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Scientific Update Meeting (CFF)

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beleache

New member
Hey All, <div><br></div><div> I went to the Scientific Meeting tonight..  I was so excited to meet our very own Emily Schailer & she did not disappoint !!  She really does rock !!  I saw Piper, she really is a special person & I am honored to know her.  </div><div><br></div><div> I got to see the ladies from the CFF that I knew when I did the suffolk county great strides walk .. </div><div><br></div><div> Pipers Dad was one of the speakers, besides Emily (she was great)  & Dr Bruce Marshall..  </div><div><br></div><div> The big surprise was Diana Williams from ABC news. She spoke to us & was part of the entire evening .. </div><div><br></div><div> The topic was mainly about VX-770/ VX- 809..  I have to say that it all sounded very promising <img src="i/expressions/face-icon-small-smile.gif" border="0">   I also got to sit w/ my Clinic team <img src="i/expressions/face-icon-small-smile.gif" border="0">  that was fun..</div><div><br></div><div><3  joni</div>
 
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beleache

New member
Hey All,<br>I went to the Scientific Meeting tonight.. I was so excited to meet our very own Emily Schailer & she did not disappoint !! She really does rock !! I saw Piper, she really is a special person & I am honored to know her. <br>I got to see the ladies from the CFF that I knew when I did the suffolk county great strides walk ..<br>Pipers Dad was one of the speakers, besides Emily (she was great) & Dr Bruce Marshall.. <br>The big surprise was Diana Williams from ABC news. She spoke to us & was part of the entire evening ..<br>The topic was mainly about VX-770/ VX- 809.. I have to say that it all sounded very promising <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also got to sit w/ my Clinic team <img src="i/expressions/face-icon-small-smile.gif" border="0"> that was fun..<br><3 joni
 
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beleache

New member
Hey All,<br>I went to the Scientific Meeting tonight.. I was so excited to meet our very own Emily Schailer & she did not disappoint !! She really does rock !! I saw Piper, she really is a special person & I am honored to know her. <br>I got to see the ladies from the CFF that I knew when I did the suffolk county great strides walk ..<br>Pipers Dad was one of the speakers, besides Emily (she was great) & Dr Bruce Marshall.. <br>The big surprise was Diana Williams from ABC news. She spoke to us & was part of the entire evening ..<br>The topic was mainly about VX-770/ VX- 809.. I have to say that it all sounded very promising <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also got to sit w/ my Clinic team <img src="i/expressions/face-icon-small-smile.gif" border="0"> that was fun..<br><3 joni
 
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chrissyd

New member
That's great! Thank you for passing this on! I have thought about going to confrences and things but I've never actually done it.
 
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chrissyd

New member
That's great! Thank you for passing this on! I have thought about going to confrences and things but I've never actually done it.
 
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chrissyd

New member
That's great! Thank you for passing this on! I have thought about going to confrences and things but I've never actually done it.
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JENNYC

New member
Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.

What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!
 
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JENNYC

New member
Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.

What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!
 
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JENNYC

New member
Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.
<br />
<br />What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!
 
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lifeisgood729

Guest
I meant to go to this conference, but I couldn't drag myself to Manhattan from Suffolk County last night. I was hoping to find someone online who had attended and could share what was learned. <br><br>Martha<br>43 w/CF, mom to 3, no CF <br>
 
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lifeisgood729

Guest
I meant to go to this conference, but I couldn't drag myself to Manhattan from Suffolk County last night. I was hoping to find someone online who had attended and could share what was learned. <br><br>Martha<br>43 w/CF, mom to 3, no CF <br>
 
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lifeisgood729

Guest
I meant to go to this conference, but I couldn't drag myself to Manhattan from Suffolk County last night. I was hoping to find someone online who had attended and could share what was learned. <br><br>Martha<br>43 w/CF, mom to 3, no CF <br>
 
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beleache

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i>

Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.



What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!</end quote></div>  <div><br></div><div>Hi Jenny,, </div><div><br></div><div> You can go on CFF.org to get info about the drug.. </div><div><br></div><div> This is a summary of what the letter stated : </div><div><br></div><div> The drugs are oral, they CFTR, a faulty gene & its protein product that is the underlying cause of cf. The drugs are in the late stage of clinical trials ! It targets adults & children with the G551D mutation, those taking the drug showed a profound improvements, especially in lung function & weight gain.... They are also in phase 2 study using a combination of the two drugs targeting the most common mutation Delta F508 !</div><div><br></div><div> Emily Schailer testified to the results & her testimony brought so much hope to all in attendance ..  She said she hasn't had any side effects from the medication ..  She feels wonderful !!  </div><div><br></div><div>  <img src="i/expressions/face-icon-small-smile.gif" border="0">  joni</div>
 
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beleache

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i>

Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.



What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!</end quote> <br>Hi Jenny,,<br>You can go on CFF.org to get info about the drug..<br>This is a summary of what the letter stated :<br>The drugs are oral, they CFTR, a faulty gene & its protein product that is the underlying cause of cf. The drugs are in the late stage of clinical trials ! It targets adults & children with the G551D mutation, those taking the drug showed a profound improvements, especially in lung function & weight gain.... They are also in phase 2 study using a combination of the two drugs targeting the most common mutation Delta F508 !<br>Emily Schailer testified to the results & her testimony brought so much hope to all in attendance .. She said she hasn't had any side effects from the medication .. She feels wonderful !! <br><img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
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beleache

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i>

Would you mind telling us a little bit more about what they told you about the vx770 & vx809? I am so interested in finding out how it is going.



What a spectacular opportunity sounds like it must have been a blast! And isn't it wonderful to have a clinic team that you love!!</end quote> <br>Hi Jenny,,<br>You can go on CFF.org to get info about the drug..<br>This is a summary of what the letter stated :<br>The drugs are oral, they CFTR, a faulty gene & its protein product that is the underlying cause of cf. The drugs are in the late stage of clinical trials ! It targets adults & children with the G551D mutation, those taking the drug showed a profound improvements, especially in lung function & weight gain.... They are also in phase 2 study using a combination of the two drugs targeting the most common mutation Delta F508 !<br>Emily Schailer testified to the results & her testimony brought so much hope to all in attendance .. She said she hasn't had any side effects from the medication .. She feels wonderful !! <br><img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
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JENNYC

New member
Thank you so much! I will check it out! That would be a prayer answered! Thanks so much for sharing with us. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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JENNYC

New member
Thank you so much! I will check it out! That would be a prayer answered! Thanks so much for sharing with us. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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