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Breaking News!!!!!!!!!!!!!!!!!!!!!!!

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saveferris2009

New member
just to clarify it's once a day every day, not once every 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

the Phase II study happens to last 28 days, but patients will be taking it every day for those 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks for the shout out to my twitter account Jeana. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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saveferris2009

New member
just to clarify it's once a day every day, not once every 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

the Phase II study happens to last 28 days, but patients will be taking it every day for those 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks for the shout out to my twitter account Jeana. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
just to clarify it's once a day every day, not once every 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

the Phase II study happens to last 28 days, but patients will be taking it every day for those 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks for the shout out to my twitter account Jeana. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
just to clarify it's once a day every day, not once every 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

the Phase II study happens to last 28 days, but patients will be taking it every day for those 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">

thanks for the shout out to my twitter account Jeana. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

saveferris2009

New member
just to clarify it's once a day every day, not once every 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />the Phase II study happens to last 28 days, but patients will be taking it every day for those 28 days <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />thanks for the shout out to my twitter account Jeana. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Jeana

New member
Ooops! I meant to type taken once every day for 28 days. I must have been tired. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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Jeana

New member
Ooops! I meant to type taken once every day for 28 days. I must have been tired. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
J

Jeana

New member
Ooops! I meant to type taken once every day for 28 days. I must have been tired. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
J

Jeana

New member
Ooops! I meant to type taken once every day for 28 days. I must have been tired. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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Jeana

New member
Ooops! I meant to type taken once every day for 28 days. I must have been tired. <img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
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JennifersHope

New member
Thanks for clearing that up for me, I should have read the study better.. I am so excited for you guys though and cautiously optimistic..Lets hope this is the one that realyl works..

I had a picture in my head last night of Max Lisa's son being a grown adult saying " when I was born they didn't even have a cure for CF yet " I would be so excited to see that dream come true... It was so odd, he was talking to his girlfriend telling her that ...

anyway, I am hopeful for you guys
 
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JennifersHope

New member
Thanks for clearing that up for me, I should have read the study better.. I am so excited for you guys though and cautiously optimistic..Lets hope this is the one that realyl works..

I had a picture in my head last night of Max Lisa's son being a grown adult saying " when I was born they didn't even have a cure for CF yet " I would be so excited to see that dream come true... It was so odd, he was talking to his girlfriend telling her that ...

anyway, I am hopeful for you guys
 
J

JennifersHope

New member
Thanks for clearing that up for me, I should have read the study better.. I am so excited for you guys though and cautiously optimistic..Lets hope this is the one that realyl works..

I had a picture in my head last night of Max Lisa's son being a grown adult saying " when I was born they didn't even have a cure for CF yet " I would be so excited to see that dream come true... It was so odd, he was talking to his girlfriend telling her that ...

anyway, I am hopeful for you guys
 
J

JennifersHope

New member
Thanks for clearing that up for me, I should have read the study better.. I am so excited for you guys though and cautiously optimistic..Lets hope this is the one that realyl works..

I had a picture in my head last night of Max Lisa's son being a grown adult saying " when I was born they didn't even have a cure for CF yet " I would be so excited to see that dream come true... It was so odd, he was talking to his girlfriend telling her that ...

anyway, I am hopeful for you guys
 
J

JennifersHope

New member
Thanks for clearing that up for me, I should have read the study better.. I am so excited for you guys though and cautiously optimistic..Lets hope this is the one that realyl works..
<br />
<br />I had a picture in my head last night of Max Lisa's son being a grown adult saying " when I was born they didn't even have a cure for CF yet " I would be so excited to see that dream come true... It was so odd, he was talking to his girlfriend telling her that ...
<br />
<br />anyway, I am hopeful for you guys
<br />
<br />
 
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grassisgreener

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

I got this email as well, the thing I wondering is they are letting ppl in the trial with the DF508 gene which I am so thrilled about for everyone that can particpate..



I don't have that gene, do we know if the drug is specifically targeted for that gene, or will it help all CFers? I would think they are using that gene because it is so well known and most common, but I think also that anything that is going to improve the chloride channel will help all Cfers? Does anyone know?</end quote></div>

My daughter's doctor is on the board of directors for this trial so I asked her this question a couple of weeks ago and she basically said that it depends on how the mutation affects the CFTR as to whether it could be corrected. If the non-DF508 mutation affects the CFTR in a similar way, then it may still work. It really sounded like there could be some people without DF508 that may benefit from this as well, I will be hoping so for you and any others without DF508!

ETA: Correction, I believe my daughter's doctor is on the "steering committee" not the board of directors.
 
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grassisgreener

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

I got this email as well, the thing I wondering is they are letting ppl in the trial with the DF508 gene which I am so thrilled about for everyone that can particpate..



I don't have that gene, do we know if the drug is specifically targeted for that gene, or will it help all CFers? I would think they are using that gene because it is so well known and most common, but I think also that anything that is going to improve the chloride channel will help all Cfers? Does anyone know?</end quote></div>

My daughter's doctor is on the board of directors for this trial so I asked her this question a couple of weeks ago and she basically said that it depends on how the mutation affects the CFTR as to whether it could be corrected. If the non-DF508 mutation affects the CFTR in a similar way, then it may still work. It really sounded like there could be some people without DF508 that may benefit from this as well, I will be hoping so for you and any others without DF508!

ETA: Correction, I believe my daughter's doctor is on the "steering committee" not the board of directors.
 
G

grassisgreener

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

I got this email as well, the thing I wondering is they are letting ppl in the trial with the DF508 gene which I am so thrilled about for everyone that can particpate..



I don't have that gene, do we know if the drug is specifically targeted for that gene, or will it help all CFers? I would think they are using that gene because it is so well known and most common, but I think also that anything that is going to improve the chloride channel will help all Cfers? Does anyone know?</end quote></div>

My daughter's doctor is on the board of directors for this trial so I asked her this question a couple of weeks ago and she basically said that it depends on how the mutation affects the CFTR as to whether it could be corrected. If the non-DF508 mutation affects the CFTR in a similar way, then it may still work. It really sounded like there could be some people without DF508 that may benefit from this as well, I will be hoping so for you and any others without DF508!

ETA: Correction, I believe my daughter's doctor is on the "steering committee" not the board of directors.
 
G

grassisgreener

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

I got this email as well, the thing I wondering is they are letting ppl in the trial with the DF508 gene which I am so thrilled about for everyone that can particpate..



I don't have that gene, do we know if the drug is specifically targeted for that gene, or will it help all CFers? I would think they are using that gene because it is so well known and most common, but I think also that anything that is going to improve the chloride channel will help all Cfers? Does anyone know?</end quote>

My daughter's doctor is on the board of directors for this trial so I asked her this question a couple of weeks ago and she basically said that it depends on how the mutation affects the CFTR as to whether it could be corrected. If the non-DF508 mutation affects the CFTR in a similar way, then it may still work. It really sounded like there could be some people without DF508 that may benefit from this as well, I will be hoping so for you and any others without DF508!

ETA: Correction, I believe my daughter's doctor is on the "steering committee" not the board of directors.
 
G

grassisgreener

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennifersHope</b></i>
<br />
<br />I got this email as well, the thing I wondering is they are letting ppl in the trial with the DF508 gene which I am so thrilled about for everyone that can particpate..
<br />
<br />
<br />
<br />I don't have that gene, do we know if the drug is specifically targeted for that gene, or will it help all CFers? I would think they are using that gene because it is so well known and most common, but I think also that anything that is going to improve the chloride channel will help all Cfers? Does anyone know?</end quote>
<br />
<br />My daughter's doctor is on the board of directors for this trial so I asked her this question a couple of weeks ago and she basically said that it depends on how the mutation affects the CFTR as to whether it could be corrected. If the non-DF508 mutation affects the CFTR in a similar way, then it may still work. It really sounded like there could be some people without DF508 that may benefit from this as well, I will be hoping so for you and any others without DF508!
<br />
<br />ETA: Correction, I believe my daughter's doctor is on the "steering committee" not the board of directors.
<br />
 
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