My Journey with Cystic Fibrosis: Overcoming Obstacles and Embracing Self-Care – by Zain Arif
Life-Changing News Hello there! I’m Zain Arif, a 19-year-old who’s been living with Cystic Fibrosis (CF) since I was just a baby. Being diagnosed with CF wasn’t easy, especially in a country where the disease wasn’t commonly known. But thanks to a determined doctor who recognized the symptoms, I was …
Life is Good! – by Kevin Munroe, 65 years young
*Note from the editor: Meet Kevin, a 65-year old “Grampy” with Cystic Fibrosis! My first thought was: I bet he has some interesting stories to tell! Well, for his article Kevin submitted a delightful collection of interactions and hilarious anecdotes from his life. Hope you enjoy reading them as much …
Tips on Taking Care of Your Lungs with COVID-19 (from a successful Cystic Fibrosis patient)
The cystic fibrosis community is at high risk for serious complications from COVID-19. Through a recent survey of the online patient and caregiver CysticFibrosis.com community (200+ participants) conducted by the non-profit CFTechnology.org, we discovered that CF patients are faring quite well at home. This is in great part because they …
Gratitude: came in my inmail!
We all can reach back in our memories and think of something or someone who made a difference and just quietly “give thanks”. Blake (Lance2020) actually took the time many years later to thank us at CFTechnology.org for the gift of a flip camera, this was a digital camera before …
Why Cystic Fibrosis and Blockchain? by LittleLab4CF
LittleLab4CF David Orthman, PhD How can BlockChain facilitate Pharmaceutical companies go-to-market strategy? The greatest barrier to doing business is inertia. The red tape will stop or stall any new commerce. BlockChain can offer the simplest path from product to payment and delivery. First and foremost, Pharmaceutical companies eschew re-inventing wheels. …
LittleLab4CF on the potential of an enormously valuable Genomic Diary
This blog was reproduced from a post by LittleLab4CF , a Super Moderator on the cysticfibrosis.com forum. “I found myself in a lively discussion with one of my doctor’s about the business of Genomics and what they really want. Dr. “Nancy” was remarking that she’d completed her Christmas shopping, buying 23&Me for pretty much …
Gratitude! Remembering Blake’s example!
We all can reach back in our memories and think of something or someone who made a difference and just quietly “give thanks”. Blake (Lance2020) actually took the time many years later to thank us at CFTechnology.org for the gift of a flip camera, this was a digital camera before …
An Interview: Jeanne Barnett and RXDigitalMarketing
Buddy Scalera of RXDigital Marketing interviewed Jeanne Barnett (founder of CysticFibrosis.com) on August 31, 2017. If you are curious about the community at CysticFibrosis.com, where it came from and where it is positioning to lead the way, these are the topics of an interview Jeanne Barnett (founder of cysticfibrosis.com) had …
The Unidos pela Vida Institute – spreading knowledge about Cystic Fibrosis in Brazil
Join us today as we learn more about the Unidos pela Vida Institute for Cystic Fibrosis in Brazil. Thank you to Verônica Stasiak and Pamela Mazini Stürmer for supplying us with the below information, translated to English. We wish them good luck with the great work they are doing to spread awareness …
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 …