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All I can say is I am sorry. Stay strong! Miracles happen each day.

Wow! just watched the video. I am soooooo happy for those people who have been helped by this drug.  It is really the first drug that I have seen in my lifetime that seems to make a HUGE difference in peoples lives. Let's all hope and pray that Vertex will have drugs that will help the rest of...

Wow! just watched the video. I am soooooo happy for those people who have been helped by this drug. It is really the first drug that I have seen in my lifetime that seems to make a HUGE difference in peoples lives. Let's all hope and pray that Vertex will have drugs that will help the rest of...

<BR>Wow! just watched the video. I am soooooo happy for those people who have been helped by this drug. It is really the first drug that I have seen in my lifetime that seems to make a HUGE difference in peoples lives. Let's all hope and pray that Vertex will have drugs that will help the rest...

Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program? Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the...

Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program? Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the...

Anyone in the NYC area interested in (and qualify for) the Vertex 770 Extended Access Program? <BR>Ugh! i read another person inquiring about the Vx770 and the other "gating mutations". they have to open up this drug to other classes like G551D. I have R114H and I ask anyone who has info if the...

Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would...

Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would...

Hi Kaethe, to answer your question...and I am just a CFer on Ataluren so I am not a Dr--Ok, so in a perfect world if the Kalydeko and ataluren were to work then our bodies would no longer make mucus..so their would no longer be inflammation and infection (to the extent we have it). We would...

Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that.  I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that. I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

<BR>Thanks for posting this. I have been on Ataluren/placebo for a year. I just completed the study so I will get "real drug". I am very excited about that. I would be more then happy to discuss but I cant on the open forum. Please pm me if you want info.

I am 41. My Fev1 is at best 40%. I was diagnosed at 14 years old...due to bad healthcare.

I am 41. My Fev1 is at best 40%. I was diagnosed at 14 years old...due to bad healthcare.

<BR>I am 41. My Fev1 is at best 40%. I was diagnosed at 14 years old...due to bad healthcare.

Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.

Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.

Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.

Great advice from Amy. I also the same exact problem. I have major inflammation and the worst reactive airways. I get closed up from all sorts of things too-perfume-extream heat-extream cold-certain spicy foods-cat dander-dust-you name it. I would love to hear what other people say...I struggle...