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Exon Deletion 52

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Latest Activity: Feb 20, 2020

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Comment by Holly Cahoon on August 6, 2009 at 2:30pm
Good Luck, let me know how it goes for Andrew. I would be interested in having my son join the trial group, if they still needed anyone and it hasn't already started of course.
Comment by jennifer renshaw on July 14, 2009 at 12:50pm
It is awsome. The trial has not started yet. We are waiting to hear about dates. I believe that they do need more patients. Andrew will not benefit from this in the short term, but long term possibilities could be amazing. Take care and God bless you and yours.
Comment by Holly Cahoon on July 14, 2009 at 11:55am
That's awesome! Hopefully Andrew will benefit from this. Do you know if they need more patients for the trial? Has the trail already started? Good Luck and God Bless.
Comment by jennifer renshaw on April 21, 2009 at 9:22am
Well we are in the process of gaining information about a clinical trial that is on going at The Research Institute at Nationwide Childrens Hospital/Columbus Ohio. Doctor is Dr. Jerry Mendell(jerry.mendell@nationwidechildres.org). Clinical Research Coordinator is Laurence Viollet(laurence.viollet@nationwidechildres.org). The inclusion criteria: deletion of exon 52 and must be over age 5. They are looking for 3 patients for trial to begin in the summer. The trial will consist of injection of small foot muscle, and biopsy of site 6 weeks later. The study will take 2 years, but patients will only need to be seen during the first 2 months. The results of this trial are necessary for FDA approval of vascular delivery in the future. That's all I know for now. Once I find out what the biopsy consists of, we may be taking a trip to Columbus. Andrew, who is 14, is all about this, as he understands what it could mean for the future.
Comment by jennifer renshaw on April 4, 2009 at 2:41pm
I am not sure of all the details yet. When I find out I would be happy to let you know. Have a safe trip.
Comment by jennifer renshaw on April 4, 2009 at 12:24pm
My son also has deletion 52. There is a trial at Ohio State that targets 52. My son may become part of that trial. We will see.
Comment by Holly Cahoon on January 28, 2009 at 6:43pm
My son has deletion 52. Wondering what other mother's sons have the same deletion and what research has been made with Exon skipping for this deletion.
 

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