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Exon Deletion 52

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Latest Activity: Jan 24, 2015

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Comment by Kristin Linke on August 29, 2013 at 10:11am

I know, I wish more people would be more active on this site. I could use more emotional support. We are all going through or will go through similar issues. Sorry to hear that you have not heard back from the Ohio study. Gavin is going to CHOP for an MRI Study. I don't want to do medical trials yet. I have not put him on Steroids yet. The side affects are worse than what the boys are going through. The side effects are not worth an extra year of them walking. We choose quality of life. We know that eventually we will have to put them on meds, but not yet.

Comment by Holly Cahoon on August 28, 2013 at 9:54pm
I feel horrible, haven't been on this website in forever. We really didn't hear much from our study in Ohio.
Comment by jenn on July 14, 2010 at 8:33am
holly, when in august? we have a tentative aug 8th and 9th in hosital for the actual injection, 12th and 16th for apointments, we will be staying from the 8th trhough the 16th. love to meet u if you are there then. cori, they give you any option you want as far as travel, you can fly back and forth or stay the whole time. they seem very interested in being accomidating to each family
Comment by Cori on July 13, 2010 at 9:23pm
Awesomeness ladies, I guess Jenn you would be the one to potentially know since Austin is getting ready to start are they making you stay there for the full 14 weeks or are they allowing you to go back and forth...this could make school a little difficult, but regardless we will take it =) At least we are moving somewhere with all this advances!!!!
Comment by Holly Cahoon on July 13, 2010 at 9:12pm
My son is going in August, I'm so ecxited for him to be able to be part of this trial. We live in Utah and so thankful they pay for the traveling and lodging. Keeping my fingers crossed for all of us. :)
Comment by jenn on July 13, 2010 at 7:55pm
cori, max, my 8 year old is "signed up' for this as well,...just found out today that austin (11) will be begining the non ambulatory prosensa in columbus july 29th. yes, they do pay for travel, lodging, and food, for two parents and the child. we may be spending lots of time in ohio this year, luckily my father lives there! keep me posted on your progress, or if you hear anything
Comment by Cori on July 13, 2010 at 4:35pm
Jenn, we have our son Trey signed up for the Ambulatory 51 skipping with AVI...we have been in contact with them over that way and they said that they were in the process and just recently followed up with us regarding whether Trey was still ambulatory, heart conditions, blood pressure, steroids, etc, not the basic stuff like just needing the genetic report which is exciting, they said they were delayed and I have no clue how this clinical thing works (do they help with transportation, etc we live in Cali) but we have Trey's information in their hands and just waiting, waiting, waiting... Excited for your son! Cori
Comment by jenn on July 11, 2010 at 6:31pm
its been a while since anyone commented, but big things could be happening for those with an exon 52 deletion...any non ambulatory boys scheduled to head to columbus for the 51 skipping trial of prosensa? my oldest boy austin is supposed to , they say august! also the AVI was quite delayed but rumored to begin october...ambulatory, in columbus, phase 1b/2. interested if anyone else is headed that way!
Comment by Cori on November 23, 2009 at 2:26am
We have...we are waiting to get into the Duchenne Clinic here at Rani Children's Hospital, but we are definitely thinking about it...I'll let you know all the details (side effects, etc) they pass onto us when we get more details.
Comment by jenn on November 21, 2009 at 8:52pm
is anyone thinking about the nationwide childrens hospital avi biopharm trial of exon 51 skipping? both my boys have a deletion of 52, and we have been talking back and forth with the trial coordinator. the trial is scheduled to begin in march, if it gets final approval.
 

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