You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Gene therapy
- Thread starter ttmomma
- Start date
I for one can understand the excitement of the possibility, but also I can understand the wait and see aspect as well. I tell everyone that I run across that when my little girl is 10 or maybe 15 that CF will be a like diabetes. I don't think I'm wrong for saying that. Now, I'm not a Doctor by any means, but I do work with Doctors and labs. each day that work with CF. And sure I don't think that it is out of the realm of thinking to think that CF will take a huge turn in advancement in the next few years. My daughter is 3, she was dx at 1.5, and during that time look what has been pushed through and what has been developed. Everyones hope hinges on the gene therepy, because that seems the "most likely" cure. Those of you that have been hearing the cure is coming the cure is coming sure may feel like it is a broken record, and sure you may get tired of newcomers or people who post here not as often saying I heard this or I heard that. Who is to say that they may not be right! For those internet sites to be posted doesn't a doctor like the poster is referring to have to pass that information along. They don't let some Joe Blow writer just make it up. Let's remember we all are here for the same purpose and that is to make sure all who are affected by CF (CFer, parent, wife, husband, son, daughter, best friend) can talk to each other and not lose hope. I don't know what it is like to have CF, but I do remember to this day the feeling I had when I was holding my little girl when the Doctor told me she had CF. It was something I "thought" at the time I couldn't take away from her or make it better, but the more I got involved with the Doctors and labs I work with, the more I realized that it is not unlikely that a cure won't be found by the time she 15-20 yrs. if not a cure, then a longterm treatment that will help her live a normal life to 65,75,85 or even 95 years of age. CF is not what it was 5, 10, 15, 20 years ago, sure it is the same disease. But as time change and medicine advances so does the hope of CF. Look at the pipeline I ask you, and compare it to 1989 or even 1999, and tell me that we should not hope. Sorry for the spelling!
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
I for one can understand the excitement of the possibility, but also I can understand the wait and see aspect as well. I tell everyone that I run across that when my little girl is 10 or maybe 15 that CF will be a like diabetes. I don't think I'm wrong for saying that. Now, I'm not a Doctor by any means, but I do work with Doctors and labs. each day that work with CF. And sure I don't think that it is out of the realm of thinking to think that CF will take a huge turn in advancement in the next few years. My daughter is 3, she was dx at 1.5, and during that time look what has been pushed through and what has been developed. Everyones hope hinges on the gene therepy, because that seems the "most likely" cure. Those of you that have been hearing the cure is coming the cure is coming sure may feel like it is a broken record, and sure you may get tired of newcomers or people who post here not as often saying I heard this or I heard that. Who is to say that they may not be right! For those internet sites to be posted doesn't a doctor like the poster is referring to have to pass that information along. They don't let some Joe Blow writer just make it up. Let's remember we all are here for the same purpose and that is to make sure all who are affected by CF (CFer, parent, wife, husband, son, daughter, best friend) can talk to each other and not lose hope. I don't know what it is like to have CF, but I do remember to this day the feeling I had when I was holding my little girl when the Doctor told me she had CF. It was something I "thought" at the time I couldn't take away from her or make it better, but the more I got involved with the Doctors and labs I work with, the more I realized that it is not unlikely that a cure won't be found by the time she 15-20 yrs. if not a cure, then a longterm treatment that will help her live a normal life to 65,75,85 or even 95 years of age. CF is not what it was 5, 10, 15, 20 years ago, sure it is the same disease. But as time change and medicine advances so does the hope of CF. Look at the pipeline I ask you, and compare it to 1989 or even 1999, and tell me that we should not hope. Sorry for the spelling!
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
I for one can understand the excitement of the possibility, but also I can understand the wait and see aspect as well. I tell everyone that I run across that when my little girl is 10 or maybe 15 that CF will be a like diabetes. I don't think I'm wrong for saying that. Now, I'm not a Doctor by any means, but I do work with Doctors and labs. each day that work with CF. And sure I don't think that it is out of the realm of thinking to think that CF will take a huge turn in advancement in the next few years. My daughter is 3, she was dx at 1.5, and during that time look what has been pushed through and what has been developed. Everyones hope hinges on the gene therepy, because that seems the "most likely" cure. Those of you that have been hearing the cure is coming the cure is coming sure may feel like it is a broken record, and sure you may get tired of newcomers or people who post here not as often saying I heard this or I heard that. Who is to say that they may not be right! For those internet sites to be posted doesn't a doctor like the poster is referring to have to pass that information along. They don't let some Joe Blow writer just make it up. Let's remember we all are here for the same purpose and that is to make sure all who are affected by CF (CFer, parent, wife, husband, son, daughter, best friend) can talk to each other and not lose hope. I don't know what it is like to have CF, but I do remember to this day the feeling I had when I was holding my little girl when the Doctor told me she had CF. It was something I "thought" at the time I couldn't take away from her or make it better, but the more I got involved with the Doctors and labs I work with, the more I realized that it is not unlikely that a cure won't be found by the time she 15-20 yrs. if not a cure, then a longterm treatment that will help her live a normal life to 65,75,85 or even 95 years of age. CF is not what it was 5, 10, 15, 20 years ago, sure it is the same disease. But as time change and medicine advances so does the hope of CF. Look at the pipeline I ask you, and compare it to 1989 or even 1999, and tell me that we should not hope. Sorry for the spelling!
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
Chuck father to Avery 3 years of age with Cystic Fibrosis DF508/DF508, and Rhett 2 years of age carrier--Knoxville, TN
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>
<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.</end quote></div>
<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.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>
<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.</end quote></div>
<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.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sakasuka</b></i>
<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.</end quote></div>
<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.</end quote></div>
I think that this is just a difference of opinion. People who don't have the disease will never understand what it is like to have it, as those who have it most likely will never understand what it is like to raise a child with it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
I think that this is just a difference of opinion. People who don't have the disease will never understand what it is like to have it, as those who have it most likely will never understand what it is like to raise a child with it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
I think that this is just a difference of opinion. People who don't have the disease will never understand what it is like to have it, as those who have it most likely will never understand what it is like to raise a child with it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
In general, parents have more hope than those who have CF because they need it. I think that for CFers themselves, it is much harder to get our hopes up once again becuase it has happened for so long, always finding out that a cure is around the corner. For me, I will believe it when I see it.
I hate to sound negative but I have to agree with others here. When my son was diagnosed 29 years ago, that's exactly what we heard "within 10 years there will be a cure or control"
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
I hate to sound negative but I have to agree with others here. When my son was diagnosed 29 years ago, that's exactly what we heard "within 10 years there will be a cure or control"
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
I hate to sound negative but I have to agree with others here. When my son was diagnosed 29 years ago, that's exactly what we heard "within 10 years there will be a cure or control"
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
We also were told back in 1978 not to expect our son to live any longer than 16 or 17 but with excellent health care and newer medications etc. he proved them wrong.
Unfortunately those 10 years never came in time for my son and he was 27 when he passed.
Although I am a little pessamistic when it comes to a cure I certainly do think that with the advancements being made each day and better medications, young children now will have a much better chance at living a normal life span.
Sandy
Mockingbird
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ttmomma</b></i>
Well they found the gene, they found out how to put the gene in- sounds pretty good to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!</end quote></div>
Someone correct me if I'm wrong, but I think they've known how to do that for quite a while.
I did a quick search and found an article: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genome.gov/10001213">http://www.genome.gov/10001213</a>
"Gene therapy offers great promise for life-saving treatment for CF patients since it targets the cause of CF rather than just treating symptoms. Gene therapy for CF had its start in 1990, when scientists successfully corrected faulty CFTR genes by adding normal copies of the gene to laboratory cell cultures.
In 1993, the first experimental gene therapy treatment was given to a patient with CF. Researchers modified a common cold virus to act as a delivery vehicle - or "vector"- carrying the normal genes to the CFTR cells in the airways of the lung.
Subsequent studies have tested other methods of gene delivery, such as fat capsules, synthetic vectors, nose drops or drizzling cells down a flexible tube to CFTR cells lining the airways of lungs. Researchers are now testing aerosol delivery using nebulizers.
But finding the best delivery system for transporting normal CFTR genes is only one problem that scientists must solve to develop an effective treatment for CF. Scientists must also determine the life span of affected lung cells, identify the "parent cells" that produce CFTR cells, find out how long treatment should last and how often it needs to be repeated.
The first cystic fibrosis gene therapy experiments have involved lung cells because these cells are readily accessible and because lung damage is the most common, life-threatening problem in CF patients. But scientists hope that the technologies being developed for lung cells will be adapted to treat other organs affected by CF."
-----------------------------------------------------------------------------
I imagine this is what your doctor was talking about, but it is impossible to tell.
At any rate, I believe in the proverb "Do not boast about tomorrow, for you do not know what a day may bring forth." Or in other words, there can (and probably will) be many unforeseen obstacles and complications in the future, things which not even a doctor who is head of a research department can predict or control.
It is fine to hope for a cure, but it is wise to be prepared for a future without one.
"It is better to take refuge in the Lord
Than to trust in man.
It is better to take refuge in the Lord
Than to trust in princes [or doctors, if you prefer]" Psalm 118:8
Well they found the gene, they found out how to put the gene in- sounds pretty good to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!</end quote></div>
Someone correct me if I'm wrong, but I think they've known how to do that for quite a while.
I did a quick search and found an article: <a target=_blank class=ftalternatingbarlinklarge href="http://www.genome.gov/10001213">http://www.genome.gov/10001213</a>
"Gene therapy offers great promise for life-saving treatment for CF patients since it targets the cause of CF rather than just treating symptoms. Gene therapy for CF had its start in 1990, when scientists successfully corrected faulty CFTR genes by adding normal copies of the gene to laboratory cell cultures.
In 1993, the first experimental gene therapy treatment was given to a patient with CF. Researchers modified a common cold virus to act as a delivery vehicle - or "vector"- carrying the normal genes to the CFTR cells in the airways of the lung.
Subsequent studies have tested other methods of gene delivery, such as fat capsules, synthetic vectors, nose drops or drizzling cells down a flexible tube to CFTR cells lining the airways of lungs. Researchers are now testing aerosol delivery using nebulizers.
But finding the best delivery system for transporting normal CFTR genes is only one problem that scientists must solve to develop an effective treatment for CF. Scientists must also determine the life span of affected lung cells, identify the "parent cells" that produce CFTR cells, find out how long treatment should last and how often it needs to be repeated.
The first cystic fibrosis gene therapy experiments have involved lung cells because these cells are readily accessible and because lung damage is the most common, life-threatening problem in CF patients. But scientists hope that the technologies being developed for lung cells will be adapted to treat other organs affected by CF."
-----------------------------------------------------------------------------
I imagine this is what your doctor was talking about, but it is impossible to tell.
At any rate, I believe in the proverb "Do not boast about tomorrow, for you do not know what a day may bring forth." Or in other words, there can (and probably will) be many unforeseen obstacles and complications in the future, things which not even a doctor who is head of a research department can predict or control.
It is fine to hope for a cure, but it is wise to be prepared for a future without one.
"It is better to take refuge in the Lord
Than to trust in man.
It is better to take refuge in the Lord
Than to trust in princes [or doctors, if you prefer]" Psalm 118:8