Hi Everyone!
Apologies for not updating you on week 37 news. It has been such a busy last 2 weeks for me and Jeanne (imogene). I traveled to the US last week to present with Jeanne at the ePatient connections conference. The presentation went extremely well and the days that followed were none stop meetings with industry leaders. It was very overwhelming and opens up so much opportunity for our wonderful community. You all deserve it!
If you are not following us on Facebook yet, I suggest you start doing so as this is where all my updates are going! Just like our page and you will get them in your feeds. I am also Tweeting most of them...so follow me.
Some highlights the past 2 weeks:
- Chris
Apologies for not updating you on week 37 news. It has been such a busy last 2 weeks for me and Jeanne (imogene). I traveled to the US last week to present with Jeanne at the ePatient connections conference. The presentation went extremely well and the days that followed were none stop meetings with industry leaders. It was very overwhelming and opens up so much opportunity for our wonderful community. You all deserve it!
If you are not following us on Facebook yet, I suggest you start doing so as this is where all my updates are going! Just like our page and you will get them in your feeds. I am also Tweeting most of them...so follow me.
Some highlights the past 2 weeks:
- We are pushing the importance of "value of time" to CFers and CF caregivers. Read this and this.
- NovaBiotics Receives Orphan Drug Status from the FDA for Lynovex [Facebook]
- Yukon to pay for teen's $350K Kalydaco drug to treat her cystic fibrosis condition http://t.co/HgX5Lnd49c
- CFTR gene discovered 25 years ago this month http://t.co/nZ1nVEpsyq
- ProQR IPO went public this week [Facebook]
- We opened a new forum to help CFers and their initiatives [Facebook]
- The first baby has been born in Ireland where a technique called Pre-Implantation Genetic Diagnosis (PGD) was used. [Facebook]
- A 76-YEAR-old woman diagnosed with cystic fibrosis [Facebook]
- Importance of exercise as a treatment against CF … great discussion on our [Facebook]
- Recent immunological breakthroughs in Cystic Fibrosis [Facebook] [LinkedIn]
- Hundreds of children across US sickened by severe respiratory virus http://t.co/qBHmTN7yXH
- Vertex Announces Upcoming Presentations of Data at North American Cystic Fibrosis Conference - October 9 to 11, 2014 http://t.co/PfpXx9pgSI
- Insmed to Present ARIKAYCE as Cystic Fibrosis Treatment for Pseudomonas Infection http://t.co/T8viEeCcLb
- Chris