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Latest Activity: Jun 22, 2016

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Comment by Ana on May 10, 2016 at 1:56pm

Still Here

Comment by Katherine Blake on May 10, 2016 at 11:30am

He's 12.  Just sent request.  

Comment by Marilyn Ash on May 10, 2016 at 11:27am
Friend me on Facebook and I can add you. I like Duchenne Under Ten, DMD moms, and DMD Army. There's another one that I like but I can't recall the title. It's really long. How old is your son?
Comment by Katherine Blake on May 10, 2016 at 11:23am

Marilyn Ash - what FB groups are you in?  I am only just getting involved on FB and am behind the curve.  

Comment by Marilyn Ash on May 10, 2016 at 11:13am
I'm still here, too. I usually participate more on the Facebook groups. It's been a year since dx and it still seems like we just got the phone call yesterday. Any Dup2 kiddos out there?
Comment by Katherine Blake on May 10, 2016 at 11:04am

Still here...still plugging away.  You aren't alone.  I don't comment much because sometimes it's hard.  But, still here.  :)  

Comment by Cathy Johnson on May 10, 2016 at 11:01am

Just checking in to see how many of you are still out there.  Duchenne is a lonely place and we are such a small group.

Comment by dietf on March 7, 2016 at 2:43am
A re-comment after two years. My sons are 8.5 and 6. Now our elder boy has problems with his legs. He has gower's sign. We have duplication on exon 39 and still don't have muscle biopsy. Does anyone have knowledge about utrophin drug smt c1100. Will it be a cure for us?
Comment by Jo-Anne on January 8, 2016 at 7:54am

My son Kevin is turning 19 next month and has a duplication on 62 or 63?

Comment by Marilyn Ash on May 19, 2015 at 10:38am

Hi!  My son is 3 and was just diagnosed with DMD.  He has a duplication of exon 2.  He is still walking and not showing any signs/symptoms.  Thankfully!  My brother had DMD and so I pushed for testing recently.  Our Genetic therapist told me that it's a milder and common form of DMD.  Is that true?  My brother had the same mutation and lived until he was 35 without any support/intervention. I'm still in shock trying to find the strength to keep fighting!  It's so hard to live through it all over again.  A lot of open wounds and fresh ones too :( 


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