Ataluren-the drug that "fixes" the CF gene

I

izemmom

New member
Ataluren-the drug that

I just wanted to say that:
a. my daughter shares your mutations (I'm so excited to find someone who has the R553x!!!) except she is f508, not del.

and B. we are from the Milwaukee area, too.

Emily is only 4 and too young for the study, but I'm so excited about Ataluren.

I would like to encourage you to consider being in the study. Every participant brings us closer to Ataluren being a REAL possibility for better health for you, for Emily and for the 10% of Cfers with the nonsense mutations.

I know how you feel about driving into Chicago - I avoid it too, but, if Em were old enough for the study, I'd be driving her there to participate. The train ride is a nice way to go, so check that out. Heck - I'l drive you there a few times if you like! LOL!
 
I

izemmom

New member
Ataluren-the drug that

I just wanted to say that:
a. my daughter shares your mutations (I'm so excited to find someone who has the R553x!!!) except she is f508, not del.

and B. we are from the Milwaukee area, too.

Emily is only 4 and too young for the study, but I'm so excited about Ataluren.

I would like to encourage you to consider being in the study. Every participant brings us closer to Ataluren being a REAL possibility for better health for you, for Emily and for the 10% of Cfers with the nonsense mutations.

I know how you feel about driving into Chicago - I avoid it too, but, if Em were old enough for the study, I'd be driving her there to participate. The train ride is a nice way to go, so check that out. Heck - I'l drive you there a few times if you like! LOL!
 
I

izemmom

New member
Ataluren-the drug that

I just wanted to say that:
a. my daughter shares your mutations (I'm so excited to find someone who has the R553x!!!) except she is f508, not del.

and B. we are from the Milwaukee area, too.

Emily is only 4 and too young for the study, but I'm so excited about Ataluren.

I would like to encourage you to consider being in the study. Every participant brings us closer to Ataluren being a REAL possibility for better health for you, for Emily and for the 10% of Cfers with the nonsense mutations.

I know how you feel about driving into Chicago - I avoid it too, but, if Em were old enough for the study, I'd be driving her there to participate. The train ride is a nice way to go, so check that out. Heck - I'l drive you there a few times if you like! LOL!
 
I

izemmom

New member
Ataluren-the drug that

I just wanted to say that:
a. my daughter shares your mutations (I'm so excited to find someone who has the R553x!!!) except she is f508, not del.

and B. we are from the Milwaukee area, too.

Emily is only 4 and too young for the study, but I'm so excited about Ataluren.

I would like to encourage you to consider being in the study. Every participant brings us closer to Ataluren being a REAL possibility for better health for you, for Emily and for the 10% of Cfers with the nonsense mutations.

I know how you feel about driving into Chicago - I avoid it too, but, if Em were old enough for the study, I'd be driving her there to participate. The train ride is a nice way to go, so check that out. Heck - I'l drive you there a few times if you like! LOL!
 
I

izemmom

New member
Ataluren-the drug that

I just wanted to say that:
<br />a. my daughter shares your mutations (I'm so excited to find someone who has the R553x!!!) except she is f508, not del.
<br />
<br />and B. we are from the Milwaukee area, too.
<br />
<br />Emily is only 4 and too young for the study, but I'm so excited about Ataluren.
<br />
<br />I would like to encourage you to consider being in the study. Every participant brings us closer to Ataluren being a REAL possibility for better health for you, for Emily and for the 10% of Cfers with the nonsense mutations.
<br />
<br />I know how you feel about driving into Chicago - I avoid it too, but, if Em were old enough for the study, I'd be driving her there to participate. The train ride is a nice way to go, so check that out. Heck - I'l drive you there a few times if you like! LOL!
 
J

john81john

New member
Ataluren-the drug that

Hi,

definitely try to participate. I'm in the 770 Phase 3 trial too, same trial as LouLou is in. In my study they are checking and controlling everything, especially first month - blood, pressure, lungs etc... I think 3rd phase is not only about safety , but its more about real effects of the drug on wide range of people...Go for it!
 
J

john81john

New member
Ataluren-the drug that

Hi,

definitely try to participate. I'm in the 770 Phase 3 trial too, same trial as LouLou is in. In my study they are checking and controlling everything, especially first month - blood, pressure, lungs etc... I think 3rd phase is not only about safety , but its more about real effects of the drug on wide range of people...Go for it!
 
J

john81john

New member
Ataluren-the drug that

Hi,

definitely try to participate. I'm in the 770 Phase 3 trial too, same trial as LouLou is in. In my study they are checking and controlling everything, especially first month - blood, pressure, lungs etc... I think 3rd phase is not only about safety , but its more about real effects of the drug on wide range of people...Go for it!
 
J

john81john

New member
Ataluren-the drug that

Hi,

definitely try to participate. I'm in the 770 Phase 3 trial too, same trial as LouLou is in. In my study they are checking and controlling everything, especially first month - blood, pressure, lungs etc... I think 3rd phase is not only about safety , but its more about real effects of the drug on wide range of people...Go for it!
 
J

john81john

New member
Ataluren-the drug that

Hi,
<br />
<br />definitely try to participate. I'm in the 770 Phase 3 trial too, same trial as LouLou is in. In my study they are checking and controlling everything, especially first month - blood, pressure, lungs etc... I think 3rd phase is not only about safety , but its more about real effects of the drug on wide range of people...Go for it!
 
G

Gnome

New member
I really hope this drug is everything I imagine it is. I wonder when it will come to market. I don't live in an area where they are doing trials but my kids would of been ineligible anyway because they are too young. I would of driven hours for a chance of using this drug.
 
G

Gnome

New member
I really hope this drug is everything I imagine it is. I wonder when it will come to market. I don't live in an area where they are doing trials but my kids would of been ineligible anyway because they are too young. I would of driven hours for a chance of using this drug.
 
G

Gnome

New member
I really hope this drug is everything I imagine it is. I wonder when it will come to market. I don't live in an area where they are doing trials but my kids would of been ineligible anyway because they are too young. I would of driven hours for a chance of using this drug.
 
G

Gnome

New member
I really hope this drug is everything I imagine it is. I wonder when it will come to market. I don't live in an area where they are doing trials but my kids would of been ineligible anyway because they are too young. I would of driven hours for a chance of using this drug.
 
G

Gnome

New member
I really hope this drug is everything I imagine it is. I wonder when it will come to market. I don't live in an area where they are doing trials but my kids would of been ineligible anyway because they are too young. I would of driven hours for a chance of using this drug.
 
M

missT

Member
I am starting as soon as my clinic is up and running. I have the W1282x mutation. I am sooooo excited. I know I should not put my eggs in one basket but if it works it can save my life (and others). I have 40-47% FEV so I am praying. I hope I get the drug and will keep everyone up to speed on the progress...or what I can say within limits. If I feel well and normal I will shout it from rooftops!
 
M

missT

Member
I am starting as soon as my clinic is up and running. I have the W1282x mutation. I am sooooo excited. I know I should not put my eggs in one basket but if it works it can save my life (and others). I have 40-47% FEV so I am praying. I hope I get the drug and will keep everyone up to speed on the progress...or what I can say within limits. If I feel well and normal I will shout it from rooftops!
 
M

missT

Member
I am starting as soon as my clinic is up and running. I have the W1282x mutation. I am sooooo excited. I know I should not put my eggs in one basket but if it works it can save my life (and others). I have 40-47% FEV so I am praying. I hope I get the drug and will keep everyone up to speed on the progress...or what I can say within limits. If I feel well and normal I will shout it from rooftops!
 
M

missT

Member
I am starting as soon as my clinic is up and running. I have the W1282x mutation. I am sooooo excited. I know I should not put my eggs in one basket but if it works it can save my life (and others). I have 40-47% FEV so I am praying. I hope I get the drug and will keep everyone up to speed on the progress...or what I can say within limits. If I feel well and normal I will shout it from rooftops!
 
M

missT

Member
I am starting as soon as my clinic is up and running. I have the W1282x mutation. I am sooooo excited. I know I should not put my eggs in one basket but if it works it can save my life (and others). I have 40-47% FEV so I am praying. I hope I get the drug and will keep everyone up to speed on the progress...or what I can say within limits. If I feel well and normal I will shout it from rooftops!
 
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