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Hi guys,
Just wanted to give you exciting news about finally (after nearly 2 years) getting to try Denufosol (I'm about 95% sure I have the actual med, not the placebo).
You can follow more on my blog if you want, but I thought some might be interested to hear what's up so far.
From...
Hi guys,
I know several of you have been on denufosol (or your child has).
I'm wondering if you could tell if you were on placebo or not? And did you turn out to be correct?
I'm pretty sure I'm on the drug, but of course, I'm curious to know how everyone else felt.
Take care and thanks in...
<a target=_blank class=ftalternatingbarlinklarge href="http://www.reuters.com/article/pressRelease/idUS129531+09-Oct-2009+BW20091009
">http://www.reuters.com/article...9-Oct-2009+BW20091009
</a>
INDIANAPOLIS--(Business Wire)--
The Riley Hospital for Children Cystic Fibrosis Center is the first...
Surfaces regularly used by teachers had 10 times more bacteria per square inch when compared with other professions.
WSJ Health Blog:
With the spread of swine flu and mounting concern over drug-resistant superbugs like MRSA, it's no wonder we are a nation of germophobes, as I write in my...
So this article is cool for several reasons:
1. A promising CF med has reached its enrollment goal for its Phase III trial. What does that mean? It means we've gotten enough CFers in the clinical trial so once the trial is finished, the data can be analyzed and submitted to the FDA (if the...
It has been said that clinical trial participation is just as important as raising money in getting new medications to treat CF to the market.
This is a good step to improve clinical trial participation - something that needs to increase in our CF community!
<a target=_blank...
Thanks to all who participated in Phase II studies of PTC 124 (ataluren), the drug is now moving to Phase III.
With so many drugs in the pipeline, this just further emphasizes the need for <b> <u>EVERYONE </u> to participate in CF clinical trials. </b> The more people participate, the faster...
Hey guys,
This may be a question for Julie or anyone else with good knowledge on this topic.
I have heard that government funded (Stafford, Grad Plus) loans are forgiven if you are permanent disability.
Is that true? I can't find info on this anywhere.
Obviously I'm no where near...
<b><u>One of the biggest barriers sitting between CFer's and new meds is clinical trial participation. </b></u>
I know many are doing their part by participating in clinical trials. I've heard amazing stories from those in denufosol, vertex, gilead trials, just to name a few.
I'd love to start...
We talk all the time about the fact that CF gene mutations don't predict clinical outcomes.
This article gives a great perspective on why this is the case:
You can click on my twitter link below (if you follow me, you'll get more great news like this daily) to see the story or:
<a...
Anyone else see Hannity last night where Lynyrd Skynyrd talked about the fact that he has CF?
A friend of mine called me to tell me to turn the show on and I nearly fell out of my chair.... I had never heard this before.
I was involved with the making of a few videos designed to help encourage and inspire CFer's around various topics that impact us on a daily basis.
The target audience is 13-17, but I think the testimonials impact every age.
I just saw the videos for the 1st time today and I'm incredibly...
If for whatever crazy reason you don't RSS feed my blog, I have just posted the latest news about a long-awaited CF drug <img src="i/expressions/face-icon-small-smile.gif" border="0">
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