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I'm actually part of this study, though I obviously must keep quiet about my results so far. Just wanted to say that I actually hit all three qualifiers (diagnosed at 20, sweat test at 35), the most surprising was that I was the normal range for pancreatic sufficiency (I believe my number was in...

Interesting. I have a residual function mutation that Kalydeco works on and one nonsense that theoretically should work with Ataluren. I wonder how much (if any?) benefit I would get from Ataluren combined...Kalydeco is already very effective by itself.

It's a Class III mutation and Kalydeco alone does not work on that mutation, according to the Vertex presentation slides.

Just a quick update: I got into the study. I don't think I can say much on a public forum just yet, but I'm very excited. My goal is to keep notes and I will probably start a blog with vital info once the study is complete, since it will probably be relevant to other CF patients with residual...

^ My doctor is trying to get me into the study at NJH, so we are on a holding pattern until we know if I got in or not.

Yeah, finding this out through my own basic research was...interesting. The main issue is that I live in a huge city and my CF center serves a lot of patients. I don't blame the CF team for having their hands full with more pressing matters and higher risk patients versus cross-referencing every...

Thanks for the replies. 90% normal function would be amazing. Since I posted initially, I had a talk with the nurse practicioner at my clinic, I showed her the images and she said she would consult with the doctor about getting it off-label. The research coordinator and the doctor also called...

Hello, I haven't posted on here, but I've been registered for awhile. I'm 30 with CF, my FEV1 is around 45%, and my mutations are W1282X and D579G. I hadn't done much research into Kalydeco or VX-809 because I knew both weren't really covered under my somewhat rare mutations. However, I've been...

I live and work in Los Angeles, so I'm no stranger to bad pollution. I am going to bring masks, both my mother and a co-worker (both have been) recommended those. Apparently, napkins and tissues are a premium over there, I was recommended to bring multiple packs of travel tissues. I won't be...

I live and work in Los Angeles, so I'm no stranger to bad pollution. I am going to bring masks, both my mother and a co-worker (both have been) recommended those. Apparently, napkins and tissues are a premium over there, I was recommended to bring multiple packs of travel tissues. I won't be...

I live and work in Los Angeles, so I'm no stranger to bad pollution. I am going to bring masks, both my mother and a co-worker (both have been) recommended those. Apparently, napkins and tissues are a premium over there, I was recommended to bring multiple packs of travel tissues. I won't be...

I live and work in Los Angeles, so I'm no stranger to bad pollution. I am going to bring masks, both my mother and a co-worker (both have been) recommended those. Apparently, napkins and tissues are a premium over there, I was recommended to bring multiple packs of travel tissues. I won't be...

I live and work in Los Angeles, so I'm no stranger to bad pollution. I am going to bring masks, both my mother and a co-worker (both have been) recommended those. Apparently, napkins and tissues are a premium over there, I was recommended to bring multiple packs of travel tissues. <br />I won't...

Nightwriter, thank you for the tip to check the wattage. The Vest is rated at 400w, so any of those converters might burn out. The voltage is also rated at 120-230, so the 120 is technically "above" the 100v for Japan. At least the Hz is 50-60. I'm going to call HillRom on Monday and see what...

Nightwriter, thank you for the tip to check the wattage. The Vest is rated at 400w, so any of those converters might burn out. The voltage is also rated at 120-230, so the 120 is technically "above" the 100v for Japan. At least the Hz is 50-60. I'm going to call HillRom on Monday and see what...

Nightwriter, thank you for the tip to check the wattage. The Vest is rated at 400w, so any of those converters might burn out. The voltage is also rated at 120-230, so the 120 is technically "above" the 100v for Japan. At least the Hz is 50-60. I'm going to call HillRom on Monday and see what...

Nightwriter, thank you for the tip to check the wattage. The Vest is rated at 400w, so any of those converters might burn out. The voltage is also rated at 120-230, so the 120 is technically "above" the 100v for Japan. At least the Hz is 50-60. I'm going to call HillRom on Monday and see what...

Nightwriter, thank you for the tip to check the wattage. The Vest is rated at 400w, so any of those converters might burn out. The voltage is also rated at 120-230, so the 120 is technically "above" the 100v for Japan. At least the Hz is 50-60. <br />I'm going to call HillRom on Monday and see...

Thanks for the advice so far! I'm a fairly regular traveller within the US (lots of business trips to Orlando) so I'm well aware of the TSA rules and guidelines. I never check any of my medical supplies (although I do put an extra stash of enzymes and albuterol in my checked stuff) and always...

Thanks for the advice so far! I'm a fairly regular traveller within the US (lots of business trips to Orlando) so I'm well aware of the TSA rules and guidelines. I never check any of my medical supplies (although I do put an extra stash of enzymes and albuterol in my checked stuff) and always...