fibrosis – Infographic

What is Cystic Fibrosis? View this handy infographic which explains, in a summarized format, what Cystic Fibrosis is, including symptoms, genetics, diagnosis and treatment. Feel free to share this infographic and at the bottom of the page, you will find a handy printable version of ‘What is Cystic Fibrosis’ (adapted to letter-sized …

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Amber’s Cystic Fibrosis Miracle

Introduction My name is Amber Newman and I’m twenty-five years old, soon to be twenty-six. I was diagnosed with CF when I was seven months old due to failure to thrive. I’ve been a member at CysticFibrosis.com since I was twelve years old. I’ve been able to connect with an …

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Lung Clearance Index Improved in Children Ages 6-11 on Ivacaftor/Lumacaftor

Ivacaftor/Lumacaftor Improves Lung Clearance Index Score In Children A new phase 3 study, led by The Hospital for Sick Children at the University of Toronto, Canada, has been completed on the CF treatment ivacaftor/lumacaftor in children ages 6-11 with two F508-del CFTR mutations. In a group of 206 children from …

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graphic by By Lbudd14 (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Outcomes and Tolerances in Cystic Fibrosis Treatment Lumacaftor/Ivacaftor

Last month, the results of a study were published that looked at the progress and side effects of the cystic fibrosis treatment lumacaftor/ivacaftor in 116 people with CF during a year after starting the medication. 46 (39.7%) people reported side effects related to lumacaftor/ivacaftor, and of the side effects, 82.2% …

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Cfdiet

Cystic Fibrosis diet: Recipe Contest! Win one of 4 x $50 Gift Cards

The Cystic Fibrosis Diet Recipe Contest is open again! Enter a recipe that forms part of your Cystic Fibrosis Diet by 31 May 2017, to stand a chance to receive one of 4 $50.00 Amazon gift cards. Your recipe can include ANY of the following category ideas: Recipes for weight gain …

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Pup fell asleep with the Vest

New on Cystic Fibrosis Social Media (@knowCF)

What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …

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