General Discussion (319)

Discussions Replies Latest Activity

Emflaza (aka deflazacort) Approvals

Just curious - has anyone in the PPMD community received insurance approval for Emflaza (deflazacort) in the US?  We're currently working t…

Started by Keith & Jill VE

12 Feb 14, 2018
Reply by Keith & Jill VE

Equipment & adaptive technology available

Folks:  My husband, Peter, had Duchenne and died earlier this year at age 33. We live in the greater NYC area.  I have given away much of…

Started by JESSICA Resnick-AULT

0 Oct 20, 2017

Is there a more active forum somewhere?

I notice that there seems to be minimal amounts of communication on this forum. Did members transition to another forum somewhere else or i…

Started by Bruce Ward

2 Oct 5, 2017
Reply by Bruce Ward

Creatine Kinase (CK) Ranges for Becker

I have not been able to find a reference to how high CK can go in Becker.  I wonder if some Becker parents could share their son's serum Cr…

Started by Bruce Ward

0 Sep 28, 2017

Mutation in Exon 12

Hi All, I just want to see if anyone else has Nonsense mutation in Exon 12. Just want to keep touch with all the people with this mutation…

Started by ven

0 Sep 11, 2017

Walking and DMD

Last week my 13 year old son went to camp walking...WALKING. We picked him up and he can't even stand today. I am NOT blaming camp (we LOVE…

Started by Eleanor Carter

0 Jul 2, 2017

Is Melatonin helpful for duchenne boys to have better nights?

Does anyone know of any helpful and safe product that allows the boys to have less disturbed nights?  My son is waking up 3 or 4 times a ni…

Started by Sharon & Dave Holgate

0 Apr 24, 2017

sleeping comfortably

My 14 year old is waking up 3 or 4 times a night.  Does anyone have any advice about beds that make the boys more comfortable?  I have hear…

Started by Sharon & Dave Holgate

0 Apr 24, 2017

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, 2017

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, 2017


Need help using this community site? Visit Ning's Help Page.



© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service