Matt O'Harver
  • Male
  • De Soto, MO
  • United States
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Matt O'Harver's Discussions

PTC 124

Started this discussion. Last reply by Matt O'Harver Jan 13, 2010. 9 Replies

Is anyone currently enrolled in the phase II or phase IIa PTC 124 trial? We are currently finishing the pre-approval process with getting a biopsy next week and then onto the medicine Feb. 1. Looking…Continue

 

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Profile Information

About me:
I'm a 38 year old who by day works at a Car dealership repairing cars, at night I work as a photojournalist for the local newspaper to help make ends meet. We all know the expenses we incur.
About my family:
My wife and I have been married almost 19 years, our son Brandon will be 13 in Feb. and was diagnosed at age 4.
Name(s) of child(ren)/individual(s) with Duchenne:
Brandon
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
De Soto

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Comment Wall (7 comments)

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At 12:14pm on September 15, 2017, Margarita Yashchenko said…

Hello! You must be healthy! 

At 12:16pm on February 8, 2010, Kim King said…
I think the only other thing they mentioned was that it burned when he urinated. I will definitely keep you posted. Glad to hear Brandon is doing well.
At 11:28am on February 8, 2010, Kim King said…
Just checkin in to see how he was tolerating the medication? I heard Troy was experiencing diahrrea but still taking it.
At 6:10pm on January 27, 2010, Kim King said…
I remember when my friend Sheri called me to tell me her son was asked to be in this study, I think I cried all day for them. The DMD community is such an amazing group of people and I pray that there can be a cure for all but for now I pray the trial is a huge sucess! It would be such amazing progress in the treatment of this disease. When TYler was diagnosed steroids were the biggest thing. There is so much hope on the horizon! Please let me know when Brandon starts the trial. I know Troy strarted it last week. I will let you know if I hear anything.
At 8:59pm on January 13, 2010, Kim King said…
No Tyler is not in the trial. He has a duplication so we are hoping and praying for Exon Skipping to hurry along. Our friend Troy is starting it. Today was the biopsy and he is suppposed to start the drug next Tuesday. Are you going to be able to attend the DMD trivia night 2/20/10? Kids are invited and welcome. We'll be there. Hopefully you can make it. Your photographs are beautiful!!!!
At 8:13pm on January 13, 2010, Kim King said…
Matt
So glad to hear Brandon is in the trial. We know someone else who just had their muscle biopsy for it today. We will pray for Brandon and PLEASE let us know how he does on it.
Kim King
At 7:22pm on January 13, 2010, Jennifer Shumsky said…
You ask why would we friend someone we have never met? Because we are all in the same boat and because I was simply drawn in by the great profile picture! Totally awesome! I don't have any information on the PTC 124 trials, but wanted to come over and tell you I loved your picture. I am Jennifer, mom to Xavier, age 8 with DMD deletion 48-52. Our family lives in Shakopee, MN. Nice to Meet you!
 
 
 

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