Insights from current 661 or 809 trials

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Aboveallislove

Super Moderator
We're new to the forum and like the rest of you are desparate for any insights 661 and 809. We are so overjoyed by the gift 770 is to those who benefit and look forward to the day when there is drug that can help more CFers. I've picked up bits and pieces from some of the other messages and blogs, but thought it might be helpful if we had one category where people could share their experiences with the current 661 and 809 trials. I do not know what the parameters are for participants for what you can share, but anything you can provides such hope to us who can't yet participate. (Our son is 2 1/2).
 
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Aboveallislove

Super Moderator
We're new to the forum and like the rest of you are desparate for any insights 661 and 809. We are so overjoyed by the gift 770 is to those who benefit and look forward to the day when there is drug that can help more CFers. I've picked up bits and pieces from some of the other messages and blogs, but thought it might be helpful if we had one category where people could share their experiences with the current 661 and 809 trials. I do not know what the parameters are for participants for what you can share, but anything you can provides such hope to us who can't yet participate. (Our son is 2 1/2).
 
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mom2JD

New member
Usually participants are not allowed to discuss experiences in public while being in a trial... Here is ablog bysomeone on VX-661 which is really encouraging:
http://www.cfgirlseyeofthetiger.com/blog/2012/03/20/Halfway-through-.aspx
 
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mom2JD

New member
Usually participants are not allowed to discuss experiences in public while being in a trial... Here is ablog bysomeone on VX-661 which is really encouraging:
http://www.cfgirlseyeofthetiger.com/blog/2012/03/20/Halfway-through-.aspx
 
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Anomie

New member
The 661 seems to be doing as good as 770 did and I know that vertex is really excited about it. 809 however got the axe and clinical trials for it are being terminated.
 
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Anomie

New member
The 661 seems to be doing as good as 770 did and I know that vertex is really excited about it. 809 however got the axe and clinical trials for it are being terminated.
 
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Anomie

New member
She has a more current post on her blog. Her lung function went up another 3% for a total of 14% in 3 weeks. WOW!! Let's just hope she's not an anomalie.
 
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Anomie

New member
She has a more current post on her blog. Her lung function went up another 3% for a total of 14% in 3 weeks. WOW!! Let's just hope she's not an anomalie.
 
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mamaScarlett

Active member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> The 661 seems to be doing as good as 770 did and I know that vertex is really excited about it. 809 however got the axe and clinical trials for it are being terminated.</end quote>

The press release from cff yesterday from Robert Bealle says the opposite of this.
I called my cf center last evening after reading conflicting things and they confirm-809 has not been axed, and is still very much alive.
No offense to you personally, bc I have read info all over the board re this, but I wish people would get their facts straight before posting this.
 
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mamaScarlett

Active member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Anomie</b></i> The 661 seems to be doing as good as 770 did and I know that vertex is really excited about it. 809 however got the axe and clinical trials for it are being terminated.</end quote>

The press release from cff yesterday from Robert Bealle says the opposite of this.
I called my cf center last evening after reading conflicting things and they confirm-809 has not been axed, and is still very much alive.
No offense to you personally, bc I have read info all over the board re this, but I wish people would get their facts straight before posting this.
 
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JENNYC

New member
http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm
This is what I received an email about yesterday, and think what mamascarlett might be referring to.
 
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JENNYC

New member
http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm
This is what I received an email about yesterday, and think what mamascarlett might be referring to.
 
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mamaScarlett

Active member
its getting frustrating hearing negative around the sites, but hearing the opposite from the 'experts'.

<a href="http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm">http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm</a>
 
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mamaScarlett

Active member
its getting frustrating hearing negative around the sites, but hearing the opposite from the 'experts'.

<a href="http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm">http://www.cff.org/aboutCFFoundation/Publications/connections/March2012/FDA-Approval-of-Kalydeco.cfm</a>
 
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