3dprotein
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 …

READ MORE →
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 …

READ MORE →
image
Living With CFResearchRespiratory DiseaseVideo

Webinar: Infection Prevention During Bronchoscopy

Laurence Muscarella Ph.D. and Atul Mehta M.D. A detailed webinar (71:30 minutes) can be viewed online. Highlights: The latest research into bronchoscope cross-contamination issues. Most frequent causes of infection risks Most importantly:  what everyone who uses bronchoscope should know to prevent risks Click to view the Webinar    

READ MORE →
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 all …

READ MORE →
DiagnosisLiving With CFTechnology

Flourescent Sensor is a new Low-Cost Tool for Cystic Fibrosis diagnosis

Read the article here on sciencedaily.com “Scientists have developed a new diagnostic test for cystic fibrosis. The new device provides a cheaper, easier way to detect levels of chloride in sweat, which are elevated in cystic fibrosis patients.” “Cystic fibrosis is caused by two faulty copies of a gene that affects …

READ MORE →
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.    

READ MORE →
vertex
FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment 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 …

READ MORE →
lungs-37825_640
Living With CFTechnologyTransplants

Lung Bio-engineering Clinical Trial may benefit cystic fibrosis patients

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 …

READ MORE →
organmap
Living With CFResourcesTransplants

The Bible for Transplants: make data driven decisions about lung transplant

The Scientific Registry of Transplant Recipients (SRTR) helps patients make data driven decisions about their transplant, such as lung transplants in Cystic Fibrosis. 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 …

READ MORE →
globalgenes
GeneticsLiving With CFNews & EventsVideo

Rare Disease Patient Advocacy Summit

Later this week, Jeanne Barnett will be attending the fifth annual RARE Patient Advocacy Summit run by Global Genes in Huntington Beach, California. The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been …

READ MORE →