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>
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Scientific Update Meeting (CFF)
- Thread starter beleache
- Start date
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
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
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!!
<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!!
L
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>
L
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>
L
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>
<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>
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>
<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
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
<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
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