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 …
DIY nebulizer sterilizer hack for Cystic Fibrosis treatments (member story)
**Note: this is not medical advice and this method has not been approved by any medical professionals or suppliers. It is just a workaround method used by someone with CF. It should only be tried on nebulizer parts that can be boiled** My DIY nebulizer sterilizer hack I have a confession: …
Fashion tips and favorite products for my Cystic Fibrosis body
With CF, unexpected body changes can make getting dressed in the morning a frustrating experience. Exhibit A: What size will I be in the morning? Although your friends may remark that they too would ‘love to eat anything and not gain weight’, or declare that if they had ‘your figure …
Survey: Future Casting for our Cystic Fibrosis Community! (Updates)
Thanks to 860 participants for taking our survey at www.cftechnology.org. A survey can be a tool to future cast! and this one is doing just that. Most of the participants are from the USA (90%), though we have invited a global community! 49 states are represented and the most participants …
A New Hope for CF! (Planetary Biosciences Review – Jan 2018)
To brighten this post up, I will review the exciting supplements Indrepta and TauriNAC using Star Wars parlance… I’m a 46 year old CFer with my original lungs, living in London, England. Following a virus in November last year, the Phantom Menace of mucous was giving me a hard time …
Blockchain, Cystic Fibrosis and Linnia
I want you all to know we are looking into the Blockchain company Ethereum and this email suggests we have similar goals. Currently: 781 of you have taken our survey at www.cftechnology.org and 90% agree: “We should be paid for our valuable data.” Read how the missions match up nicely… …
What’s new on the Cystic Fibrosis social media pages (@KnowCF)?
What’s new on the Cystic Fibrosis social media pages (@KnowCF)? We are active on social media – want to know the latest news? Please follow the links to see what is new on our Cystic Fibrosis Social Media channels. Post your own comment – or just see what others are …
Getting paid for all the work it takes being a patient or caregiver with Cystic Fibrosis
You never do. Instead, other people get paid for your work: all the treatments: meds and trials, devices, hospitalizations, doctors and health care providers. BUT Perhaps you don’t care…this is the system that has worked since the Hippocratic Oath came into being, declaring the doctors at the helm. Through the …
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: www.creativedestructionlab.com/people/corey-nislow/ and here scholar.google.ca/citations?user=n1e6LlcAAAAJ&hl=en . My reason for writing is simple. Just over a …
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, …