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! a Beautiful Example
I was surprised last summer when I received a letter of gratitude in my LinkedIn mail. 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 …
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 …
Tamika Grubbs RN Here to Help our Cystic Fibrosis Community!
Hello, my name is Tamika Grubbs and I am a CF nurse consultant with over 4 years of experience. In the past, I served as an Adult CF coordinator for Central Florida Pulmonary Group, CF Clinical Regional Specialist and CF Manager for Kroger Specialty Pharmacy (formerly TLCRx Pharmacy). I am …
Fertile Areas for Experimentation: a New App for Cystic Fibrosis!
One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …
Amber’s Cystic Fibrosis Miracle
Introduction My name is Amber Newman and I’m twenty-five years old, soon to be twenty-six. I was diagnosed with CF when I was seven months old due to failure to thrive. I’ve been a member at CysticFibrosis.com since I was twelve years old. I’ve been able to connect with an …
Cystic Fibrosis treatment: Foam roller benefits – a member blog
I recently received some questions about foam rolling, as a result of a personal blog Top remedies or tools for CF related ailments, which listed foam rolling as one of my favourite CF remedies. Questions such as “What is a foam roller?” and “How does one use it?” – Here is a bit more …
Member post: goals and managing expectations with Cystic Fibrosis
A little story: When I was 12, I participated in a big folk dancing competition through my school. It consisted of several hundred participants and we danced non-stop for hours in front of a selection panel. An elite group of dancers would be chosen to go on a week-long vacation …