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 →
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 →
blockchainimage
Living With CFNews & Events

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… …

READ MORE →
digital camera before cell phones
featured_memberNews & EventsUncategorized

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 …

READ MORE →
RxDigitalMarketing-logo2
featured_memberNews & Events

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 …

READ MORE →
social media feature pic jan 2017
Living With CFNews & EventsSocial Media

New on Cystic Fibrosis Social Media (@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 …

READ MORE →
Grubbs-headshot1497372210
Advocacyfeatured_memberLiving With CFNews & Events

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 …

READ MORE →
thedatawillseeyou now
AdheranceAdvocacyfeatured_memberNews & EventsTechnology

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 …

READ MORE →
charlesdarwinImogene
Living With CFNews & EventsResearchSupportTechnology

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

READ MORE →
T alpha 1
Clinical TrialsLiving With CFNews & EventsRespiratory Disease

New drug (Thymosin alpha 1) discovery: potential for Cystic Fibrosis treatment

According to an article published on www.sciencedaily.com, researchers have discovered a potential new drug to treat and stop the progression of cystic fibrosis. While many other promising drugs are in the pipeline, we here at cysticfibrosis.com will be keeping a keen eye on further developments of this medication. Read the …

READ MORE →