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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...

Thanks again to all the HOLs who continue to keep us fresh, updated, and relevant! Carol: I used your testimonial in a blog I am writing for a new group I have been invited to join...The Atlas of Caregivers. Windex: I smiled to myself as you try to figure out the technical meaning to "salt and...

Glad to report the video got the funding it needed! Looking forward to seeing it...

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...

MommywCF, Last Sunday our minister Rev. Mark King (Marble Collegiate Church, NYC) gave a beautiful sermon on living life to the fullest. He gave as an example of someone with a life threatening disease as knowing how to live life and appreciate every moment. I am sending him this beautifully...

Hi Megan: You can email me at info@cysticfibrosis.com. Sorry this has been a problem! Salt and light, Jeanne

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

Above: Thanks for reminding us...April 27th is MONDAY already...it is exciting to know/believe that a committee wants to hear the anecdotal data that goes with the quantitative data...but then with 3 million messages since 2003 held on this database...just under a million messages...

Hope matters! hopefully the science and the anecdotal evidence will string together into a successful launch. It is important to imagine this is just a beginning...more and more drugs will be developed in the realm of personalized medications and our patient community is on the forefront...

You are welcome! Just giving all the opportunity.

Great Stephen...I thought of you throughout this process! So glad you are feeling sooo much better.. Salt and Light, Imogene

Wondrful! Grammakaky, Let's keep it moving!...if you have a story to tell you still have time to send it! We are fortunate in the USA to have this committee who will listen...Of course the science trumps all...but the anecdotal evidence matters...and pharma and the FDA are listening! Go for...

Oh no! This is such sad news for our friend Lisa and her children. Lisa has a strong faith. I loved to share in it when we have been together. May the God of mercy fill her with strength and give her family the awareness to experience all the love and prayers surrounding them now and in the...

I hope Tim gets a response for this...I have lots of ideas of things we need to know...for transplants..an instructive documentary would be great!

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...