Search results

Andrei gave us the gift of the News Feed on the homepage. The feed comes from local newspapers usually reporting about stories of interest fund raisers etc. and also from Scientific Journals and news sites all over the world. I feel very positive when I read about the research being done for...

I'm wondering how you keep track of all your medical information. Doctor's visits, PFT scores, Medication amounts and times, exercise, nutrition etc. Do you use computers, the internet, pen and paper, marble notebooks?

My son just called me telling me his 3 yo daughter is being tested for CF as i write this. How? There is no history in my family or my ex husbands family. He sounded frantic on the phone. He lives in Louisiana and I live in Oregon. I feel helpless. I am a nurse and i am not prepared for the...

We'll be back soon! Newer and Better! Jeanne

AZTREONAM LYSINE FOR INHALATION IN PATIENTS WITH CYSTIC FIBROSIS will be coming soon. How did you find out about it? We'll poll for other drugs coming to market in later polls. Jeanne owner/ founder CysticFibrosis.com

This is an exciting election here in the US. I know my cousins in Denmark love to talk about it too. Healthcare is in the forefront as we listen to the candidates debate. Why do you think a candidate has the best healthcare platform? How will this benefit our e-patient community? Jeanne

Some of you may comments on this one...

This poll suggestion is from Chris cdale613 Our polls give us new perspectives on our treatments. I know some want to know the models of the Vests we use, send me the poll and we'll check it out. Thanks for sending it! Jeanne

Thanks everyone for taking our polls. I think we all find it interesting to see how people weigh in on the different topics. I am working on a new design for the site with a page showing the results of our previous polls. We have so much to learn. Jeanne owner/moderator

We are deeply appreciative to the community who has answered the call to participate; your time is precious and valuable. The response to the adults with CF category was overwhelming, and this age segment filled immediately. Our market researchers still need prospects for the following age...

If you'd like to sign up for a PAID Market Research Survey, please click here for details: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/survey.cfm">PAID MARKET SURVEY</a> This company has abided by our Code of Ethics and they are working with us.

This just came across my desk from the PRNewire. I didn't know if everyone had the opportunity to see it -- I think its great!! Cystic Fibrosis Foundation Named Charitable Organization of the Year by USA Track & Field BETHESDA, Md., Oct. 29 /PRNewswire-USNewswire/ -- The Cystic Fibrosis...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/cftube/index.cfm?idvideo=1182790391">RESEARCH NEWS HERE!</a>He's our first "researcher" on the CFTube...Make him viral...send him all over the Internet. These researchers are our chance for better medications...

I'll be writing my blog about who we are, where we're going and all the exciting new features coming up! Today, I moved some prayer requests to the Prayer Section. We will be changing the format soon, but since this ADULT section is the place most people enter to find news, support, education...

This is a thread for new members to introduce themselves! We are sure to welcome them. Who you are threads too! Welcome! Jeanne

This afternoon, we're setting up a new server and there will be some down time. Hopefully, we'll be down for only a few minutes. Thank you for your patience. Jeanne

Visit the chat and see the terrific emoticons...gift of Mockingbird! Wow! Fantastic! You are the potter...our chatroom the clay! Thanks! Jeanne

We have a new survey going on now. Check your email and if you didn't receive the survey: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/survey.cfm">Click here to sign up and we'll send you the general products survey.</a> Jeanne

I think we, at this site, could be a big political force to make sure states and countries do newborn CF screening. I know so many of us are heartsick when we read in the Newly Diagnosed section how hard it is to get some doctors to authorize/prescribe the Ambry Panel. If you live in NJ, like...

Ennio was due to start as our Cold Fusion programmer....next Monday. I emailed him on Sunday with all the problems we had on the site and he said "I know..." Two simple words...spoke volumes to me. He was watching us and he cares! He told me he got permission from his professors to leave...