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    New trial with Kalydeco and splicing/residual function mutations

    Hey Guys! I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug.... From the researcher doing the trial: People can call Connie St. Clair directly at 303-270-2517. It really is open to people from around the...
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    Ivacaftor and splicing mutations..

    They are the only place doing the trial. Call Connie!
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    Ivacaftor and splicing mutations..

    Hey Guys! I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug.... From the researcher doing the trial: People can call Connie St. Clair directly at 303-270-2517. It really is open to people from around the...
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    Fecal elastase test

    Hi all~ About to get a fecal elastase test and was wanting to compare notes on results and mutations. I'm PI (5 creon with meals and CFRD) <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks!
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    Intravenous Ozone has greatly helped my sinusitis

    Well, of course, I have to chime in!! Anything alternative... I have had 12 IV ozone (autohemotherapy) in the last 8 weeks, piggy backed with UVA/UVB blood irradiation, follwed by high powered pemf (pulsed electromagnetic field therapy). It works... I had great success with all of this and will...
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    Rallying the troops.... we need to get together on this

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyrilCrodius</b></i> Wait, are you the one with Df508/621+1G->T who tried Kalydeco?</end quote> yes <img src="i/expressions/face-icon-small-smile.gif" border="0">
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    new, pls help

    Cheri~ Take him to the University of Colorado emergency room immediately... That is where National Jewish national Jewish admits CF patients. By going to their ER, you will see a CF doctor from National Jewish there... It sounds emergent to me and if I were in your shoes, I wouldn't hesitate to go..
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    new, pls help

    Cheri~ Take him to the University of Colorado emergency room immediately... That is where National Jewish national Jewish admits CF patients. By going to their ER, you will see a CF doctor from National Jewish there... It sounds emergent to me and if I were in your shoes, I wouldn't hesitate to go..
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    Rallying the troops.... we need to get together on this

    Here is one way to easily email your Representatives regarding this legislation:<a href="http://www.opencongress.org/contact_congress_letters/new?bill=112-s2236&position=support" rel="nofollow nofollow"...
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    Rallying the troops.... we need to get together on this

    Here is one way to easily email your Representatives regarding this legislation:<a href="http://www.opencongress.org/contact_congress_letters/new?bill=112-s2236&position=support" rel="nofollow nofollow"...
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    Rallying the troops.... we need to get together on this

    Hi everyone~ I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II...
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    Rallying the troops.... we need to get together on this

    Hi everyone~ I have some crazy news that I think we all need to be aware of as we go forward in our agreement to take the vertex drugs. I had become increasingly concerned about CFers getting sick and experiencing more exacerbations as the vertex drugs were being discontinued after Phase II...
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    Do You Travel to a CF Center in Another State to Get Good Care?

    I live in Dallas and have been going to National Jewish for 6 years. I would never go to any other clinic. ever. I had HORRIBLE experiences with the Dallas clinic (the nurses were HORRIBLE at getting back to you (3 days for a hemoptysis issue,) I sat in the hospital at UT SOUTHWESTERN with a...
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    Do You Travel to a CF Center in Another State to Get Good Care?

    I live in Dallas and have been going to National Jewish for 6 years. I would never go to any other clinic. ever. I had HORRIBLE experiences with the Dallas clinic (the nurses were HORRIBLE at getting back to you (3 days for a hemoptysis issue,) I sat in the hospital at UT SOUTHWESTERN with a...
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    link for additional info on more mutations that may benefit from Ivacaftor

    This shows what I have been anticipating <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are going to be our own individual studies... study in a box!!! brilliant!!! Thank you Vertex.
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    link for additional info on more mutations that may benefit from Ivacaftor

    This shows what I have been anticipating <img src="i/expressions/face-icon-small-smile.gif" border="0"> We are going to be our own individual studies... study in a box!!! brilliant!!! Thank you Vertex.
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    If you don't have a gating mutation and want Kalydeco....

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature...
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    If you don't have a gating mutation and want Kalydeco....

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jmiller</b></i> Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature...
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    If you don't have a gating mutation and want Kalydeco....

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY...
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    If you don't have a gating mutation and want Kalydeco....

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> If you don't have a gating mutation and want Kalydeco you better push your doctors NOW before 2nd quarter of 2012. I just spoke with a pharmasist at one of the pharmacies that fills Kalydeco, they are FULLY...
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