friendship

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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conference-303369_640

North American Cystic Fibrosis Conference 2016

The 30th annual North American Cystic Fibrosis Conference was this October in Orlando, FL and offered more more than 60 sessions on topics related to CF. It was attended by physicians, research scientists, nurses, respiratory and physical therapists, social workers and pharmacists and more. The summary from the session called, …

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research

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

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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bluetooth

Bluetooth-enabled Tech Shows Promise for Adherence and Lung Health

A device to monitor inhaled antibiotic use by CF patients and transmit 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: For …

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lungs-37825_640

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

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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copper

Copper in Hospitals to Limit Cross-Infection

Using copper on high-touch surfaces in hospitals may reduce Hospital-Acquired-Infections, according to a report published in the American Journal of Infection Control. The New York Times article describing this report says: …on average, fixtures in copper-equipped rooms had concentrations of bacteria about 98 percent lower than in rooms furnished with …

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mac

Distinguishing Relapse from Reinfection in MAC

In the News A study was published this month in the Annals of the American Thoracic Society (ATS) that looked at the differences between relapse of infection and a reinfection of the lungs by Mycobacterium avium complex (MAC). The study was not done with CF patients, however, the findings may …

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