PTC 124

Diane · Jun 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009

just keep in mind many drugs don't get through each of the phases.

so don't be surprised if one day a drug falls out of phase II or phase III..... it's just the nature of drug discovery</end quote></div>

This is why i dislike when they hype about a new drug that seems to have so much potential and get us all excited thinking FINALLY something is coming out that will actually make a big difference and then....Kaboom, you never hear a word about it again.<img src="i/expressions/face-icon-small-sad.gif" border="0">

Not saying this is what is happening with PTC124, but in honesty i'd rather hear about a true potential helpful drug when it is already passed all the phases and ready to be out on the market. That way you dont get your hopes up only to be crushed once again, by a "false alarm".

Diane · Jun 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009

just keep in mind many drugs don't get through each of the phases.

so don't be surprised if one day a drug falls out of phase II or phase III..... it's just the nature of drug discovery</end quote></div>

This is why i dislike when they hype about a new drug that seems to have so much potential and get us all excited thinking FINALLY something is coming out that will actually make a big difference and then....Kaboom, you never hear a word about it again.<img src="i/expressions/face-icon-small-sad.gif" border="0">

Not saying this is what is happening with PTC124, but in honesty i'd rather hear about a true potential helpful drug when it is already passed all the phases and ready to be out on the market. That way you dont get your hopes up only to be crushed once again, by a "false alarm".

Diane · Jun 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009

just keep in mind many drugs don't get through each of the phases.

so don't be surprised if one day a drug falls out of phase II or phase III..... it's just the nature of drug discovery</end quote></div>

This is why i dislike when they hype about a new drug that seems to have so much potential and get us all excited thinking FINALLY something is coming out that will actually make a big difference and then....Kaboom, you never hear a word about it again.<img src="i/expressions/face-icon-small-sad.gif" border="0">

Not saying this is what is happening with PTC124, but in honesty i'd rather hear about a true potential helpful drug when it is already passed all the phases and ready to be out on the market. That way you dont get your hopes up only to be crushed once again, by a "false alarm".

Diane · Jun 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009

just keep in mind many drugs don't get through each of the phases.

so don't be surprised if one day a drug falls out of phase II or phase III..... it's just the nature of drug discovery</end quote>

This is why i dislike when they hype about a new drug that seems to have so much potential and get us all excited thinking FINALLY something is coming out that will actually make a big difference and then....Kaboom, you never hear a word about it again.<img src="i/expressions/face-icon-small-sad.gif" border="0">

Not saying this is what is happening with PTC124, but in honesty i'd rather hear about a true potential helpful drug when it is already passed all the phases and ready to be out on the market. That way you dont get your hopes up only to be crushed once again, by a "false alarm".

Diane · Jun 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: saveferris2009
 
 just keep in mind many drugs don't get through each of the phases.
 
 
 
 so don't be surprised if one day a drug falls out of phase II or phase III..... it's just the nature of drug discovery</end quote>
 
 This is why i dislike when they hype about a new drug that seems to have so much potential and get us all excited thinking FINALLY something is coming out that will actually make a big difference and then....Kaboom, you never hear a word about it again.<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
 Not saying this is what is happening with PTC124, but in honesty i'd rather hear about a true potential helpful drug when it is already passed all the phases and ready to be out on the market. That way you dont get your hopes up only to be crushed once again, by a "false alarm".

saveferris2009 · Jun 20, 2009

diane i think you bring up a great point.

there are no longer many adults on this board, so your wisdom on this is very important.

we, CFer's about 24 or 25 years and older, have a collective consciousness about being promised the world for 19+ years.

we have been told we've been on the verge of a cure or something to dramatically alter the disease for 19 years.

19 years. 

i'll be happy just like the next guy if something comes to market. but until then, like you diane, i will educate those who are newer to this disease (even though the newbies don't often like to hear from us).

well said, diane

saveferris2009 · Jun 20, 2009

diane i think you bring up a great point.

there are no longer many adults on this board, so your wisdom on this is very important.

we, CFer's about 24 or 25 years and older, have a collective consciousness about being promised the world for 19+ years.

we have been told we've been on the verge of a cure or something to dramatically alter the disease for 19 years.

19 years. 

i'll be happy just like the next guy if something comes to market. but until then, like you diane, i will educate those who are newer to this disease (even though the newbies don't often like to hear from us).

well said, diane

saveferris2009 · Jun 20, 2009

diane i think you bring up a great point.

there are no longer many adults on this board, so your wisdom on this is very important.

we, CFer's about 24 or 25 years and older, have a collective consciousness about being promised the world for 19+ years.

we have been told we've been on the verge of a cure or something to dramatically alter the disease for 19 years.

19 years. 

i'll be happy just like the next guy if something comes to market. but until then, like you diane, i will educate those who are newer to this disease (even though the newbies don't often like to hear from us).

well said, diane

saveferris2009 · Jun 20, 2009

diane i think you bring up a great point.

there are no longer many adults on this board, so your wisdom on this is very important.

we, CFer's about 24 or 25 years and older, have a collective consciousness about being promised the world for 19+ years.

we have been told we've been on the verge of a cure or something to dramatically alter the disease for 19 years.

19 years. 

i'll be happy just like the next guy if something comes to market. but until then, like you diane, i will educate those who are newer to this disease (even though the newbies don't often like to hear from us).

well said, diane

saveferris2009 · Jun 20, 2009

diane i think you bring up a great point.
 
 there are no longer many adults on this board, so your wisdom on this is very important.
 
 we, CFer's about 24 or 25 years and older, have a collective consciousness about being promised the world for 19+ years.
 
 we have been told we've been on the verge of a cure or something to dramatically alter the disease for 19 years.
 
 19 years. 
 
 i'll be happy just like the next guy if something comes to market. but until then, like you diane, i will educate those who are newer to this disease (even though the newbies don't often like to hear from us).
 
 well said, diane

Diane · Jun 20, 2009

You have a point about the parents of the newly diagnosed. All they know is what is going on now-a-days, which is what was going on for many many years (and never came). Promises of a cure, a new treatment that will completely change everything etc. etc.
When i was 19 - 20 years old i remember they had a huge article in the paper and it was all over the news that they found the gene responsible for cf, and the cure is just around the corner. Everyone with cf ( including me) was so EXCITED and THRILLED there was finally going to be a cure or at least a disease altering treatment.
Well i am 44 now and they must have taken a detour and turned the wrong corner because i havent seen anything come of that yet.
Since then they have found Pulmozyme, Tobi and maybe a small handful of other treatments to treat the symptoms, and Thank God they did, But i do not get excited anymore about anything i hear or read about a "promising new drug" . I have been listening to that for so many years and i no longer want to hear it till the drug is on its way to being out on the market. I am not a fan of false hope.
As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.

Diane · Jun 20, 2009

You have a point about the parents of the newly diagnosed. All they know is what is going on now-a-days, which is what was going on for many many years (and never came). Promises of a cure, a new treatment that will completely change everything etc. etc.
When i was 19 - 20 years old i remember they had a huge article in the paper and it was all over the news that they found the gene responsible for cf, and the cure is just around the corner. Everyone with cf ( including me) was so EXCITED and THRILLED there was finally going to be a cure or at least a disease altering treatment.
Well i am 44 now and they must have taken a detour and turned the wrong corner because i havent seen anything come of that yet.
Since then they have found Pulmozyme, Tobi and maybe a small handful of other treatments to treat the symptoms, and Thank God they did, But i do not get excited anymore about anything i hear or read about a "promising new drug" . I have been listening to that for so many years and i no longer want to hear it till the drug is on its way to being out on the market. I am not a fan of false hope.
As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.

Diane · Jun 20, 2009

You have a point about the parents of the newly diagnosed. All they know is what is going on now-a-days, which is what was going on for many many years (and never came). Promises of a cure, a new treatment that will completely change everything etc. etc.
When i was 19 - 20 years old i remember they had a huge article in the paper and it was all over the news that they found the gene responsible for cf, and the cure is just around the corner. Everyone with cf ( including me) was so EXCITED and THRILLED there was finally going to be a cure or at least a disease altering treatment.
Well i am 44 now and they must have taken a detour and turned the wrong corner because i havent seen anything come of that yet.
Since then they have found Pulmozyme, Tobi and maybe a small handful of other treatments to treat the symptoms, and Thank God they did, But i do not get excited anymore about anything i hear or read about a "promising new drug" . I have been listening to that for so many years and i no longer want to hear it till the drug is on its way to being out on the market. I am not a fan of false hope.
As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.

Diane · Jun 20, 2009

You have a point about the parents of the newly diagnosed. All they know is what is going on now-a-days, which is what was going on for many many years (and never came). Promises of a cure, a new treatment that will completely change everything etc. etc.
When i was 19 - 20 years old i remember they had a huge article in the paper and it was all over the news that they found the gene responsible for cf, and the cure is just around the corner. Everyone with cf ( including me) was so EXCITED and THRILLED there was finally going to be a cure or at least a disease altering treatment.
Well i am 44 now and they must have taken a detour and turned the wrong corner because i havent seen anything come of that yet.
Since then they have found Pulmozyme, Tobi and maybe a small handful of other treatments to treat the symptoms, and Thank God they did, But i do not get excited anymore about anything i hear or read about a "promising new drug" . I have been listening to that for so many years and i no longer want to hear it till the drug is on its way to being out on the market. I am not a fan of false hope.
As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.

Diane · Jun 20, 2009

You have a point about the parents of the newly diagnosed. All they know is what is going on now-a-days, which is what was going on for many many years (and never came). Promises of a cure, a new treatment that will completely change everything etc. etc.
 When i was 19 - 20 years old i remember they had a huge article in the paper and it was all over the news that they found the gene responsible for cf, and the cure is just around the corner. Everyone with cf ( including me) was so EXCITED and THRILLED there was finally going to be a cure or at least a disease altering treatment.
 Well i am 44 now and they must have taken a detour and turned the wrong corner because i havent seen anything come of that yet.
 Since then they have found Pulmozyme, Tobi and maybe a small handful of other treatments to treat the symptoms, and Thank God they did, But i do not get excited anymore about anything i hear or read about a "promising new drug" . I have been listening to that for so many years and i no longer want to hear it till the drug is on its way to being out on the market. I am not a fan of false hope.
 As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.

hmw · Jun 21, 2009

<div class="FTQUOTE"><begin quote>As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.</end quote></div>
My daughter was dx'ed this past November at the age of 7. Until 5 days before her dx I had no idea it was even a possibility for her and I knew almost nothing about the disease. I can't imagine why a parent of a child with a disease wouldn't want to learn from people who have the disease themselves either and I am sure many other parents here feel the same way. I don't have CF so the the best I can do is try to connect with others that do have CF, to be able to better understand what my daughter is going through, prepare me for what may crop up in the future, etc. I desperately need support from other parents too, but if I shut myself off from what the adults here with CF had to say- even though what they go through is intimidating for me to deal with sometimes- I would be shooting myself in the foot and denying myself a resource that could be helping my child a lot.

However, please cut us parents some slack too if it yanks on our emotions a bit in the process. There is no greater protective instinct than that of a parent for their child... sometimes that is all you are seeing, not true denial or not wanting to hear how things really are. There is nothing in the baby book to prepare you for hearing that your child has an incurable disease. It's painful to see what they have to go through and may yet go through in future days. It takes time to come to terms with that; it's a grieving process. Just being at a site like this is a big leap forward for many, when it comes to facing up to the dx and what it means.

hmw · Jun 21, 2009

<div class="FTQUOTE"><begin quote>As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.</end quote></div>
My daughter was dx'ed this past November at the age of 7. Until 5 days before her dx I had no idea it was even a possibility for her and I knew almost nothing about the disease. I can't imagine why a parent of a child with a disease wouldn't want to learn from people who have the disease themselves either and I am sure many other parents here feel the same way. I don't have CF so the the best I can do is try to connect with others that do have CF, to be able to better understand what my daughter is going through, prepare me for what may crop up in the future, etc. I desperately need support from other parents too, but if I shut myself off from what the adults here with CF had to say- even though what they go through is intimidating for me to deal with sometimes- I would be shooting myself in the foot and denying myself a resource that could be helping my child a lot.

However, please cut us parents some slack too if it yanks on our emotions a bit in the process. There is no greater protective instinct than that of a parent for their child... sometimes that is all you are seeing, not true denial or not wanting to hear how things really are. There is nothing in the baby book to prepare you for hearing that your child has an incurable disease. It's painful to see what they have to go through and may yet go through in future days. It takes time to come to terms with that; it's a grieving process. Just being at a site like this is a big leap forward for many, when it comes to facing up to the dx and what it means.

hmw · Jun 21, 2009

<div class="FTQUOTE"><begin quote>As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.</end quote></div>
My daughter was dx'ed this past November at the age of 7. Until 5 days before her dx I had no idea it was even a possibility for her and I knew almost nothing about the disease. I can't imagine why a parent of a child with a disease wouldn't want to learn from people who have the disease themselves either and I am sure many other parents here feel the same way. I don't have CF so the the best I can do is try to connect with others that do have CF, to be able to better understand what my daughter is going through, prepare me for what may crop up in the future, etc. I desperately need support from other parents too, but if I shut myself off from what the adults here with CF had to say- even though what they go through is intimidating for me to deal with sometimes- I would be shooting myself in the foot and denying myself a resource that could be helping my child a lot.

However, please cut us parents some slack too if it yanks on our emotions a bit in the process. There is no greater protective instinct than that of a parent for their child... sometimes that is all you are seeing, not true denial or not wanting to hear how things really are. There is nothing in the baby book to prepare you for hearing that your child has an incurable disease. It's painful to see what they have to go through and may yet go through in future days. It takes time to come to terms with that; it's a grieving process. Just being at a site like this is a big leap forward for many, when it comes to facing up to the dx and what it means.

hmw · Jun 21, 2009

<div class="FTQUOTE"><begin quote>As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.</end quote>
My daughter was dx'ed this past November at the age of 7. Until 5 days before her dx I had no idea it was even a possibility for her and I knew almost nothing about the disease. I can't imagine why a parent of a child with a disease wouldn't want to learn from people who have the disease themselves either and I am sure many other parents here feel the same way. I don't have CF so the the best I can do is try to connect with others that do have CF, to be able to better understand what my daughter is going through, prepare me for what may crop up in the future, etc. I desperately need support from other parents too, but if I shut myself off from what the adults here with CF had to say- even though what they go through is intimidating for me to deal with sometimes- I would be shooting myself in the foot and denying myself a resource that could be helping my child a lot.

However, please cut us parents some slack too if it yanks on our emotions a bit in the process. There is no greater protective instinct than that of a parent for their child... sometimes that is all you are seeing, not true denial or not wanting to hear how things really are. There is nothing in the baby book to prepare you for hearing that your child has an incurable disease. It's painful to see what they have to go through and may yet go through in future days. It takes time to come to terms with that; it's a grieving process. Just being at a site like this is a big leap forward for many, when it comes to facing up to the dx and what it means.

hmw · Jun 21, 2009

<div class="FTQUOTE"><begin quote>As for the Newbies not wanting to hear from us, i cant imagine why that would be. We have the disease, and have had it for years and may know "sneaky tricks" and things like that, and can certainly offer advice from experience. We may be a little blunt sometimes about things but thats because we have been there ,done that. I WISH i knew someone older when i was younger so someone could have eased my fears and offered me advice.</end quote>
 My daughter was dx'ed this past November at the age of 7. Until 5 days before her dx I had no idea it was even a possibility for her and I knew almost nothing about the disease. I can't imagine why a parent of a child with a disease wouldn't want to learn from people who have the disease themselves either and I am sure many other parents here feel the same way. I don't have CF so the the best I can do is try to connect with others that do have CF, to be able to better understand what my daughter is going through, prepare me for what may crop up in the future, etc. I desperately need support from other parents too, but if I shut myself off from what the adults here with CF had to say- even though what they go through is intimidating for me to deal with sometimes- I would be shooting myself in the foot and denying myself a resource that could be helping my child a lot.
 
 However, please cut us parents some slack too if it yanks on our emotions a bit in the process. There is no greater protective instinct than that of a parent for their child... sometimes that is all you are seeing, not true denial or not wanting to hear how things really are. There is nothing in the baby book to prepare you for hearing that your child has an incurable disease. It's painful to see what they have to go through and may yet go through in future days. It takes time to come to terms with that; it's a grieving process. Just being at a site like this is a big leap forward for many, when it comes to facing up to the dx and what it means.

PTC 124

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member