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General Discussion (313)

Discussions Replies Latest Activity

Large in frame deletion of exon 3 to 29

Hello everyone. I am new to this site and hoping for some insight from fellow parents with children who have large in frame deletions. My s…

Started by Shaynee Ferguson

7 Apr 13

Duchenne deletion 8-18

Hello everybody, my nephew is just 1 years old and has been very recently diagnosied with a Duchenne deletion exon from 8 to eighteen. He s…


0 Mar 31

Weight loss

Its been a while, but Im looking for advice from others experiences in regards to medications to give weight loss.  William is now 11.5 an…

Started by Jonathan

1 Feb 8
Reply by Sampreet

Beckers Type MD

Is the new drug - Eteplirsen - also approved for Becker's Type MD?

Started by Terry Ann Attaway

2 Oct 12, 2016
Reply by Nadja

Is there a specific bed or mattess that is recommended to help with sleep

Does anyone recommend a specific bed or mattress to help my son sleep? We are having to turn him over at least six times per night, he is 1…

Started by Johnny

2 Sep 7, 2016
Reply by Michelle Scaglione

Does the state of Florida and Tennessee offer acceptable assistance for Duchenne patients?

I am looking at a possible move to Florida (or Tennessee) from Ohio. My son is 16 and has Duchenne MD. We want to keep him in Ohio till hig…

Started by ana das

0 Sep 6, 2016

Trying to reach out to parents in Louisiana:)

Hi, Im looking for parents to touch base with in Louisiana. My son is 9 years old and was diagnosed at 3. We were pretty much given the dia…

Started by Brandy Sonnier

2 Aug 1, 2016
Reply by Brandy Sonnier

Help getting referral from Southern CA Insurance Kaiser Permanente to Center for DMD at UCLA

We live close to the Center for DMD at UCLA and want to get referral to have our son treated there. We have the HMO insurance provider Kais…

Started by Chris

0 Jul 29, 2016

Spinal Fusion Surgery Refusal

Greetings to all; I hope everyone's day is going well. We just found out our son, Ben, needs spinal fusion surgery, and I dread the though…

Started by Brett Narmore

8 Jul 19, 2016
Reply by Brett Narmore


My son is 14,  and his docs at Scottish Rite Hospital think he needs the spinal fusion surgery for his scoliosis.  I am terrified about the…

Started by Joy Narmore

0 Jul 8, 2016


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