PTC 124

janddburke · Jun 21, 2009

I am also the parent of a CFer and I couldn't have said it better myself.

also let's not forget the importance of participation in climical trials. without the information of drugs in Phase I or II or III we wouldn't be able to get the necessary participation.

the advertisement of the drugs in the pipeline also helps the drug companies with their funding. Without additonal funding more and new discoveries would not be possible.

all with a grain of salt. (pun)

janddburke · Jun 21, 2009

I am also the parent of a CFer and I couldn't have said it better myself.

also let's not forget the importance of participation in climical trials. without the information of drugs in Phase I or II or III we wouldn't be able to get the necessary participation.

the advertisement of the drugs in the pipeline also helps the drug companies with their funding. Without additonal funding more and new discoveries would not be possible.

all with a grain of salt. (pun)

janddburke · Jun 21, 2009

I am also the parent of a CFer and I couldn't have said it better myself.

also let's not forget the importance of participation in climical trials. without the information of drugs in Phase I or II or III we wouldn't be able to get the necessary participation.

the advertisement of the drugs in the pipeline also helps the drug companies with their funding. Without additonal funding more and new discoveries would not be possible.

all with a grain of salt. (pun)

janddburke · Jun 21, 2009

I am also the parent of a CFer and I couldn't have said it better myself.

also let's not forget the importance of participation in climical trials. without the information of drugs in Phase I or II or III we wouldn't be able to get the necessary participation.

the advertisement of the drugs in the pipeline also helps the drug companies with their funding. Without additonal funding more and new discoveries would not be possible.

all with a grain of salt. (pun)

janddburke · Jun 21, 2009

I am also the parent of a CFer and I couldn't have said it better myself.
 
 also let's not forget the importance of participation in climical trials. without the information of drugs in Phase I or II or III we wouldn't be able to get the necessary participation.
 
 the advertisement of the drugs in the pipeline also helps the drug companies with their funding. Without additonal funding more and new discoveries would not be possible.
 
 all with a grain of salt. (pun)

kayleesgrandma · Jun 21, 2009

One of the first things I learned from all of you, when I first came to the site, was the sense of hope, AND of pessimism...Hope for everything that is possible, but don't "hold your breath" when waiting for "miracle" results...

By all the great comments here, I think all aspects of this problem are covered--how does a new drug/trial program get attention--and what is to be made of the belief that it truly may be the answer to some specific problem dealing with cf?

I've learned to listen to the wisdon of you cfrs that have dealt with this disease for so long...you are a "fount of knowledge" that the newbies (and us caregiver)need to keep themselves as healthy as they can...

Thanks to all of you, I've learned to have a "wait and see" attitude--but I sure keep a reserve of hope in my back pocket!

kayleesgrandma · Jun 21, 2009

One of the first things I learned from all of you, when I first came to the site, was the sense of hope, AND of pessimism...Hope for everything that is possible, but don't "hold your breath" when waiting for "miracle" results...

By all the great comments here, I think all aspects of this problem are covered--how does a new drug/trial program get attention--and what is to be made of the belief that it truly may be the answer to some specific problem dealing with cf?

I've learned to listen to the wisdon of you cfrs that have dealt with this disease for so long...you are a "fount of knowledge" that the newbies (and us caregiver)need to keep themselves as healthy as they can...

Thanks to all of you, I've learned to have a "wait and see" attitude--but I sure keep a reserve of hope in my back pocket!

kayleesgrandma · Jun 21, 2009

One of the first things I learned from all of you, when I first came to the site, was the sense of hope, AND of pessimism...Hope for everything that is possible, but don't "hold your breath" when waiting for "miracle" results...

By all the great comments here, I think all aspects of this problem are covered--how does a new drug/trial program get attention--and what is to be made of the belief that it truly may be the answer to some specific problem dealing with cf?

I've learned to listen to the wisdon of you cfrs that have dealt with this disease for so long...you are a "fount of knowledge" that the newbies (and us caregiver)need to keep themselves as healthy as they can...

Thanks to all of you, I've learned to have a "wait and see" attitude--but I sure keep a reserve of hope in my back pocket!

kayleesgrandma · Jun 21, 2009

One of the first things I learned from all of you, when I first came to the site, was the sense of hope, AND of pessimism...Hope for everything that is possible, but don't "hold your breath" when waiting for "miracle" results...

By all the great comments here, I think all aspects of this problem are covered--how does a new drug/trial program get attention--and what is to be made of the belief that it truly may be the answer to some specific problem dealing with cf?

I've learned to listen to the wisdon of you cfrs that have dealt with this disease for so long...you are a "fount of knowledge" that the newbies (and us caregiver)need to keep themselves as healthy as they can...

Thanks to all of you, I've learned to have a "wait and see" attitude--but I sure keep a reserve of hope in my back pocket!

kayleesgrandma · Jun 21, 2009

One of the first things I learned from all of you, when I first came to the site, was the sense of hope, AND of pessimism...Hope for everything that is possible, but don't "hold your breath" when waiting for "miracle" results...
 
 By all the great comments here, I think all aspects of this problem are covered--how does a new drug/trial program get attention--and what is to be made of the belief that it truly may be the answer to some specific problem dealing with cf?
 
 I've learned to listen to the wisdon of you cfrs that have dealt with this disease for so long...you are a "fount of knowledge" that the newbies (and us caregiver)need to keep themselves as healthy as they can...
 
 Thanks to all of you, I've learned to have a "wait and see" attitude--but I sure keep a reserve of hope in my back pocket!

JazzysMom · Jun 21, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
As for the Newbies not wanting to hear from us, </end quote></div>

I just want to speak up that not ALL newbies are resistant. Those that are just want to hold onto that hope just for a bit longer then reality will let them. We all know that it will rear its end sooner then later.

To guide these folks before its too late is one thing, to slap them senseless with reality when contrary to some beliefs the reality never totally disappears is another.

I also wish I had some older CFers to get some feedback on growing up....or at least more then I did. I had a doctor in the CF clinic who had CF (before cross contamination issues obviously) & his world just didnt co exist with mine. Although we had CF in common....his world was much more condusive to his health care.

Nothing like getting off track of the topic BTW LOL~

I have no idea when any of these items in the pipeline will come to the forefront, but its a heck of a lot closer then when I was a kid.

I dont sit & hold my breath waiting as many of us older CFers have said that after awhile, you get tired. I do wish it all become available for our younger generation of CFers!!!

JazzysMom · Jun 21, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
As for the Newbies not wanting to hear from us, </end quote></div>

I just want to speak up that not ALL newbies are resistant. Those that are just want to hold onto that hope just for a bit longer then reality will let them. We all know that it will rear its end sooner then later.

To guide these folks before its too late is one thing, to slap them senseless with reality when contrary to some beliefs the reality never totally disappears is another.

I also wish I had some older CFers to get some feedback on growing up....or at least more then I did. I had a doctor in the CF clinic who had CF (before cross contamination issues obviously) & his world just didnt co exist with mine. Although we had CF in common....his world was much more condusive to his health care.

Nothing like getting off track of the topic BTW LOL~

I have no idea when any of these items in the pipeline will come to the forefront, but its a heck of a lot closer then when I was a kid.

I dont sit & hold my breath waiting as many of us older CFers have said that after awhile, you get tired. I do wish it all become available for our younger generation of CFers!!!

JazzysMom · Jun 21, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
As for the Newbies not wanting to hear from us, </end quote></div>

I just want to speak up that not ALL newbies are resistant. Those that are just want to hold onto that hope just for a bit longer then reality will let them. We all know that it will rear its end sooner then later.

To guide these folks before its too late is one thing, to slap them senseless with reality when contrary to some beliefs the reality never totally disappears is another.

I also wish I had some older CFers to get some feedback on growing up....or at least more then I did. I had a doctor in the CF clinic who had CF (before cross contamination issues obviously) & his world just didnt co exist with mine. Although we had CF in common....his world was much more condusive to his health care.

Nothing like getting off track of the topic BTW LOL~

I have no idea when any of these items in the pipeline will come to the forefront, but its a heck of a lot closer then when I was a kid.

I dont sit & hold my breath waiting as many of us older CFers have said that after awhile, you get tired. I do wish it all become available for our younger generation of CFers!!!

JazzysMom · Jun 21, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
As for the Newbies not wanting to hear from us, </end quote>

I just want to speak up that not ALL newbies are resistant. Those that are just want to hold onto that hope just for a bit longer then reality will let them. We all know that it will rear its end sooner then later.

To guide these folks before its too late is one thing, to slap them senseless with reality when contrary to some beliefs the reality never totally disappears is another.

I also wish I had some older CFers to get some feedback on growing up....or at least more then I did. I had a doctor in the CF clinic who had CF (before cross contamination issues obviously) & his world just didnt co exist with mine. Although we had CF in common....his world was much more condusive to his health care.

Nothing like getting off track of the topic BTW LOL~

I have no idea when any of these items in the pipeline will come to the forefront, but its a heck of a lot closer then when I was a kid.

I dont sit & hold my breath waiting as many of us older CFers have said that after awhile, you get tired. I do wish it all become available for our younger generation of CFers!!!

JazzysMom · Jun 21, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
 As for the Newbies not wanting to hear from us, </end quote>
 
 
 I just want to speak up that not ALL newbies are resistant. Those that are just want to hold onto that hope just for a bit longer then reality will let them. We all know that it will rear its end sooner then later.
 
 To guide these folks before its too late is one thing, to slap them senseless with reality when contrary to some beliefs the reality never totally disappears is another.
 
 I also wish I had some older CFers to get some feedback on growing up....or at least more then I did. I had a doctor in the CF clinic who had CF (before cross contamination issues obviously) & his world just didnt co exist with mine. Although we had CF in common....his world was much more condusive to his health care.
 
 Nothing like getting off track of the topic BTW LOL~
 
 I have no idea when any of these items in the pipeline will come to the forefront, but its a heck of a lot closer then when I was a kid.
 
 I dont sit & hold my breath waiting as many of us older CFers have said that after awhile, you get tired. I do wish it all become available for our younger generation of CFers!!!

Jeana · Jun 21, 2009

Harriet and Debbie... Well, a lot of you make some great points. I just want to add that even though I don't ever think about the drugs coming down the pipeline as a "cure," I have a lot of faith that these drugs will extend my life as a CFer. That's why I keep joining drug studies. I feel like if I am at the cutting edge of new treatments, then I'm going to blow that median life expectancy out of the water. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Jun 21, 2009

Harriet and Debbie... Well, a lot of you make some great points. I just want to add that even though I don't ever think about the drugs coming down the pipeline as a "cure," I have a lot of faith that these drugs will extend my life as a CFer. That's why I keep joining drug studies. I feel like if I am at the cutting edge of new treatments, then I'm going to blow that median life expectancy out of the water. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Jun 21, 2009

Harriet and Debbie... Well, a lot of you make some great points. I just want to add that even though I don't ever think about the drugs coming down the pipeline as a "cure," I have a lot of faith that these drugs will extend my life as a CFer. That's why I keep joining drug studies. I feel like if I am at the cutting edge of new treatments, then I'm going to blow that median life expectancy out of the water. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Jun 21, 2009

Harriet and Debbie... Well, a lot of you make some great points. I just want to add that even though I don't ever think about the drugs coming down the pipeline as a "cure," I have a lot of faith that these drugs will extend my life as a CFer. That's why I keep joining drug studies. I feel like if I am at the cutting edge of new treatments, then I'm going to blow that median life expectancy out of the water. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jeana · Jun 21, 2009

Harriet and Debbie... Well, a lot of you make some great points. I just want to add that even though I don't ever think about the drugs coming down the pipeline as a "cure," I have a lot of faith that these drugs will extend my life as a CFer. That's why I keep joining drug studies. I feel like if I am at the cutting edge of new treatments, then I'm going to blow that median life expectancy out of the water. <img src="i/expressions/face-icon-small-smile.gif" border="0">

PTC 124

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