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My information is VX-770 for the gene mutation G551D expected within 5 years, final trials going ahead in 2010-2012, so could be 2012 at the earliest. VX - 890 which will be needed in addition to VX=770 for people with mutation delts F508 expected within 10 years
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saveferris2009
New member
5 years at the earliest sounds about right for VX-770, yes
saveferris2009
New member
5 years at the earliest sounds about right for VX-770, yes
saveferris2009
New member
5 years at the earliest sounds about right for VX-770, yes
saveferris2009
New member
5 years at the earliest sounds about right for VX-770, yes
saveferris2009
New member
5 years at the earliest sounds about right for VX-770, yes
This is purely speculation on the part of my CF doc, but he says that VX 770 may have some benefit to delta 508s even without VX 809, which is why some clinics (mine included) are undergoing testing on it. Apparently, some of our CFTR may make it to the edge of the cell and then the VX 770 could correct this small number of CFTR and help our FEV1 to some extent. This MAY be possible. It is only a theory. It is really hard to predict and that is why we need the study.
This is purely speculation on the part of my CF doc, but he says that VX 770 may have some benefit to delta 508s even without VX 809, which is why some clinics (mine included) are undergoing testing on it. Apparently, some of our CFTR may make it to the edge of the cell and then the VX 770 could correct this small number of CFTR and help our FEV1 to some extent. This MAY be possible. It is only a theory. It is really hard to predict and that is why we need the study.
This is purely speculation on the part of my CF doc, but he says that VX 770 may have some benefit to delta 508s even without VX 809, which is why some clinics (mine included) are undergoing testing on it. Apparently, some of our CFTR may make it to the edge of the cell and then the VX 770 could correct this small number of CFTR and help our FEV1 to some extent. This MAY be possible. It is only a theory. It is really hard to predict and that is why we need the study.
This is purely speculation on the part of my CF doc, but he says that VX 770 may have some benefit to delta 508s even without VX 809, which is why some clinics (mine included) are undergoing testing on it. Apparently, some of our CFTR may make it to the edge of the cell and then the VX 770 could correct this small number of CFTR and help our FEV1 to some extent. This MAY be possible. It is only a theory. It is really hard to predict and that is why we need the study.
This is purely speculation on the part of my CF doc, but he says that VX 770 may have some benefit to delta 508s even without VX 809, which is why some clinics (mine included) are undergoing testing on it. Apparently, some of our CFTR may make it to the edge of the cell and then the VX 770 could correct this small number of CFTR and help our FEV1 to some extent. This MAY be possible. It is only a theory. It is really hard to predict and that is why we need the study.
What's most important to remember especially for the parents of little one's with cf is something that has guided me and encouraged me to do my treatments each and every day of my life up to this point...
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
What's most important to remember especially for the parents of little one's with cf is something that has guided me and encouraged me to do my treatments each and every day of my life up to this point...
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
What's most important to remember especially for the parents of little one's with cf is something that has guided me and encouraged me to do my treatments each and every day of my life up to this point...
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
What's most important to remember especially for the parents of little one's with cf is something that has guided me and encouraged me to do my treatments each and every day of my life up to this point...
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
What's most important to remember especially for the parents of little one's with cf is something that has guided me and encouraged me to do my treatments each and every day of my life up to this point...
<br />
<br />When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
<br />
<br />So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
<br />
<br />As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
<br />
<br />I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.
<br />
<br />When VX770 or 809 or someother chloride channel fixing drug comes a long it will only at best hault the cf in it's tracks not fix any damage that has been done.
<br />
<br />So work hard now both caring for the lungs, etc and FUNDRAISING bc a cure-like treatment is in the not so distant future. And just maybe you/your child will be able to receive it with not so damaged lungs.
<br />
<br />As for me, I am at the tipping point of a drastic change in quality of life. If I loose even 5-10% more lung function life won't be the same. This is becuase I am at 65% FEV1. V770 will likely get me to at best 78% which would be awesome but not 100% because of damage to my lungs.
<br />
<br />I am soon to be 31 yrs old with cf by mutations DF508 and G551D. My son also has cf. He has G551D and S1235R. I believe we were placed on this earth to help find a cure for cf.