Please email me if you were just informed that your child is to discontinue the PTC trial due to inadequet data collection.  I believe that most everybody in any of the trials has met at least one other person, if we can compile a list of all involved in the trials it may prove to be very helpfull to have the support of ONE VOICE on this issue. PTC I believe will not abandon our boys.

 

Doug Martz  emeraldoutdoor@att.net  517.750.5296

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jjane1@bellsouth.net
Maria Cutrufelo - mcutrufello@harrahs.com
sarasavalli@yahoo.com
walterssooners@yahoo.com
ferre.fp@wanadoo.fr

Tamara Walters said:
walterssooners@yahoo.com
ciaojs@hotmail.com
I'm so sorry this has been so shocking and difficult. You all are in my thoughts and prayers!
I had two sons enrolled in the study in MPLS

Rita Felling
rafelling@excite.com
mahill78@yahoo.com
This was very disappointing for us as well. Our oldest son, Ryan, was in the double-blind study, then started on the extension about 3 months ago. We didn't see any improvement while he was on the drug, but we thought he might be on the placebo. He is now almost 14 yrs. old. His walking is getting harder all the time (we were told he has BMD). We appreciate all the efforts of our doctor and study coordinator, along with PTC and others involved. We have prayed for our son a lot, and we know that God will continue to give us the strength we need to love and care for him. We hope that valuable insight will be gained by this drug trial and that it will lead to a future treatment.

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