A letter from Dr Corey Nislow – the obligation to change the way research is done

Dear CF community, My name is Corey Nislow, I am a 51-year-old academic researcher who has spent the last 30 years studying how genes affect traits. For a bit of my background you can find me here: and here . My reason for writing is simple. Just over a …

cure e us

Cure-E-Us…Cystic Fibrosis 2018!

Cure-E-Us! Strange as it may seem in this time of healthcare anxiety, and a period of sustained political transformation during which our ways of seeing the world, understanding and caring for ourselves physically, mentally, and spiritually are being challenged, we may see this as an opportunity to future cast. Indeed, …


A Young Mom is Exploring BlockChain Technology

I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for …


Your Cystic Fibrosis Data is Valuable! Watch the Video…Take the Survey!

We hope you agree! Tell us what you think..Be Counted! Take the SURVEY NOW! Video by Lance 2020 ~ 1 minute Survey: 9 minutes


Equal Access to Treatment for All with Cystic Fibrosis in the US?

Just in from Tamika Grubbs: Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care. I am a …


TauriNAC Now Available

This summer, Sharktank Research Foundation and Planetary Biosciences released a product called TauriNAC. It contains NAC (N-Acetylcysteine), taurine, magnesium, green tea extract, vitamin C, and some other things. A study from Stanford University has shown that NAC helps lung function in CF patients. We designed TauriNAC with several objectives. We wanted …


A Conversation with Gunnar Esiason

Gunnar Esiason is the son of retired American NFL quarterback, Norman (Boomer) Esiason. He is twenty-six years old and living with cystic fibrosis. He is currently the director of the patient advocate program at the Boomer Esiason Foundation in Garden City, New York. Their mission is to heighten awareness, education …


A Brain, A Heart, Courage: the e-Patient community for Cystic Fibrosis

Back in 2010, Jeanne Barnett wrote about the e-patient, using the metaphor of the Wizard of Oz: it is still relevant today with patients in our cystic fibrosis community being very astute at learning, empathetic toward each other and courageous going forward with many new drugs for personalized medicine. Thanks to PharmaPhorum …


Orkambi has simply changed my life…a Cystic Fibrosis reflection

A member of our community with Cystic Fibrosis reflects on two years since starting Orkambi, a medication used to treat Cystic Fibrosis. This post was originally published on our forums by member RubyRoseLee. Two Years Ago “I’ll never forget the emotions I was feeling that morning. I had just gotten …

Spirometry test at clinic

Digital Spirometry and the Cystic Fibrosis patient

For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can …