Children doing the PTC 124 trial

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badcheesemomma

New member
Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me, and i am wondering if anyone has first hand experience with it. My daughter already has so much on her plate, i hate to tie her down with more, yet it sounds so promising!
Also, we are currently in the process of switching clinics. I am wondering if anyone could recommend doctors at either CHOP or the Danville Giesinger CF clinic? We have consultations with both in the next week. Thanks alot!
 
B

badcheesemomma

New member
Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me, and i am wondering if anyone has first hand experience with it. My daughter already has so much on her plate, i hate to tie her down with more, yet it sounds so promising!
Also, we are currently in the process of switching clinics. I am wondering if anyone could recommend doctors at either CHOP or the Danville Giesinger CF clinic? We have consultations with both in the next week. Thanks alot!
 
B

badcheesemomma

New member
Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me, and i am wondering if anyone has first hand experience with it. My daughter already has so much on her plate, i hate to tie her down with more, yet it sounds so promising!
<br />Also, we are currently in the process of switching clinics. I am wondering if anyone could recommend doctors at either CHOP or the Danville Giesinger CF clinic? We have consultations with both in the next week. Thanks alot!
 
D

dlo2977

New member
My daughter is too young for the trial but does have a nonsense mutation so i will be keeping up with it! Keep in touch, especially if your daughter does it. I would love to hear all about it. Find me on FB if you are on there. facebook.com/dana.fehr
 
D

dlo2977

New member
My daughter is too young for the trial but does have a nonsense mutation so i will be keeping up with it! Keep in touch, especially if your daughter does it. I would love to hear all about it. Find me on FB if you are on there. facebook.com/dana.fehr
 
D

dlo2977

New member
My daughter is too young for the trial but does have a nonsense mutation so i will be keeping up with it! Keep in touch, especially if your daughter does it. I would love to hear all about it. Find me on FB if you are on there. facebook.com/dana.fehr
 
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