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

Thread starter my65roses4me
Start date Mar 27, 2009

S

saveferris2009

New member

Mar 28, 2009

#41

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

Mar 28, 2009

#42

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

Mar 28, 2009

#43

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

Mar 28, 2009

#44

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

Mar 28, 2009

#45

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">

J

Jeana

New member

Mar 28, 2009

#46

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

Mar 28, 2009

#47

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

Mar 28, 2009

#48

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

Mar 28, 2009

#49

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

Mar 28, 2009

#50

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

JennifersHope

New member

Mar 28, 2009

#51

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

Mar 28, 2009

#52

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

Mar 28, 2009

#53

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

Mar 28, 2009

#54

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

Mar 28, 2009

#55

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 />

G

grassisgreener

New member

Mar 28, 2009

#56

<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

Mar 28, 2009

#57

<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

Mar 28, 2009

#58

<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

Mar 28, 2009

#59

<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

Mar 28, 2009

#60

<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 />

You must log in or register to reply here.

Share:

Facebook Twitter Reddit Pinterest Tumblr WhatsApp Email Link

This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.

Accept Learn more…

Top