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Exon Deletion 3-7

Connect with other families with exon deletion 3-7.

Website: http://www.frontstep.us/Delong/mda.htm
Location: Derry, New Hampshire (You are Welcome to Visit)
Members: 28
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Daughters of Carrier Moms

Started by Colin McKenzie. Last reply by Colin McKenzie Jun 13, 2011. 2 Replies

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Comment by Donna Taylor on September 13, 2011 at 9:06pm

Hi David,

Thanks so much for posting.  I had not seen that report yet but it definitely agrees with what we have seen.  Jordan may even be a part of those numbers since he is a patient of Dr. Wong, I'm not sure.  We will see her in 2 weeks.  He is still walking very well at age 16 and we do not own a wheelchair.

Donna

Comment by David on September 13, 2011 at 6:46pm

Thought this group would be interested in a link I found today. It's an abstract of a study to be presented at World Muscle Society that specifically discusses exon 3-7 deletions.

 

http://www.distrofiamuscular.net/wms11.2.pdf

 

However, seeing that Dr. Wong is lead author perhaps some of you already know about these results.

Comment by Anessa Fehsenfeld on August 23, 2011 at 1:52pm

http://www.avibio.com/our-programs/rare-diseases/duchenne-muscular-...

 

Hi Lisa!  The above link will show you that skipping exon 8 is on AVI Biopharma's list of top ten exons they are planning to skip (scroll to the bottom of the page).  Unfortunately their is not a timeline attached to it.  However, their first two exon skipping trials are underway...we can only hope that their success will move the other exons along faster.

Comment by Alejandra Lagffer on August 21, 2011 at 6:20pm
hello I would like to know if there is an exon skiping if the xon 3 is deleted?
Comment by Lisa Groeger on August 20, 2011 at 2:15pm

Anybody know if there is anything progressing in the research of exon skipping of exon 8.?

 

Comment by Kelly Bruhl on March 9, 2011 at 9:54pm
My July appointment got bumped to October!
Comment by sandy bagley on December 8, 2010 at 9:00am
Hi. Not sure if we belong in this group. My son is 15 and has deletions 3 thru 13. I can't seem to find anyone with 3 thru 13. thanks
Comment by Wendy Bertellotti on August 13, 2010 at 1:25pm
doesn't look like we'll make it out until sept....thank you for letting us know how procedure when for your son:) glad it wasn't bad.
Comment by Kathy on August 13, 2010 at 12:58pm
We just got back from Cinn Children's, Dr Wong was in Singapore for 2 weeks. We had the skin biopsy done and my son didn't feel a thing. It is healing nicely. Dr Collins performed it.
Comment by Eileen DeLong on August 4, 2010 at 3:58pm
Great! We are staying at the Embassy Suites in Blue Ash OH, just an FYI.
 

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