Merely an observation since I have been the actual Denufosol drug for a few months . . . I think it helps from a cold getting really out of hand. Twice now, while I've been on the drug, I've had what I consider my classic symptoms of an on-coming cold. I can tell exactly when a cold is coming ...

http://www.cff.org/aboutCFFoundation/NewsEvents/08-06-Senate-Passes-I-ACT-Victory-for-CF-Advocates.cfm “Improving Access to Clinical Trials Act” Passes U.S. Senate in Victory for CF Advocates August 6, 2010 The U.S. Senate last night passed the “Improving Access to Clinical Trials Ac...

It's been long overdue and I think it's time for a Thankful Thursday... I'm thankful for the advances in CF medications. Yesterday I had the opportunity to be pre-screened for a clinical drug study for a new anti-inflammatory. The hope is that this new drug will have all of the benefits of ot...

So I headed to the Adult CF clinic at Northwestern/Children's Memorial today for my first study visit after starting on the actual drug in the second phase of the denufosol trial. I was so psyched . . . after hearing about the fantastic PFTs people were having on the drug . . . So I blow and blo...

Hello friends, Okay. I know there are much higher profile study drugs garnering a lot more enthusiasm right now, but I must tell you that I think the GSK Anti-inflammatory drug that I received in the study was amazing and could help a LOT of you. It is a short 28 day study. There are a handful of v...

I have been on the Mannitol Clinical study for a year now. Thursday was my last clinic day and end of the trail for me. I was asked to continue it but I declined and will explain later why.   The first six months were double blind, the last six months you get the real deal.   The first...

part of having CF is getting to particpate in studys with new drugs and getting the money for it!! I always get so excited when my doctor tells me there is a new study I qualify for!

Well, I've been off the study drug for 8 days now. I felt pretty good in the interim, though I could feel the old sensations coming back. Finally early evening last night i could feel that little hint of irritation right at the bottom of my bronchi. I found out I could start back on inhaled antibiot...

Hello all. This is my first blog on this (or any other) forum so please be gentle! I just felt the need to air a few frustrations over the clinical trials (or more specifically lack of them) that appear to be going on in the UK. I realise this frustration could be borne out of a lack of informat...

I thought having to study for finals and writing papers was enough stress for the week. But my body had other plans... around friday I was hit with some sort of sinus and/or cold symptoms, runny nose, itchy eyes, sneezing, etc. I thought switching my otc allergy meds would do the trick but it only g...