PPMD Community

General Discussion (319)

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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 Reply by ANTONINO ENEIDE
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… Started by ANTONINO ENEIDE	0	Mar 31, 2017