Bob Beall, CEO of CF Foundation

J

juliesdreamteam

New member
Guys,

I shot this video at the VLC (Volunteers Leadership Conference) on Friday night.

I apologize about the shaky nature of the video. I tried. The audio is fantastic. We must NEVER tire in our pursuit of finding a cure for CF.

Remember...If you'd like to use the CURECF promo code at your Papa John's, having 20% of your order donated to the CF Foundation, send an email to rich_butler@papajohns.com. Tell him your city/state and that you want to use be able to use the CURECF promo code.

The link to the video is: <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=9gbZhzF5qP0">http://www.youtube.com/watch?v=9gbZhzF5qP0</a>

Keep pushing forward. We are closer than we have ever been to finding a cure.

God Bless,

Roy E. Ice
<a target=_blank class=ftalternatingbarlinklarge href="http://juliesdreamteam.com">www.juliesdreamteam.com</a>
 
J

juliesdreamteam

New member
Guys,

I shot this video at the VLC (Volunteers Leadership Conference) on Friday night.

I apologize about the shaky nature of the video. I tried. The audio is fantastic. We must NEVER tire in our pursuit of finding a cure for CF.

Remember...If you'd like to use the CURECF promo code at your Papa John's, having 20% of your order donated to the CF Foundation, send an email to rich_butler@papajohns.com. Tell him your city/state and that you want to use be able to use the CURECF promo code.

The link to the video is: <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=9gbZhzF5qP0">http://www.youtube.com/watch?v=9gbZhzF5qP0</a>

Keep pushing forward. We are closer than we have ever been to finding a cure.

God Bless,

Roy E. Ice
<a target=_blank class=ftalternatingbarlinklarge href="http://juliesdreamteam.com">www.juliesdreamteam.com</a>
 
J

juliesdreamteam

New member
Guys,
<br />
<br />I shot this video at the VLC (Volunteers Leadership Conference) on Friday night.
<br />
<br />I apologize about the shaky nature of the video. I tried. The audio is fantastic. We must NEVER tire in our pursuit of finding a cure for CF.
<br />
<br />Remember...If you'd like to use the CURECF promo code at your Papa John's, having 20% of your order donated to the CF Foundation, send an email to rich_butler@papajohns.com. Tell him your city/state and that you want to use be able to use the CURECF promo code.
<br />
<br />The link to the video is: <a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=9gbZhzF5qP0">http://www.youtube.com/watch?v=9gbZhzF5qP0</a>
<br />
<br />Keep pushing forward. We are closer than we have ever been to finding a cure.
<br />
<br />God Bless,
<br />
<br />Roy E. Ice
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://juliesdreamteam.com">www.juliesdreamteam.com</a>
 
E

ej0820

New member
I tried to email that address about getting the CF promo code at our papa johns and it was denied and returned saying the address doesn't exist. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
E

ej0820

New member
I tried to email that address about getting the CF promo code at our papa johns and it was denied and returned saying the address doesn't exist. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
E

ej0820

New member
I tried to email that address about getting the CF promo code at our papa johns and it was denied and returned saying the address doesn't exist. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
J

juliesdreamteam

New member
Thanks. You can just send him a regular email at rich_butler@papajohns.com instead of clicking the link (if that's what you did). I probably goofed when I typed it in. I'm kinda new to this posting stuff. I'll look at it. Glad you liked the video.

Roy E. Ice
 
J

juliesdreamteam

New member
Thanks. You can just send him a regular email at rich_butler@papajohns.com instead of clicking the link (if that's what you did). I probably goofed when I typed it in. I'm kinda new to this posting stuff. I'll look at it. Glad you liked the video.

Roy E. Ice
 
J

juliesdreamteam

New member
Thanks. You can just send him a regular email at rich_butler@papajohns.com instead of clicking the link (if that's what you did). I probably goofed when I typed it in. I'm kinda new to this posting stuff. I'll look at it. Glad you liked the video.
<br />
<br />Roy E. Ice
 
J

just1more

New member
Just a quick summary for anyone not wanting/able to watch his video (combined with facts from the manufacturer just released on their Phase 3 initial results):

VX-770 in a trial of 161 (83-VX770, 78-Placebo) patients with the specific mutation, G551D (only 4% of the CF population); they saw an average improvement in FEV1 of 10.5% over 48 weeks and a reduction in exacerbation rates.

This has the potential to be an excellent treatment option for those with this mutation, and Vertex states they hope to make initial application to the FDA this year.
 
J

just1more

New member
Just a quick summary for anyone not wanting/able to watch his video (combined with facts from the manufacturer just released on their Phase 3 initial results):

VX-770 in a trial of 161 (83-VX770, 78-Placebo) patients with the specific mutation, G551D (only 4% of the CF population); they saw an average improvement in FEV1 of 10.5% over 48 weeks and a reduction in exacerbation rates.

This has the potential to be an excellent treatment option for those with this mutation, and Vertex states they hope to make initial application to the FDA this year.
 
J

just1more

New member
Just a quick summary for anyone not wanting/able to watch his video (combined with facts from the manufacturer just released on their Phase 3 initial results):
<br />
<br />VX-770 in a trial of 161 (83-VX770, 78-Placebo) patients with the specific mutation, G551D (only 4% of the CF population); they saw an average improvement in FEV1 of 10.5% over 48 weeks and a reduction in exacerbation rates.
<br />
<br />This has the potential to be an excellent treatment option for those with this mutation, and Vertex states they hope to make initial application to the FDA this year.
 
M

musclemania70

New member
Does this mean that the drug would be available in the Early Access Program for those who qualify? I don't have that mutuation but I am just wondering how many people this would affect.

And what I want to know is for the people whose FEV1's were below 50%, did they also see the same improvement? If so, that is remarkable. Amazing. Miraculous. ect ect.
 
M

musclemania70

New member
Does this mean that the drug would be available in the Early Access Program for those who qualify? I don't have that mutuation but I am just wondering how many people this would affect.

And what I want to know is for the people whose FEV1's were below 50%, did they also see the same improvement? If so, that is remarkable. Amazing. Miraculous. ect ect.
 
M

musclemania70

New member
Does this mean that the drug would be available in the Early Access Program for those who qualify? I don't have that mutuation but I am just wondering how many people this would affect.
<br />
<br />And what I want to know is for the people whose FEV1's were below 50%, did they also see the same improvement? If so, that is remarkable. Amazing. Miraculous. ect ect.
 
J

juliesdreamteam

New member
1st things 1st....There was no mention of the EAP. So I can't really speak to that.

2nd....The trials were done on CF patients with FEV1 at 40%. In the video, Beall mentions, "16%-17%" improvement in FEV1 percentages. The VX-707 trail was done with cytics that had the specific mutation, G551D. While that is 4% of the population it offers a road map that MAY lead to futher advancements in the treatment of others. Amazing indeed.

Keep the scientist in your prayers. They are doing some tuff work with the hopes and dreams of our entire CF community hanging in the balance.

God Bless,

Roy E. Ice
Julie's Dream Team
 
J

juliesdreamteam

New member
1st things 1st....There was no mention of the EAP. So I can't really speak to that.

2nd....The trials were done on CF patients with FEV1 at 40%. In the video, Beall mentions, "16%-17%" improvement in FEV1 percentages. The VX-707 trail was done with cytics that had the specific mutation, G551D. While that is 4% of the population it offers a road map that MAY lead to futher advancements in the treatment of others. Amazing indeed.

Keep the scientist in your prayers. They are doing some tuff work with the hopes and dreams of our entire CF community hanging in the balance.

God Bless,

Roy E. Ice
Julie's Dream Team
 
J

juliesdreamteam

New member
1st things 1st....There was no mention of the EAP. So I can't really speak to that.
<br />
<br />2nd....The trials were done on CF patients with FEV1 at 40%. In the video, Beall mentions, "16%-17%" improvement in FEV1 percentages. The VX-707 trail was done with cytics that had the specific mutation, G551D. While that is 4% of the population it offers a road map that MAY lead to futher advancements in the treatment of others. Amazing indeed.
<br />
<br />Keep the scientist in your prayers. They are doing some tuff work with the hopes and dreams of our entire CF community hanging in the balance.
<br />
<br />God Bless,
<br />
<br />Roy E. Ice
<br />Julie's Dream Team
 
J

just1more

New member
Sorry, I normally quote sources, see link to actual press release from Vertex below.

Compared to the placebo group, the improvement was 10.6% at 24wks, and 10.5% at 48wks. It also mentions a 16.7% improvement but does not clarify the difference.

In addition FEV1 for the study group was ~63.5 (so ~50 pre-treatment??)


Vertex Pharmaceutical Press Release: <a target=_blank class=ftalternatingbarlinklarge href="http://investors.vrtx.com/releasedetail.cfm?ReleaseID=551869">http://investors.vrtx.com/rele...l.cfm?ReleaseID=551869</a>
 
J

just1more

New member
Sorry, I normally quote sources, see link to actual press release from Vertex below.

Compared to the placebo group, the improvement was 10.6% at 24wks, and 10.5% at 48wks. It also mentions a 16.7% improvement but does not clarify the difference.

In addition FEV1 for the study group was ~63.5 (so ~50 pre-treatment??)


Vertex Pharmaceutical Press Release: <a target=_blank class=ftalternatingbarlinklarge href="http://investors.vrtx.com/releasedetail.cfm?ReleaseID=551869">http://investors.vrtx.com/rele...l.cfm?ReleaseID=551869</a>
 
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