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The survey results are in and have been sent to those who requested but I am still working on the qualitative results of our recent survey in particular Question 4: We are interested in the top questions YOU want answered regarding cystic fibrosis, patients, and caregivers. Please tell us what...

Dear Jeanne I won the Best Achievement Award last night http://www.peoplesbookprize.com/ http://www.peoplesbookprize.com/winners2014.htm Say thanks to everyone in your team. My speech was filmed by Sky News so that should be available on the PBP website soon. Thanks for sharing on...

http://cysticfibrosisnewstoday.com/2015/03/23/uk-adult-cystic-fibrosis-patient-population-predicted-to-increase/ This article is focused on the UK...I wonder if not just patients living longer but better tests for mutations and many more mutations uncovered will also increase the population...

Dear Jeanne, Hope all's well with you... I need your help please to win a book prize for my CF memoir ‘How have I cheated death?’ (available in paperback, e-book and audiobook)… The UK People’s Book Prize 6th Awards black-tie ceremony is on 27th May 2015 at Stationers’ Hall, London, which...

This is an interview my daughter Sarah did many years ago...with Lisa Greene. Lisa is a most amazing MOM of two children with CF! Days must be challenging for Lisa as her husband surprisingly died a few weeks ago. https://www.youtube.com/watch?v=c5hRLWgPLaM May God give her strength and...

Well the Views have been "corrupted" on the database...and DANK FIXED THE PRoblem! It means a lot to us to see how busy we really are! CysticFibrosis.com is in a sense the Wikipedia of CF anecdotal information on patient/caregiver healthcare...with over a million searchable messages and 17000...

Our Code of Conduct was last updated in 2007. It was well written by an ANGEL some of you may remember LightNLife! I miss her...thinking of her in her final reward thinking about us just makes sense to me...the communion of saints! One of the prime rules allows and even encourages...

http://news.yale.edu/2015/04/27/yale-scientists-use-gene-editing-correct-mutation-cystic-fibrosis

Dear Jeanne, I'm working on securing visibility to raise funds to produce a documentary 'A love worth giving' on transplant doners for CFers which we all hope to bring about a change to the current system of 'opt in' for most countries. The deadline to raise the necessary funds ends on 24...

PADAC@fda.hhs.gov Dear Ms. Barnett, Yes, this is the email address to send all written submissions to for the May 12th PADAC meeting. Thank you, From: Jeanne Barnett [mailto:jeanne@medrise.com] Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient...

These are from Jenny...she will comment! Salt and light, Jeanne

Have you taken the survey? Our team did a great job of including everything patients and caregivers could need and want! But we found out in the comment section..there are even more possibilities! Have you weighed in? https://www.surveymonkey.com/s/HY9CR7

Take our new survey to see what the community needs mostCFTechnology our 501 (C) (3) is looking to find out what our community wants and need most. Please take our survey (8-10 minutes). Let us know what you think! SURVEY Thank you, Salt and Light, Imogene - See more at...

CFTechnology our 501 (C) (3) is looking to find out what our community wants and need most. Please take our survey (8-10 minutes). Let us know what you think! SURVEY Thank you, Salt and Light, Imogene

The University of Texas brings us this good news: http://www.infectioncontroltoday.com/news/2015/03/new-cystic-fibrosis-research-takes-aim-at-pseudomonas-aeruginosa.aspx

Hi Everyone, Ennio is back working to make sure we are up and running. We had a server problem...we ran out of space! Lucky for us, Ennio is helping with this. We will be on a new server in a short bit, hopefully without any more down time! I wish everyone in the United States a break from...

You may learn something about tax forms and CF from Lauren, Julie, and Victoria on our KNOWCF videos: http://www.cysticfibrosis.com/knowCF/details.cfm?articleID=7

Love Michael Graves for this!

http://cysticfibrosisnewstoday.com/2015/02/11/arkansas-medicaid-settles-lawsuit-kalydeco-cystic-fibrosis-drug/

http://www.pbs.org/newshour/bb/push-use-human-genome-make-medicine-precise/