NEWS HEADLINES AND CF

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anonymous

New member
Hi to all,

I have been away for a week, thinking when i return that this topic would have been discussed since its the best news i've heard.

Anway, the night before we went outerstate there were news headlines stating ( A BREAKTHROUGH IN GENE THERAPY). The most well known hospital in Sydney Aust called (RPA), have had a brakthrough using gene therapy to treat Heamophilia(not sure of correct spelling). It was successful, and it was stated it was the biggest brekthrough they have ever had in gene therapy. They are now beggining clinical trials, and said that they will be able to treat many thousands of genetic disorders. Out of five that were mentined on the news CYSTIC FIBROSIS, was one of them. They stated that the doc's at the RPA were very confident that many positive outcomes will arise, and hopfully soon.

Have hope everyone<img src="i/expressions/heart.gif" border="0">
Eli (sorry forgot to log in)
 
S

skh

Guest
Thanks for sharing Eli. I am so hoping this is going to be GREAT news for cf'ers.

Sue
 
R

RoyalPrince

New member
I'll be the first in line if they want to do clinical studies here in the states...

*raises hand* OO, OO pick me, pick me!!!
 
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thelizardqueen

New member
I would worry about being a guinne pig for gene therapy. I read an article in our local paper a few years back, where they were doing clinical trials for gene therapy for a respiratory illness (it hinted to CF), and the one person they tried it on ended up dieing. I think I would rather wait till its a proven thing that they can do, before volunteering myself.
 
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RoyalPrince

New member
Liz... I never heard of that... makes me rethink my volunteering... on the other hand its gotta be someone on the front line to "take on for the team"... LOL

*slowly puts hand down and looks around with a sheepish grin*
 
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thelizardqueen

New member
LOL. That's the problem with clinical trials - someone has to be the guinne pig to see if it works. I just know that it ain't gonna be me.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Think about the unknown complications that may arise from this procedure before they perfect it.
 
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IG

Guest
Not sure if this is what she's (or he) talking about but doing a google search on RPA and gene therapy turns up this.
<a target=_blank class=ftalternatingbarlinklarge href="http://news.ninemsn.com.au/article.aspx?id=91533">http://news.ninemsn.com.au/article.aspx?id=91533</a>
 
F

Faust

New member
I will put myself on the line, and during the administration my vial of neb will be hit by lightning and I will inhale drastically altered neb, and I will turn into a super mutant villain and you all will be my lunger slaves!!!
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>



I would worry about being a guinne pig for gene therapy. I read an article in our local paper a few years back, where they were doing clinical trials for gene therapy for a respiratory illness (it hinted to CF), and the one person they tried it on ended up dieing. I think I would rather wait till its a proven thing that they can do, before volunteering myself.</end quote></div>



What if we all did that? How would medications ever get approved?</end quote></div>


Like I said - someone's got to be the guinne pig, and it won't be me. My way of thinking is my way of thinking - not everyone has to agree with me. There's always two sides to everything. I'm sure there are people who would want to test it out, just like there are people who wouldn't want to. I'm one of the people who wouldn't want to. Call me chicken if you'd like.
 
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RoyalPrince

New member
Amy... thanx for the info.. i'm about 4 hours away from there in wv so i think i may check that out...

i remember way back when i did a study when i was younger i had to use a syringe to get the medicine out of a tiny glass vile... i'm not real sure but i think it was the tobi study... i don't mind doing the studies if i feel they will learn a great deal from me and i have the time...besides you get treatment for free and sometimes even paid... however if the gene therapy involves more risks then it probably comes with bigger potential rewards (healthwise)... i think if (and thats probably a big IF) they offer it in my area and i like what they have to say, i would do it... that would really suck to die from a complication or miscalculation but at least i would be helping, besides i could die being hit by a bus tomorrow and no one would learn a thing except the importance of looking both ways... hehe
 
E

eli

New member
Thank's Candice for adding the link.

I should have known Sean D, would like to know where i got the info from.
I actually heard it on the local news, as it was all over the news.
But that is the correct link, thanks again.

Eli<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Scarlett81

New member
Liz,

You are a CHICKEN!!!

I'm sorry, that was totally corny and unnacceptable. BY the way, I was obviously kidding.
I'm on the fence with this one. I understand not wanting to risk doing a trial. BUt, as Amy said, someone's got to do them. One thing is, with the DNA trials from ten yrs ago, the ones where a few patients died, I believe that a risk of that magnitude has passed. There's probably a degree of risk, but not like it was ten years ago. They were kind of blindly using host viruses to inject the DNA, and that's why patients couldn't fight them. Now they know so much more about which host viruses to use.
Either way, all this talk makes me excited and worried at once. I have to believe, but I can't get my hopes up.
 
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