Living With CF

Going Back to School with Cystic Fibrosis (from our Archives)

Monday, August 25, 2008 written by Lauren Beyenhoff based on a survey at Cysticfibrosis.com FreePics CF Goes Back to School Sharpened pencils, new backpacks and notebooks; ‘Tis the season for heading back to school. Sending a child off to school for the first time can be an emotionally charged event. …

READ MORE →
featured_memberLiving With CFNews & Events

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. …

READ MORE →
FinancialGeneticsLiving With CF

LittleLab4CF (our own Geneticist with Cystic Fibrosis) Helps us Understand Pharma/Patients and Blockchain

How can the data-sharing capabilities of BlockChain lead to lower development costs and increased efficiency? BlockChain can be compared to a suite of software utilities like Microsoft’s Office package. Office software and similar products have a word processor, spread sheet, product promotion and business presentation applications like PowerPoint that are …

READ MORE →
genomic-phenotypic-diaries-fig2
APP for CFLiving With CFSurvey

A New Model for Patient Engagement for Cystic Fibrosis Patients and Caregivers

Our blog appears in the DIA global forum. It has the results of our initial survey (which took place from 2017-2018) where 1200 of you responded, both patients and caregivers. CFTechnology.org, a non-profit, global online community of over 18,000 cystic fibrosis (CF) patients and caregivers, has launched a study to …

READ MORE →
Survey_graphic
APP for CFLiving With CF

CURE-E-US: Our CF community has an UNMET NEED (Part 3)

The survey: “Discovery, Research, and Profit”  has ended and I have presented at the World Orphan Drug Congress in Maryland. I presented the story of how the survey came to be, and our motivation for wanting to move forward with building an app as we have identified an unmet need.  You …

READ MORE →
Living With CFNews & EventsUncategorized

Cure-E-Us: World Orphan Drug Congress Part 2

  The Initial Industry CFTR Screen Programs consisted of Epix, Genzyme, Galapagos, Fold, Amri, Aurora, and CombinatoRx Preston Campbell the CEO of the CFFoundation spoke first about the history of the Foundation but the next part was about deciding on the companies that could  begin the work of Precision Medicine.  …

READ MORE →
jeannebarnettraredrugscongress
AdvocacyGeneticsResearch

Cure-E-Us: Imogene at the World Orphan Drug Conference 2018 Part 1

World Orphan Drug Conference 2018, April 25-27 (Part 1) Getting to the Conference! I drove from northern NJ …5 hours along the tiresome NJ Turnpike, over the Delaware Memorial Bridge, through Delaware which seems like the wink of an eye and then through Maryland, only to get confused…is it 695,95, …

READ MORE →
Cure E Us
Living With CFTechnology

Cure-E-Us Where is our Survey Leading?

Of the 1112 participants for our survey “Discovery, Research, and Profit” www.CFTechnology.org only two claimed to be physicians! One from Florida and one from California. 53% are patients, and 44% are caregivers. Who has the authority?  Since 1996, when our forums at CysticFibrosis.com began, you may have wondered: “Where are …

READ MORE →
AI
FinancialGeneticsLiving With CF

Artificial Intelligence (AI)as told to Imogene by LittleLab4CF

Text by LittleLab4CF…helpful links added by Imogene. Big data was applied to the first human genome that involved many international efforts. Basic genetics It was cost compared with the first atomic bomb. Craig Venter cut through it with AI and massively parallel processing. A virtual human is the end game …

READ MORE →
Living With CFNews & Events

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 …

READ MORE →