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JennyC - yes, she had sequencing done and nothing! She has a cousin with CF that has the same unknown mutation, so our family is of interest to our center. Emily is going to be getting the MAP testing sponsored by the CFF and Hopkins to try again to find that mutation. Odds are very good you...

JennyC - yes, she had sequencing done and nothing! She has a cousin with CF that has the same unknown mutation, so our family is of interest to our center. Emily is going to be getting the MAP testing sponsored by the CFF and Hopkins to try again to find that mutation. Odds are very good you...

I agree!!!! I just wish they would give us a press release- the info has been gathered and examined and turned inside out by now without a doubt. These 'sources' at CFF and Vertex and even drs at some centers, according to who you ask all around the cf community are leaking all kinds of stuff...

I agree!!!! I just wish they would give us a press release- the info has been gathered and examined and turned inside out by now without a doubt. These 'sources' at CFF and Vertex and even drs at some centers, according to who you ask all around the cf community are leaking all kinds of stuff...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Does anyone recall when vx770 was originally projected to make it through trials?!? Seems like 2016 for 661 is a long time--- and that 770 went from phase 2 to approved much quicker...</end quote> Your post made me...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Does anyone recall when vx770 was originally projected to make it through trials?!? Seems like 2016 for 661 is a long time--- and that 770 went from phase 2 to approved much quicker...</end quote> Your post made me...

I don't think there are any other correctors right now aside from 809 and 661, (now it would just be 661.) What I was referring to was information presented at the conference, indicating that more than one might be NEEDED. Here is a good post, written by a woman who attended the conference and...

I don't think there are any other correctors right now aside from 809 and 661, (now it would just be 661.) What I was referring to was information presented at the conference, indicating that more than one might be NEEDED. Here is a good post, written by a woman who attended the conference and...

Anomie was correct. At the conference last fall and at another more recently, it was discussed that two correctors may be needed in addition to Kalydeco (for a total of 3 medications.)

Anomie was correct. At the conference last fall and at another more recently, it was discussed that two correctors may be needed in addition to Kalydeco (for a total of 3 medications.)

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> The unimpressive results from 809 were published 6 months ago. How are you surprised at all this? I don't get it.</end quote> The results we received all those months ago were from an earlier phase of the...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> The unimpressive results from 809 were published 6 months ago. How are you surprised at all this? I don't get it.</end quote> The results we received all those months ago were from an earlier phase of the...

Emily started hypersal about a year ago. She did it for the first time at clinic to be sure she could tolerate it ok since it can cause bronchospasm in some. It is important to use a bronchodilator first - a few don't need to, but most tolerate it much better if they do. We were told to give...

Emily started hypersal about a year ago. She did it for the first time at clinic to be sure she could tolerate it ok since it can cause bronchospasm in some. It is important to use a bronchodilator first - a few don't need to, but most tolerate it much better if they do. We were told to give...

Oh Tom, this is just heartbreaking. I am so so sorry. You and your family are in my prayers ...wishing you the comfort, peace and strength you all need to get through the difficult times ahead as a family.

Oh Tom, this is just heartbreaking. I am so so sorry. You and your family are in my prayers ...wishing you the comfort, peace and strength you all need to get through the difficult times ahead as a family.

Emily has a MicKey, which sticks out farther than an AMT would, and I'd definitely go for the AMT or a bard-compatible type button given a choice. Discuss the active lifestyle your daughter has when making the choice. If you dont have the support of the dr you are working with go to another. AMT...

Emily has a MicKey, which sticks out farther than an AMT would, and I'd definitely go for the AMT or a bard-compatible type button given a choice. Discuss the active lifestyle your daughter has when making the choice. If you dont have the support of the dr you are working with go to another. AMT...

The 5/7/9polyT's are of interest when it comes to what other mutations they could be paired with. For example, the R117H mutation on its own usually only causes very mild disease and/or CBAVD, however when you add a 5T variant, it behaves more like a classic disease causing mutation. In your...

The 5/7/9polyT's are of interest when it comes to what other mutations they could be paired with. For example, the R117H mutation on its own usually only causes very mild disease and/or CBAVD, however when you add a 5T variant, it behaves more like a classic disease causing mutation. In your...