PGCFT
AdheranceLiving With CFResearchTechnology

Evolution of a New App for CF

Behind The Scenes With A New App For Managing Your CF 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, doctors, …

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3dprotein
GeneticsLiving With CFResearch

First Structural Map of Cystic Fibrosis Protein

First structural map of cystic fibrosis protein sheds light on how mutations cause disease 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 cure. This achievement offers the kinds of insights essential to better …

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legislation
AdvocacyFinancialLiving With CF

Make Friends with your Legislators!

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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Living With CFResearchRespiratory DiseaseVideo

Webinar: Infection Prevention During Bronchoscopy

Laurence Muscarella Ph.D. and Atul Mehta M.D.   Webinar Highlights: The latest research into bronchoscope cross-contamination issues Most frequent causes of infection risks Most importantly:  what everyone who uses bronchoscope should kow to prevent risks Webinar

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friendship
DiagnosisLiving With CFSupport

10 Ways to Help When a Friend is Diagnosed With a Chronic Disease

This heartfelt article filled with personal experience will give you 10 great ways to respond when really “you may feel speechless” at some surprising news a friend may give you. Full of empathy and gentleness.  This is one we all need as we struggle to be our best selves for …

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research
Living With CFResearchSurvey

Thank YOU! This research is complete!

All of the goals were met in 20 hours!   This community loves to be part of research. Thank you! Research Opportunities! $40.00 Gift Card to Complete On-Line Research This research opportunity involved 5-17 year old on Pulmozyme. It was for both patients and caregivers.    

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vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey CF Drugs

In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

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Living With CFTechnologyTransplants

Lung Bio-engineering Toronto to Maryland

EX VIVO LUNG PERFUSION During an organ transplant, time is of the essence and Ex Vivo Lung Perfusion is no different. Lungs are explanted, evaluated, and shipped as quickly as possible to our specialized EVLP facility. The EVLP team works around the clock to assess the lungs, share data with …

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organmap
Living With CFTransplants

The Bible for Transplants

Lots of great information in The Scientific Registry of Transplant Recipients (SRTR) The registry supports ongoing evaluation of the status of solid organ transplantation in the United States. It is administered by the Chronic Disease Research Group of the Minneapolis Medical Research Foundation. SRTR responsibilities include designing and carrying out …

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