Any news regarding PTC124?

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
<br />mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
mom to Maci W1282X and DF508

 

[hopefullmom]

I am writing to you all to tell you I got a call from the national foundation last week on ptc124 and they have used all there funding for the drug, and need people raising money so this drug can stay in trial. I was devastated. I know that if we raise money we can fund this drug directly. I have a child that this could possibly help.
<br />mom to Maci W1282X and DF508

 

[Diane]

Thats not exactly the news i wanted to hear. If you have any ideas on how to raise the money please let me know, i'll do what i can.

 

[Diane]

Thats not exactly the news i wanted to hear. If you have any ideas on how to raise the money please let me know, i'll do what i can.

 

[Diane]

Thats not exactly the news i wanted to hear. If you have any ideas on how to raise the money please let me know, i'll do what i can.

 

[Diane]

Thats not exactly the news i wanted to hear. If you have any ideas on how to raise the money please let me know, i'll do what i can.

 

[Diane]

Thats not exactly the news i wanted to hear. If you have any ideas on how to raise the money please let me know, i'll do what i can.

 

[princessjdc]

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

We asked our doctor about it when we were in clinic. She was very vague and then told us to be careful of things you read on the internet.



QUOTE "you wouldn't believe some of the things that my patients find in CF chat rooms. She said those people are very bitter. You can read all kinds of crazy stuff". hmmmm



Honestly- if I didn't come here, I wouldn't know much. Are the docs just being cautious?</end quote></div>

When I asked my doc about PTC 124 he didnt sound too enthused about the drug. Heres my thought when it comes out I will diffantly make sure Im on it whether or not my doc thinks much of it or not. But I hope that they are able to continue to fund PTC 124 cause I think I will benefit from it greatly both my mutations is G542X. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[princessjdc]

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

We asked our doctor about it when we were in clinic. She was very vague and then told us to be careful of things you read on the internet.



QUOTE "you wouldn't believe some of the things that my patients find in CF chat rooms. She said those people are very bitter. You can read all kinds of crazy stuff". hmmmm



Honestly- if I didn't come here, I wouldn't know much. Are the docs just being cautious?</end quote></div>

When I asked my doc about PTC 124 he didnt sound too enthused about the drug. Heres my thought when it comes out I will diffantly make sure Im on it whether or not my doc thinks much of it or not. But I hope that they are able to continue to fund PTC 124 cause I think I will benefit from it greatly both my mutations is G542X. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[princessjdc]

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

We asked our doctor about it when we were in clinic. She was very vague and then told us to be careful of things you read on the internet.



QUOTE "you wouldn't believe some of the things that my patients find in CF chat rooms. She said those people are very bitter. You can read all kinds of crazy stuff". hmmmm



Honestly- if I didn't come here, I wouldn't know much. Are the docs just being cautious?</end quote></div>

When I asked my doc about PTC 124 he didnt sound too enthused about the drug. Heres my thought when it comes out I will diffantly make sure Im on it whether or not my doc thinks much of it or not. But I hope that they are able to continue to fund PTC 124 cause I think I will benefit from it greatly both my mutations is G542X. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[princessjdc]

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

We asked our doctor about it when we were in clinic. She was very vague and then told us to be careful of things you read on the internet.



QUOTE "you wouldn't believe some of the things that my patients find in CF chat rooms. She said those people are very bitter. You can read all kinds of crazy stuff". hmmmm



Honestly- if I didn't come here, I wouldn't know much. Are the docs just being cautious?</end quote>

When I asked my doc about PTC 124 he didnt sound too enthused about the drug. Heres my thought when it comes out I will diffantly make sure Im on it whether or not my doc thinks much of it or not. But I hope that they are able to continue to fund PTC 124 cause I think I will benefit from it greatly both my mutations is G542X. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[princessjdc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
<br />
<br />We asked our doctor about it when we were in clinic. She was very vague and then told us to be careful of things you read on the internet.
<br />
<br />
<br />
<br />QUOTE "you wouldn't believe some of the things that my patients find in CF chat rooms. She said those people are very bitter. You can read all kinds of crazy stuff". hmmmm
<br />
<br />
<br />
<br />Honestly- if I didn't come here, I wouldn't know much. Are the docs just being cautious?</end quote>
<br />
<br />When I asked my doc about PTC 124 he didnt sound too enthused about the drug. Heres my thought when it comes out I will diffantly make sure Im on it whether or not my doc thinks much of it or not. But I hope that they are able to continue to fund PTC 124 cause I think I will benefit from it greatly both my mutations is G542X. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />