Hi, I am waiting to start the PTC 124 (ataluren) study in nyc. I talked to one or two other Cfer's who have started. I know there are others who are also on the drug and was hoping you might want to PM me to share progress? I am way excited about this drug (so is my doc). I know alot of peeps on this site dont get their hopes up when it comes to a cure but I am way optimistic. Anyway, we are all in this fight together! Please feel free to PM me<img src="i/expressions/praying.gif" border="0">.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Any PTC124 (atalurens) out there?
- Thread starter missT
- Start date
Hi, I am waiting to start the PTC 124 (ataluren) study in nyc. I talked to one or two other Cfer's who have started. I know there are others who are also on the drug and was hoping you might want to PM me to share progress? I am way excited about this drug (so is my doc). I know alot of peeps on this site dont get their hopes up when it comes to a cure but I am way optimistic. Anyway, we are all in this fight together! Please feel free to PM me<img src="i/expressions/praying.gif" border="0">.
Hi, I am waiting to start the PTC 124 (ataluren) study in nyc. I talked to one or two other Cfer's who have started. I know there are others who are also on the drug and was hoping you might want to PM me to share progress? I am way excited about this drug (so is my doc). I know alot of peeps on this site dont get their hopes up when it comes to a cure but I am way optimistic. Anyway, we are all in this fight together! Please feel free to PM me<img src="i/expressions/praying.gif" border="0">.
princessjdc
New member
Im really excited for the drug, can't wait for Ataluren to be out to the public. Ive already told my doc that when it comes out, that I want to be on that drug. I will be very persistant when that time comes to get my hands on it.
Both of my mutations are G542X.
And good luck on the trial, I would love to here how its going/progress.
Both of my mutations are G542X.
And good luck on the trial, I would love to here how its going/progress.
princessjdc
New member
Im really excited for the drug, can't wait for Ataluren to be out to the public. Ive already told my doc that when it comes out, that I want to be on that drug. I will be very persistant when that time comes to get my hands on it.
Both of my mutations are G542X.
And good luck on the trial, I would love to here how its going/progress.
Both of my mutations are G542X.
And good luck on the trial, I would love to here how its going/progress.
princessjdc
New member
Im really excited for the drug, can't wait for Ataluren to be out to the public. Ive already told my doc that when it comes out, that I want to be on that drug. I will be very persistant when that time comes to get my hands on it.
<br />
<br />Both of my mutations are G542X.
<br />
<br />And good luck on the trial, I would love to here how its going/progress.
<br />
<br />Both of my mutations are G542X.
<br />
<br />And good luck on the trial, I would love to here how its going/progress.
Jennifer, I will def let you know how I am feeling. I am starting in two weeks. Hopefully, I will get the drug and not placebo. I have done hours, and hours of web research. My doc seems excited but she seems more excited about Vertex. I am just hoping it stabilizes my 40 FEV1. I would be more then happy living with 40! The Vertex (as I understand) will not help my mutations.
Jennifer, I will def let you know how I am feeling. I am starting in two weeks. Hopefully, I will get the drug and not placebo. I have done hours, and hours of web research. My doc seems excited but she seems more excited about Vertex. I am just hoping it stabilizes my 40 FEV1. I would be more then happy living with 40! The Vertex (as I understand) will not help my mutations.
Jennifer, I will def let you know how I am feeling. I am starting in two weeks. Hopefully, I will get the drug and not placebo. I have done hours, and hours of web research. My doc seems excited but she seems more excited about Vertex. I am just hoping it stabilizes my 40 FEV1. I would be more then happy living with 40! The Vertex (as I understand) will not help my mutations.
Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and am happy to say that I was part of bringing Pulmozyme and Cayston on the market. Woohoo! I guess you can say I'm a HUGE clinical trial cheerleader because if us CFer's don't do them who else will. My FEV1 is 47% and I'm wishing for some magic medicine that will make my FEV1 shoot to the 90's, keep me out of the hospital, and eventually be thee cure. Here is hoping!
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and am happy to say that I was part of bringing Pulmozyme and Cayston on the market. Woohoo! I guess you can say I'm a HUGE clinical trial cheerleader because if us CFer's don't do them who else will. My FEV1 is 47% and I'm wishing for some magic medicine that will make my FEV1 shoot to the 90's, keep me out of the hospital, and eventually be thee cure. Here is hoping!
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hey missT! I've been in the PTC124 (ataluren) clinical trial for a good 9 months now. Like you, I was super excited when I found out that I could partake in this trial and still am optimistic that a cure is just around the corner. I have participated in 6 clinical trials throughout my life and am happy to say that I was part of bringing Pulmozyme and Cayston on the market. Woohoo! I guess you can say I'm a HUGE clinical trial cheerleader because if us CFer's don't do them who else will. My FEV1 is 47% and I'm wishing for some magic medicine that will make my FEV1 shoot to the 90's, keep me out of the hospital, and eventually be thee cure. Here is hoping!
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
For others wanting to know more about the clinical trial, here is a good info link: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/FAQs/Ataluren/
">http://www.cff.org/research/Cl...earch/FAQs/Ataluren/
</a>
Good luck missT and feel free to PM me. <img src="i/expressions/face-icon-small-smile.gif" border="0">