possible cure for cf on the horizon?

S

SaltyAndSweet

New member
Just curious about the difference between this study from PTC Therapeutics and the study started years ago by Copernicus Therapeutics. Does anyone understand the science of it and could explain it to me?

I actually participated in the Copernicus study many years ago, possibly in 2000. A couple of years after, a local news station did a news report on it. I'll post the link, but be warned, the media twisted and turned my words to make it sound more tragic. A few things were quoted that I would have never said... I know that CF does not cause leaky lungs. Do not know where the heck they got that one!

The study was done in Denver, but the only remaining article out there is from a sister station in Grand Rapids. Oh, and yes, I did graduate, in 2005! Yea me!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.woodtv.com/Global/story.asp?S=1465401">http://www.woodtv.com/Global/story.asp?S=1465401</a>
 
S

SaltyAndSweet

New member
Just curious about the difference between this study from PTC Therapeutics and the study started years ago by Copernicus Therapeutics. Does anyone understand the science of it and could explain it to me?

I actually participated in the Copernicus study many years ago, possibly in 2000. A couple of years after, a local news station did a news report on it. I'll post the link, but be warned, the media twisted and turned my words to make it sound more tragic. A few things were quoted that I would have never said... I know that CF does not cause leaky lungs. Do not know where the heck they got that one!

The study was done in Denver, but the only remaining article out there is from a sister station in Grand Rapids. Oh, and yes, I did graduate, in 2005! Yea me!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.woodtv.com/Global/story.asp?S=1465401">http://www.woodtv.com/Global/story.asp?S=1465401</a>
 
S

SaltyAndSweet

New member
Just curious about the difference between this study from PTC Therapeutics and the study started years ago by Copernicus Therapeutics. Does anyone understand the science of it and could explain it to me?

I actually participated in the Copernicus study many years ago, possibly in 2000. A couple of years after, a local news station did a news report on it. I'll post the link, but be warned, the media twisted and turned my words to make it sound more tragic. A few things were quoted that I would have never said... I know that CF does not cause leaky lungs. Do not know where the heck they got that one!

The study was done in Denver, but the only remaining article out there is from a sister station in Grand Rapids. Oh, and yes, I did graduate, in 2005! Yea me!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.woodtv.com/Global/story.asp?S=1465401">http://www.woodtv.com/Global/story.asp?S=1465401</a>
 
S

SaltyAndSweet

New member
Just curious about the difference between this study from PTC Therapeutics and the study started years ago by Copernicus Therapeutics. Does anyone understand the science of it and could explain it to me?

I actually participated in the Copernicus study many years ago, possibly in 2000. A couple of years after, a local news station did a news report on it. I'll post the link, but be warned, the media twisted and turned my words to make it sound more tragic. A few things were quoted that I would have never said... I know that CF does not cause leaky lungs. Do not know where the heck they got that one!

The study was done in Denver, but the only remaining article out there is from a sister station in Grand Rapids. Oh, and yes, I did graduate, in 2005! Yea me!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.woodtv.com/Global/story.asp?S=1465401">http://www.woodtv.com/Global/story.asp?S=1465401</a>
 
S

SaltyAndSweet

New member
Just curious about the difference between this study from PTC Therapeutics and the study started years ago by Copernicus Therapeutics. Does anyone understand the science of it and could explain it to me?

I actually participated in the Copernicus study many years ago, possibly in 2000. A couple of years after, a local news station did a news report on it. I'll post the link, but be warned, the media twisted and turned my words to make it sound more tragic. A few things were quoted that I would have never said... I know that CF does not cause leaky lungs. Do not know where the heck they got that one!

The study was done in Denver, but the only remaining article out there is from a sister station in Grand Rapids. Oh, and yes, I did graduate, in 2005! Yea me!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.woodtv.com/Global/story.asp?S=1465401">http://www.woodtv.com/Global/story.asp?S=1465401</a>
 
H

Havoc

New member
When I think of a cure, the idea that comes to mind is not having any symptoms while, at the same time, not doing any treatments. Gene therapy is expensive and so far, pretty ineffective. For most of us the closest thing we will get to a cure will be better maintenance treatments. That would be fine with me, but the longer it takes the less I'm going to have to maintain. Although, I can't complain too much because the care I have had has been excellent and my FEV1 has only recently dipped below 100% predicted. I'm hoping that I can get it back up there, but I'm having to do a lot more treatment that I ever have. I'm on Tobi now for the 1st time and I'm doing maintenance beta agonists.
 
H

Havoc

New member
When I think of a cure, the idea that comes to mind is not having any symptoms while, at the same time, not doing any treatments. Gene therapy is expensive and so far, pretty ineffective. For most of us the closest thing we will get to a cure will be better maintenance treatments. That would be fine with me, but the longer it takes the less I'm going to have to maintain. Although, I can't complain too much because the care I have had has been excellent and my FEV1 has only recently dipped below 100% predicted. I'm hoping that I can get it back up there, but I'm having to do a lot more treatment that I ever have. I'm on Tobi now for the 1st time and I'm doing maintenance beta agonists.
 
H

Havoc

New member
When I think of a cure, the idea that comes to mind is not having any symptoms while, at the same time, not doing any treatments. Gene therapy is expensive and so far, pretty ineffective. For most of us the closest thing we will get to a cure will be better maintenance treatments. That would be fine with me, but the longer it takes the less I'm going to have to maintain. Although, I can't complain too much because the care I have had has been excellent and my FEV1 has only recently dipped below 100% predicted. I'm hoping that I can get it back up there, but I'm having to do a lot more treatment that I ever have. I'm on Tobi now for the 1st time and I'm doing maintenance beta agonists.
 
H

Havoc

New member
When I think of a cure, the idea that comes to mind is not having any symptoms while, at the same time, not doing any treatments. Gene therapy is expensive and so far, pretty ineffective. For most of us the closest thing we will get to a cure will be better maintenance treatments. That would be fine with me, but the longer it takes the less I'm going to have to maintain. Although, I can't complain too much because the care I have had has been excellent and my FEV1 has only recently dipped below 100% predicted. I'm hoping that I can get it back up there, but I'm having to do a lot more treatment that I ever have. I'm on Tobi now for the 1st time and I'm doing maintenance beta agonists.
 
H

Havoc

New member
When I think of a cure, the idea that comes to mind is not having any symptoms while, at the same time, not doing any treatments. Gene therapy is expensive and so far, pretty ineffective. For most of us the closest thing we will get to a cure will be better maintenance treatments. That would be fine with me, but the longer it takes the less I'm going to have to maintain. Although, I can't complain too much because the care I have had has been excellent and my FEV1 has only recently dipped below 100% predicted. I'm hoping that I can get it back up there, but I'm having to do a lot more treatment that I ever have. I'm on Tobi now for the 1st time and I'm doing maintenance beta agonists.
 
M

minimedic304

New member
A CURE WOULD BE GREAT, BUT I DONT THINK THEIR WILL EVER BE ONE. BIG BUSINESS AND POLITICS WILL STOP ANY CURE FOR ANY DISEASE TO HAPPEN. SOUNDS LIKE I HAVE GIVEN UP ON A CURE, I HAVENT, ITS JUST HARD FOR ME TO BELIEVE THAT WITH EVERYTHING WE KNOW, THEIR ISNT BETTER TREATMENTS NOW. I STILL WILL CONTINUE TO RAISE MONEY FOR CF, BECAUSE IT GIVES ME HOPE. HOPE IS WAS KEEPS ME GOING

<a target=_blank class=ftalternatingbarlinklarge href="http://WWW.ORLANDOTROPHYBASS.COM">Text</a><a target=_blank class=ftalternatingbarlinklarge href="https://">Text</a>
 
M

minimedic304

New member
A CURE WOULD BE GREAT, BUT I DONT THINK THEIR WILL EVER BE ONE. BIG BUSINESS AND POLITICS WILL STOP ANY CURE FOR ANY DISEASE TO HAPPEN. SOUNDS LIKE I HAVE GIVEN UP ON A CURE, I HAVENT, ITS JUST HARD FOR ME TO BELIEVE THAT WITH EVERYTHING WE KNOW, THEIR ISNT BETTER TREATMENTS NOW. I STILL WILL CONTINUE TO RAISE MONEY FOR CF, BECAUSE IT GIVES ME HOPE. HOPE IS WAS KEEPS ME GOING

<a target=_blank class=ftalternatingbarlinklarge href="http://WWW.ORLANDOTROPHYBASS.COM">Text</a><a target=_blank class=ftalternatingbarlinklarge href="https://">Text</a>
 
M

minimedic304

New member
A CURE WOULD BE GREAT, BUT I DONT THINK THEIR WILL EVER BE ONE. BIG BUSINESS AND POLITICS WILL STOP ANY CURE FOR ANY DISEASE TO HAPPEN. SOUNDS LIKE I HAVE GIVEN UP ON A CURE, I HAVENT, ITS JUST HARD FOR ME TO BELIEVE THAT WITH EVERYTHING WE KNOW, THEIR ISNT BETTER TREATMENTS NOW. I STILL WILL CONTINUE TO RAISE MONEY FOR CF, BECAUSE IT GIVES ME HOPE. HOPE IS WAS KEEPS ME GOING

<a target=_blank class=ftalternatingbarlinklarge href="http://WWW.ORLANDOTROPHYBASS.COM">Text</a><a target=_blank class=ftalternatingbarlinklarge href="https://">Text</a>
 
M

minimedic304

New member
A CURE WOULD BE GREAT, BUT I DONT THINK THEIR WILL EVER BE ONE. BIG BUSINESS AND POLITICS WILL STOP ANY CURE FOR ANY DISEASE TO HAPPEN. SOUNDS LIKE I HAVE GIVEN UP ON A CURE, I HAVENT, ITS JUST HARD FOR ME TO BELIEVE THAT WITH EVERYTHING WE KNOW, THEIR ISNT BETTER TREATMENTS NOW. I STILL WILL CONTINUE TO RAISE MONEY FOR CF, BECAUSE IT GIVES ME HOPE. HOPE IS WAS KEEPS ME GOING

<a target=_blank class=ftalternatingbarlinklarge href="http://WWW.ORLANDOTROPHYBASS.COM">Text</a><a target=_blank class=ftalternatingbarlinklarge href="https://">Text</a>
 
M

minimedic304

New member
A CURE WOULD BE GREAT, BUT I DONT THINK THEIR WILL EVER BE ONE. BIG BUSINESS AND POLITICS WILL STOP ANY CURE FOR ANY DISEASE TO HAPPEN. SOUNDS LIKE I HAVE GIVEN UP ON A CURE, I HAVENT, ITS JUST HARD FOR ME TO BELIEVE THAT WITH EVERYTHING WE KNOW, THEIR ISNT BETTER TREATMENTS NOW. I STILL WILL CONTINUE TO RAISE MONEY FOR CF, BECAUSE IT GIVES ME HOPE. HOPE IS WAS KEEPS ME GOING

<a target=_blank class=ftalternatingbarlinklarge href="http://WWW.ORLANDOTROPHYBASS.COM">Text</a><a target=_blank class=ftalternatingbarlinklarge href="https://">Text</a>
 
G

GiGi77

New member
I was wondering if anyone has any info on this new <a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicalconnection.com">clinical trial</a>. I've looked on all my regular sites, but I've not found anything about this.

P&T
 
G

GiGi77

New member
I was wondering if anyone has any info on this new <a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicalconnection.com">clinical trial</a>. I've looked on all my regular sites, but I've not found anything about this.

P&T
 
G

GiGi77

New member
I was wondering if anyone has any info on this new <a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicalconnection.com">clinical trial</a>. I've looked on all my regular sites, but I've not found anything about this.

P&T
 
G

GiGi77

New member
I was wondering if anyone has any info on this new <a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicalconnection.com">clinical trial</a>. I've looked on all my regular sites, but I've not found anything about this.

P&T
 
G

GiGi77

New member
I was wondering if anyone has any info on this new <a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicalconnection.com">clinical trial</a>. I've looked on all my regular sites, but I've not found anything about this.
<br />
<br />P&T
 
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