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Profile Information

Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
VA

Bains's Blog

Caught of guard - Questions by Strangers

Posted on December 5, 2008 at 10:11pm 6 Comments

I guess I was not really ready for this. Today I had a stranger approach me and question why I parked in between 2 handicapped parking spaces during school dismissal. I told her that I can do it. (I am thankful to the school for their understanding and offering me that space to be used.) She did not stop there, she explained to me who can use those spaces and that I should not be using. I told her that I have permission from the school to use that space. That did not satisfy her; she continued… Continue

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At 12:28am on March 6, 2014, DEEPAK ARORA said…

DEAR BAINS.,

MY 5+ YEAR OLD SON IS DIAGNOSED DMD (DELETION EXON 52 IDENTIFIED IN DYSTROPHIN GENE), SO IS THERE ANY TREATMENT THROUGH EXON SKIPPING., KINDLY HELP US..!!

At 9:08pm on October 19, 2008, Bains said…
They did not respond to my question on when they are goign to begin clinical trials. I hope they would do clinical trails with dr wong as well. A great team there!!!

Ms. Bain
At 4:14pm on October 19, 2008, Julie Garcia said…
At the PPMD conference in July Santhera was talking about a double blind study and trying to decided with or without steriods.
At 4:13pm on October 19, 2008, Julie Garcia said…
Thanks so much. I will let you know if I find out any more on this with Catena...I wish they would do a clinical trial with Brenda Wong that is controlled to use the information and work with her...that is my thought....
At 11:31am on October 19, 2008, Julie Garcia said…
Hello,

Sorry your positng about CATENA(Idebenone). What is the website for the one Santhera sells?

I appreciate your information. I actually shared a cab ride with Thomas Meier after he presented at the PPMD conference about 6 years ago and this is one that I have been following. Santhera was at this last conference but did not present. They met privately with a group to gather information to help them determine the best way to do their clinical trial.

Take care,

Julie
At 3:53pm on August 13, 2008, Jessica said…
Hi,

You said your son has a deletion of exon 12? How is he doing today? My son is 18months and has an inframe deletion of exon 13. Is your sons' in frame or out.
 
 
 

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