PTC124

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hopefullmom

New member
I am also keeping up with everything that is going on with the PTC124 study, my daughter is 4 and will turn 5 in July, we go to the clinic in Houston, but I keep in contact with all the researchers in Alabama, theywill be going to a conference within the next week, and if at all possible Maci will get to be in the study. YEA!! She has W1282X and DF508. I believe they have already started on children in Europe. Let me know if you all know anything else. Thanks
 
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rarab43

Guest
Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan
 
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rarab43

Guest
Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan
 
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rarab43

Guest
Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan
 
R

Rebjane

Super Moderator
Hopefulmom,

My daughter has the same mutations as well. She is dF508 and W1282X. Keep us posted as to how things go with this study. Sounds like interesting stuff.
 
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Rebjane

Super Moderator
Hopefulmom,

My daughter has the same mutations as well. She is dF508 and W1282X. Keep us posted as to how things go with this study. Sounds like interesting stuff.
 
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Rebjane

Super Moderator
Hopefulmom,

My daughter has the same mutations as well. She is dF508 and W1282X. Keep us posted as to how things go with this study. Sounds like interesting stuff.
 
A

AnD

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hi from Tuscaloosa- do you go to UAB? We just switched there from Childrens. Susan</end quote></div>


Yep. From the start up of the adult clinic <img src=""> . I live about 20 min. north of UAB, in Gardendale, and have lived in the B'ham area since I was 6 yrs. old <img src=""> .
 
A

AnD

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hi from Tuscaloosa- do you go to UAB? We just switched there from Childrens. Susan</end quote></div>


Yep. From the start up of the adult clinic <img src=""> . I live about 20 min. north of UAB, in Gardendale, and have lived in the B'ham area since I was 6 yrs. old <img src=""> .
 
A

AnD

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hi from Tuscaloosa- do you go to UAB? We just switched there from Childrens. Susan</end quote></div>


Yep. From the start up of the adult clinic <img src=""> . I live about 20 min. north of UAB, in Gardendale, and have lived in the B'ham area since I was 6 yrs. old <img src=""> .
 
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henryb

New member
Hi there,
I am a father of two daughters with CF (18 and 21 yo).
We live in Austria, Europe.
My daughters' mutations are DF508 + R1162X (a stop or nonsense mutation).
I am closely watching the PTC124 study as well!
Is there anyone out there with the same nonsense mutation?
Thanks and best to you,
Henry
 
H

henryb

New member
Hi there,
I am a father of two daughters with CF (18 and 21 yo).
We live in Austria, Europe.
My daughters' mutations are DF508 + R1162X (a stop or nonsense mutation).
I am closely watching the PTC124 study as well!
Is there anyone out there with the same nonsense mutation?
Thanks and best to you,
Henry
 
H

henryb

New member
Hi there,
I am a father of two daughters with CF (18 and 21 yo).
We live in Austria, Europe.
My daughters' mutations are DF508 + R1162X (a stop or nonsense mutation).
I am closely watching the PTC124 study as well!
Is there anyone out there with the same nonsense mutation?
Thanks and best to you,
Henry
 
S

Scarlett81

New member
does anyone know what effects/improvements you start to see early on when you take the drug? and how do you take it-pill, shot or inhaled?
 
S

Scarlett81

New member
does anyone know what effects/improvements you start to see early on when you take the drug? and how do you take it-pill, shot or inhaled?
 
S

Scarlett81

New member
does anyone know what effects/improvements you start to see early on when you take the drug? and how do you take it-pill, shot or inhaled?
 
H

hopefullmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan</end quote></div>


Hi Susan, I have spoke with Dr Clancy and I can't wait to meet him, the first time I called he came to the phone to speak with me, and that was so incouraging to know a doctor actually takes the time to speak with the parents. How old is Will? Was he in the trial before. I am trying to attach a picture of Maci, I hope it works!!!! My e-mail is cmddrewry@yahoo.com!!!
 
H

hopefullmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan</end quote></div>


Hi Susan, I have spoke with Dr Clancy and I can't wait to meet him, the first time I called he came to the phone to speak with me, and that was so incouraging to know a doctor actually takes the time to speak with the parents. How old is Will? Was he in the trial before. I am trying to attach a picture of Maci, I hope it works!!!! My e-mail is cmddrewry@yahoo.com!!!
 
H

hopefullmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rarab43</b></i>

Hopeful- will you be traveling to Birmingham? Let me know if yall enroll since Im sure we will be too. They talked to Will at his last visit to see if he wanted to be in this next phase also and he said yes. It is very exciting. I love the people in charge of the program in Birmingham- Dr Clancy is wonderful and Heather is also. Keep in touch. Susan</end quote></div>


Hi Susan, I have spoke with Dr Clancy and I can't wait to meet him, the first time I called he came to the phone to speak with me, and that was so incouraging to know a doctor actually takes the time to speak with the parents. How old is Will? Was he in the trial before. I am trying to attach a picture of Maci, I hope it works!!!! My e-mail is cmddrewry@yahoo.com!!!
 
D

Dreamer

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

Hi there,

I am a father of two daughters with CF (18 and 21 yo).

We live in Austria, Europe.

My daughters' mutations are DF508 + R1162X (a stop or nonsense mutation).

I am closely watching the PTC124 study as well!

Is there anyone out there with the same nonsense mutation?

Thanks and best to you,

Henry</end quote></div>



Hey Henry! I have the same mutations as your daughters. I will be 21 at the end of April. I sent you a private message!
 
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