Gene therapy

ttmomma

New member
It is a good possability that there is going to be a cure from it soon! I know there are alot of non-believers but I have faith that this is true! I was talking to my dd's cf doc- which is head of research dept and he said that they know the gene and found a way to get it to where it needs to go now- so all they have to do is get everything together. He said it is possible that it could take another 10 years but doubtful! He said they have already mad sick mice better from this and they know it works! Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!
 

ttmomma

New member
It is a good possability that there is going to be a cure from it soon! I know there are alot of non-believers but I have faith that this is true! I was talking to my dd's cf doc- which is head of research dept and he said that they know the gene and found a way to get it to where it needs to go now- so all they have to do is get everything together. He said it is possible that it could take another 10 years but doubtful! He said they have already mad sick mice better from this and they know it works! Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!
 

ttmomma

New member
It is a good possability that there is going to be a cure from it soon! I know there are alot of non-believers but I have faith that this is true! I was talking to my dd's cf doc- which is head of research dept and he said that they know the gene and found a way to get it to where it needs to go now- so all they have to do is get everything together. He said it is possible that it could take another 10 years but doubtful! He said they have already mad sick mice better from this and they know it works! Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!
 

Emily65Roses

New member
It'd be nice.

I just wanted to point this much out to you:
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it. So I've learned not to listen. I'll pay attention when it actually shows up.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.
 

Emily65Roses

New member
It'd be nice.

I just wanted to point this much out to you:
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it. So I've learned not to listen. I'll pay attention when it actually shows up.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.
 

Emily65Roses

New member
It'd be nice.

I just wanted to point this much out to you:
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it. So I've learned not to listen. I'll pay attention when it actually shows up.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.
 

NoExcuses

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

Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!</end quote></div>


I second everything Emily has said. Nothing wrong with hope.... but you should align your hope with reality.

The Phase II drug that your doc is refering to is only effective for 5-10% of CF patients who have a nonsense mutation.

But just because a drug is in Phase II or Phase III does not mean it will make it to market. Hundreds of drugs every year don't make it out of either phase due to unsafe side effects.
 

NoExcuses

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

Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!</end quote></div>


I second everything Emily has said. Nothing wrong with hope.... but you should align your hope with reality.

The Phase II drug that your doc is refering to is only effective for 5-10% of CF patients who have a nonsense mutation.

But just because a drug is in Phase II or Phase III does not mean it will make it to market. Hundreds of drugs every year don't make it out of either phase due to unsafe side effects.
 

NoExcuses

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

Then in looking at the drug pipeline they have it going into phase 2- maybe we have something here!!!!!!!!!!!!</end quote></div>


I second everything Emily has said. Nothing wrong with hope.... but you should align your hope with reality.

The Phase II drug that your doc is refering to is only effective for 5-10% of CF patients who have a nonsense mutation.

But just because a drug is in Phase II or Phase III does not mean it will make it to market. Hundreds of drugs every year don't make it out of either phase due to unsafe side effects.
 

NoExcuses

New member
One more thing - I would caution you against taking one physicians word on anything.

This is why the internet is so powerful and so important. Do research. Understand what is involved in drug develoment. Understand what the latest research is for CF.

Instead of doing the whole "I heard from so-and-so" deal, check it out for yourself. Be your own best resource for information.

Because at the end of the day - physicians can be wrong. You read it about it on this board all day long.
 

NoExcuses

New member
One more thing - I would caution you against taking one physicians word on anything.

This is why the internet is so powerful and so important. Do research. Understand what is involved in drug develoment. Understand what the latest research is for CF.

Instead of doing the whole "I heard from so-and-so" deal, check it out for yourself. Be your own best resource for information.

Because at the end of the day - physicians can be wrong. You read it about it on this board all day long.
 

NoExcuses

New member
One more thing - I would caution you against taking one physicians word on anything.

This is why the internet is so powerful and so important. Do research. Understand what is involved in drug develoment. Understand what the latest research is for CF.

Instead of doing the whole "I heard from so-and-so" deal, check it out for yourself. Be your own best resource for information.

Because at the end of the day - physicians can be wrong. You read it about it on this board all day long.
 

ttmomma

New member
Well, for one I didnt ask the opinion from anyone. He told it to me. Second, he is one of the heads of the research dept. so I think he probably knows a little about what he was talking about. Research the web, yeah, thats real great, NOT! You get so mis informed from the net, that is no where to go! I happen to believe what he says because I know he knows what he is talking about. He is in his 50's with spending his whole life devoted to CF, I dont think he would just throw out unconclusive information, just because. Anyways, I hope that some people on here will take this info as some very good news and keep it with them to stay strong and fight until a cure does come along. I have always liked to come here to get info and things but will not post again due to the negativity on here-
 

ttmomma

New member
Well, for one I didnt ask the opinion from anyone. He told it to me. Second, he is one of the heads of the research dept. so I think he probably knows a little about what he was talking about. Research the web, yeah, thats real great, NOT! You get so mis informed from the net, that is no where to go! I happen to believe what he says because I know he knows what he is talking about. He is in his 50's with spending his whole life devoted to CF, I dont think he would just throw out unconclusive information, just because. Anyways, I hope that some people on here will take this info as some very good news and keep it with them to stay strong and fight until a cure does come along. I have always liked to come here to get info and things but will not post again due to the negativity on here-
 

ttmomma

New member
Well, for one I didnt ask the opinion from anyone. He told it to me. Second, he is one of the heads of the research dept. so I think he probably knows a little about what he was talking about. Research the web, yeah, thats real great, NOT! You get so mis informed from the net, that is no where to go! I happen to believe what he says because I know he knows what he is talking about. He is in his 50's with spending his whole life devoted to CF, I dont think he would just throw out unconclusive information, just because. Anyways, I hope that some people on here will take this info as some very good news and keep it with them to stay strong and fight until a cure does come along. I have always liked to come here to get info and things but will not post again due to the negativity on here-
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.</end quote></div>

This is not negativity, it is 100% true. Also, there is plenty of useful stuff on the internet, you just have to know how to tell the good stuff from the bad.

I will also add that I haven't just "been hearing" that a cure is coming soon from Joe Shmoes on the street. I've heard it from doctors, scientists, and the CF community. I have many various newspaper clippings (often written by top researchers, heads of departments at very good clinics, etc) from more than a decade ago that state the same.
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.</end quote></div>

This is not negativity, it is 100% true. Also, there is plenty of useful stuff on the internet, you just have to know how to tell the good stuff from the bad.

I will also add that I haven't just "been hearing" that a cure is coming soon from Joe Shmoes on the street. I've heard it from doctors, scientists, and the CF community. I have many various newspaper clippings (often written by top researchers, heads of departments at very good clinics, etc) from more than a decade ago that state the same.
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
Those of us who are "non believers" aren't just being negative or what have you. I've been hearing that a cure is "right around the corner" since they found the CF gene in 1989. I was 5. I'm 23 now. That's 18 years I've been hearing it.

Oh and... healthy mice or not, the testing involved with that kind of drugs/therapy can easily take <i>more</i> than 10 years.</end quote></div>

This is not negativity, it is 100% true. Also, there is plenty of useful stuff on the internet, you just have to know how to tell the good stuff from the bad.

I will also add that I haven't just "been hearing" that a cure is coming soon from Joe Shmoes on the street. I've heard it from doctors, scientists, and the CF community. I have many various newspaper clippings (often written by top researchers, heads of departments at very good clinics, etc) from more than a decade ago that state the same.
 

NoExcuses

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

Well, for one I didnt ask the opinion from anyone. </end quote></div>


If you post on any site, you're going to get people who comment on your postings.
 

NoExcuses

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

Well, for one I didnt ask the opinion from anyone. </end quote></div>


If you post on any site, you're going to get people who comment on your postings.
 
Top