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PTC124 (Ataluren)
- Thread starter missT
- Start date
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src="i/expressions/face-icon-small-happy.gif" border="0">
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src="i/expressions/face-icon-small-happy.gif" border="0">
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src="i/expressions/face-icon-small-happy.gif" border="0">
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src="i/expressions/face-icon-small-happy.gif" border="0">
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src="i/expressions/face-icon-small-happy.gif" border="0">
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
When the heel do they intend to update this page?I check everyday!</end quote></div>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>
When the heel do they intend to update this page?I check everyday!</end quote>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
When the heel do they intend to update this page?I check everyday!</end quote>
clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bigstar</b></i>
<br />
<br />When the heel do they intend to update this page?I check everyday!</end quote>
<br />
<br />clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
<br />
<br />When the heel do they intend to update this page?I check everyday!</end quote>
<br />
<br />clinical trials can take years.... hence they don't update the page all that often because tehre's nothing to update
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote></div>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote>
My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
<br />
<br />I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote>
<br />
<br />My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
<br />
<br />Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)
<br />
<br />I go to UNC and they are doing the PTC124 trials there. I'm still trying to see if I can figure out my schedule with work and if it will all be able to coordinate without me loosing my job for being out too many days to make all the study visits....I have a stop mutation (3849+10kbC->T) which is what I was told PTC124 is for so i'm really hoping to work it out! My clinic said they could probably work with me and schedule night and weekend appointments so i can do it. super excited <img src=""></end quote>
<br />
<br />My daughter has the same mutation: I asked Steve at ambry about whether PTC 124 will work for it (since this mutation contains an in-frame stop codon, between exons 19 and 20) and he said no.<img src="i/expressions/face-icon-small-sad.gif" border="0"> b/c it is an itronic mutation.
<br />
<br />Do let me know if you find out more, since I kind of reconciled myself to the idea that we will have to wait for VX 809 (she has d508 on the other allele)