CF Podcast #123: Exercising with CF

“If it’s not important, breathe it out. What’s important, breathe it in.”

In this video, Emily Schaller, a 31-year old living, breathing, and succeeding with cystic fibrosis shares her life-changing relationship with exercise and her determination to spread awareness about Continue reading CF Podcast #123: Exercising with CF

For new Rhode Island firm, peptides hold hope for disease-altering cystic fibrosis treatments

It’s been nearly two and a half decades since the gene associated with the inherited disease cystic fibrosis was discovered, paving the way for disease-modifying drugs. In that time, only one such drug has been approved in the U.S. and Europe – Vertex’s Kalydeco. And that drug is only Continue reading For new Rhode Island firm, peptides hold hope for disease-altering cystic fibrosis treatments

Cystic Fibrosis: New Assay May Help Individualize Care

A rapid and quantitative assay for assessing function of the CFTR gene using intestinal organoids has been developed, according to a study conducted by Johanna F. Dekkers, MS, from the University Medical Center in Utrecht, the Netherlands, and colleagues. Continue reading Cystic Fibrosis: New Assay May Help Individualize Care

Boomer Speaks Out on Sarah Murnaghan and Juvenile Lung Transplantation

Recently, Sarah Murnaghan (10) and Javier Acosta (11), both children battling cystic fibrosis, won federal lawsuits to be placed on the adult lung transplant list. The organ donation allocation system does not usually allow children under the age of 12 to be placed on the adult list, making it less Continue reading Boomer Speaks Out on Sarah Murnaghan and Juvenile Lung Transplantation

Tips For Dining Out For People with Cystic Fibrosis

So, I’ve always been a bit squeamish about certain things.  As a young child, it was bugs, worms, snakes and food that I considered gross.  As I got older, add in items that weren’t as clean as they could be.  But, back in those days, there was no hand sanitizer.  You simply went to the restroom Continue reading Tips For Dining Out For People with Cystic Fibrosis

Proteostasis Therapeutics Presents Preclinical Data on Parkinson’s Disease and Cystic Fibrosis Targets at EMBO Conference

Proteostasis Therapeutics, Inc., a company developing novel therapeutics that regulate protein homeostasis to improve outcomes for patients with neurodegenerative and orphan diseases, today presented data on the Company’s preclinical targets for Parkinson’s disease and cystic fibrosis at a Continue reading Proteostasis Therapeutics Presents Preclinical Data on Parkinson’s Disease and Cystic Fibrosis Targets at EMBO Conference

Adults with CF Need Close Colon Cancer Screening

With cystic fibrosis (CF) patients now living well into adulthood they are at risk for developing adenomatous colon polyps and should be screened early and often, researchers said here.

In a single center study where adult cystic fibrosis patients underwent screening colonoscopies, Continue reading Adults with CF Need Close Colon Cancer Screening

The Importance of Understanding

I just got to visit with a good friend from out of town who has CF. There is something to be said for being understood so well by another person. For someone to totally “get it” usually only happens when talking to another person who has something in common, in my case, cystic fibrosis and Continue reading The Importance of Understanding