The generation that survives...

[Ender]

Reading some of the new advancements comming from the cff...it's pretty impressive. Chloroquine has been found to partially correct cf cells and reduce psedo (trials comming soon) which is kinda funny, cause cf makes people resistant to malaria, and chloroquine is used to treat malaria. I guess it lowers acidification of cf cells.

They have new enzymes in phase three trials. They are timed released, and provide sustained improvements in absorption. It will also be on par with the new FDA requirments for enzymes (why are there none now!) Theraclec is also on the way, and it more stable then the ones derived from porcine origins

Compacted DNA in nanospheres are being studied to introduce the genes into cells, while bypassing the immune response. Those trials look promising.

And then there is vertex, with their promising new drug canditates. Denufasol, GSNO, simvastin...all being researched on there abilities to regulate the cf monster.

So i was thinking...if you are relatively healthy now...do you think you will see the time when cf is manageable....and we will basically be able to control it? I for one, am by most part an optimist, and I am glad i have cf during these times. Everything just looks so promising.

What do you think?

Kiel

 

[Ender]

Reading some of the new advancements comming from the cff...it's pretty impressive. Chloroquine has been found to partially correct cf cells and reduce psedo (trials comming soon) which is kinda funny, cause cf makes people resistant to malaria, and chloroquine is used to treat malaria. I guess it lowers acidification of cf cells.

They have new enzymes in phase three trials. They are timed released, and provide sustained improvements in absorption. It will also be on par with the new FDA requirments for enzymes (why are there none now!) Theraclec is also on the way, and it more stable then the ones derived from porcine origins

Compacted DNA in nanospheres are being studied to introduce the genes into cells, while bypassing the immune response. Those trials look promising.

And then there is vertex, with their promising new drug canditates. Denufasol, GSNO, simvastin...all being researched on there abilities to regulate the cf monster.

So i was thinking...if you are relatively healthy now...do you think you will see the time when cf is manageable....and we will basically be able to control it? I for one, am by most part an optimist, and I am glad i have cf during these times. Everything just looks so promising.

What do you think?

Kiel

 

[Ender]

Reading some of the new advancements comming from the cff...it's pretty impressive. Chloroquine has been found to partially correct cf cells and reduce psedo (trials comming soon) which is kinda funny, cause cf makes people resistant to malaria, and chloroquine is used to treat malaria. I guess it lowers acidification of cf cells.

They have new enzymes in phase three trials. They are timed released, and provide sustained improvements in absorption. It will also be on par with the new FDA requirments for enzymes (why are there none now!) Theraclec is also on the way, and it more stable then the ones derived from porcine origins

Compacted DNA in nanospheres are being studied to introduce the genes into cells, while bypassing the immune response. Those trials look promising.

And then there is vertex, with their promising new drug canditates. Denufasol, GSNO, simvastin...all being researched on there abilities to regulate the cf monster.

So i was thinking...if you are relatively healthy now...do you think you will see the time when cf is manageable....and we will basically be able to control it? I for one, am by most part an optimist, and I am glad i have cf during these times. Everything just looks so promising.

What do you think?

Kiel

 

[LisaV]

There will be a generation like that. (As there has been for other diseases - Marfan comes to mind to me of course immediately)
And the generation won't even know it until it is retired and bouncing their grandchildren on their knees.
Will it be this generation?
Could be. Why not. As you point out there is lots of stuff in the pipeline.
Certainly there is good cause to do every positive treatment that comes up to the best of one's ability.
It would be quite something in old age to look back on one's life and realize that you have successfully "walked point" for so many.

 

[LisaV]

There will be a generation like that. (As there has been for other diseases - Marfan comes to mind to me of course immediately)
And the generation won't even know it until it is retired and bouncing their grandchildren on their knees.
Will it be this generation?
Could be. Why not. As you point out there is lots of stuff in the pipeline.
Certainly there is good cause to do every positive treatment that comes up to the best of one's ability.
It would be quite something in old age to look back on one's life and realize that you have successfully "walked point" for so many.

 

[LisaV]

There will be a generation like that. (As there has been for other diseases - Marfan comes to mind to me of course immediately)
And the generation won't even know it until it is retired and bouncing their grandchildren on their knees.
Will it be this generation?
Could be. Why not. As you point out there is lots of stuff in the pipeline.
Certainly there is good cause to do every positive treatment that comes up to the best of one's ability.
It would be quite something in old age to look back on one's life and realize that you have successfully "walked point" for so many.

 

[Scarlett81]

I don't set my mind on a cure, meaning I don't make my decisions on the basis that a cure will happen for me. BUT, I do believe that in my lifetime there will be so much progress with treatment that will make me live longer, perhaps 60, 70 +. I very much believe in that. I still think that the 'cure' will be one that will have to be managed, I'll still have to do treatments, ect.
I think we are still lightyears away from a cure that eradicates therapy, treatments and needing meds.
I don't really think much about a cure or a life prolonging treatment though, except when threads like this come up.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am content, I work hard to be healthy and maintain my health pretty well. I feel very much for others that have it worse than me, and of course I worry too from time to time about my fate. A cure would definately be welcome if someone out there has it!

 

[Scarlett81]

I don't set my mind on a cure, meaning I don't make my decisions on the basis that a cure will happen for me. BUT, I do believe that in my lifetime there will be so much progress with treatment that will make me live longer, perhaps 60, 70 +. I very much believe in that. I still think that the 'cure' will be one that will have to be managed, I'll still have to do treatments, ect.
I think we are still lightyears away from a cure that eradicates therapy, treatments and needing meds.
I don't really think much about a cure or a life prolonging treatment though, except when threads like this come up.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am content, I work hard to be healthy and maintain my health pretty well. I feel very much for others that have it worse than me, and of course I worry too from time to time about my fate. A cure would definately be welcome if someone out there has it!

 

[Scarlett81]

I don't set my mind on a cure, meaning I don't make my decisions on the basis that a cure will happen for me. BUT, I do believe that in my lifetime there will be so much progress with treatment that will make me live longer, perhaps 60, 70 +. I very much believe in that. I still think that the 'cure' will be one that will have to be managed, I'll still have to do treatments, ect.
I think we are still lightyears away from a cure that eradicates therapy, treatments and needing meds.
I don't really think much about a cure or a life prolonging treatment though, except when threads like this come up.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am content, I work hard to be healthy and maintain my health pretty well. I feel very much for others that have it worse than me, and of course I worry too from time to time about my fate. A cure would definately be welcome if someone out there has it!

 

[thelizardqueen]

I don't see myself being around for a cure, but I'm hopeful that with technology today, I just may, just maybe be around for when they can control CF. I'm very hopeful that I'll still be kicking around in my 40s and 50s. Maybe even 60s - who knows. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

I don't see myself being around for a cure, but I'm hopeful that with technology today, I just may, just maybe be around for when they can control CF. I'm very hopeful that I'll still be kicking around in my 40s and 50s. Maybe even 60s - who knows. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

I don't see myself being around for a cure, but I'm hopeful that with technology today, I just may, just maybe be around for when they can control CF. I'm very hopeful that I'll still be kicking around in my 40s and 50s. Maybe even 60s - who knows. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LisaV]

Gee. i didn't read Kiel's post as a thought that there would be a cure (cause I sure don't think there's going to be a cure any time soon - if at all). I read it that there might be enough new treatments in the pipeline that for some that are alive now the treatments would keep them living long enough that they would live to ripe old ages (or at least riper old ages than they do now).

That I think might be possible.

But the first few who do that are going to be tired tired tired. They will have been the first ones to try a whole bunch of new things. And they might well be doing treatments 4-5 hours a day at the end there. But that's how it begins. And over time, the newer regimes become more standardized and less experimental etc etc.

And the first few who make it to an older age with the new treatments will be those who do NOT have transplant. Yet a whole other discussion...

 

[LisaV]

Gee. i didn't read Kiel's post as a thought that there would be a cure (cause I sure don't think there's going to be a cure any time soon - if at all). I read it that there might be enough new treatments in the pipeline that for some that are alive now the treatments would keep them living long enough that they would live to ripe old ages (or at least riper old ages than they do now).

That I think might be possible.

But the first few who do that are going to be tired tired tired. They will have been the first ones to try a whole bunch of new things. And they might well be doing treatments 4-5 hours a day at the end there. But that's how it begins. And over time, the newer regimes become more standardized and less experimental etc etc.

And the first few who make it to an older age with the new treatments will be those who do NOT have transplant. Yet a whole other discussion...

 

[LisaV]

Gee. i didn't read Kiel's post as a thought that there would be a cure (cause I sure don't think there's going to be a cure any time soon - if at all). I read it that there might be enough new treatments in the pipeline that for some that are alive now the treatments would keep them living long enough that they would live to ripe old ages (or at least riper old ages than they do now).

That I think might be possible.

But the first few who do that are going to be tired tired tired. They will have been the first ones to try a whole bunch of new things. And they might well be doing treatments 4-5 hours a day at the end there. But that's how it begins. And over time, the newer regimes become more standardized and less experimental etc etc.

And the first few who make it to an older age with the new treatments will be those who do NOT have transplant. Yet a whole other discussion...

 

[Rokiss12]

i dont think that i will be around for a cure. maybe a prolonged life into, bringing me into my 50's....but when i go to walks, participate in fundraisers, etc., my mind just thinks of how im helping the next generations, not mine. i dont think a cure is coming any time soon personally. i've accept that, and when people ask me what i think about a cure coming soon, i just say i dont think there will be one and move on. its just what i've come to terms with.

not saying if someones hiding the fountain of youth syrup somewhere i'd be totaly object taking some of that lol

 

[Rokiss12]

i dont think that i will be around for a cure. maybe a prolonged life into, bringing me into my 50's....but when i go to walks, participate in fundraisers, etc., my mind just thinks of how im helping the next generations, not mine. i dont think a cure is coming any time soon personally. i've accept that, and when people ask me what i think about a cure coming soon, i just say i dont think there will be one and move on. its just what i've come to terms with.

not saying if someones hiding the fountain of youth syrup somewhere i'd be totaly object taking some of that lol

 

[Rokiss12]

i dont think that i will be around for a cure. maybe a prolonged life into, bringing me into my 50's....but when i go to walks, participate in fundraisers, etc., my mind just thinks of how im helping the next generations, not mine. i dont think a cure is coming any time soon personally. i've accept that, and when people ask me what i think about a cure coming soon, i just say i dont think there will be one and move on. its just what i've come to terms with.

not saying if someones hiding the fountain of youth syrup somewhere i'd be totaly object taking some of that lol

 

[ktsmom]

Kiel, your optimism is catching. When I get really low, I snap myself out of it by thinking about the research and treatment advancements on the horizon. The words "fortunate" actually come out of my mouth. Fortunate that my daughter is still so young, fortunate that she has a fabulous doc who I feel is on the cutting edge of treatments, fortunate that she is Double Delta F508 because research might be focused on that gene more than others. Two hours later I'll be crying again, so whatever.

As a mom of the newest generation of cf'ers, I am grateful for all of those who have gone before and helped along the treatments that we are now using on our daughter. Reading your stories has given me tremendous admiration for you all.

Our duty will be to help pioneer the treatments in the pipeline for the next generation. If my daughter can remain strong for that, I'm right there with her.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

Kiel, your optimism is catching. When I get really low, I snap myself out of it by thinking about the research and treatment advancements on the horizon. The words "fortunate" actually come out of my mouth. Fortunate that my daughter is still so young, fortunate that she has a fabulous doc who I feel is on the cutting edge of treatments, fortunate that she is Double Delta F508 because research might be focused on that gene more than others. Two hours later I'll be crying again, so whatever.

As a mom of the newest generation of cf'ers, I am grateful for all of those who have gone before and helped along the treatments that we are now using on our daughter. Reading your stories has given me tremendous admiration for you all.

Our duty will be to help pioneer the treatments in the pipeline for the next generation. If my daughter can remain strong for that, I'm right there with her.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)