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Newly Diagnosed

Our son went into the hospital in February with a severe case of pneumonia. Saturday, he was running around like a normal kid, Sunday he st…

Started by Chad CampbellLatest Reply

How did you talk to your son about DMD?

My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could…

Started by Claire DiemlerLatest Reply

Gonadal Mosaic

Hey there not sure if anyone knows much about Gonadal Mosaic but that's what the geneticist told me I have meaning that some of my eggs hav…

Started by Betty-Anne HeftLatest Reply

Discussions Replies Latest Activity

Brenda Wong Leaving CMC

Brenda Wong will be leaving Cincinati Medical Center. i got schoked knowing this news. she is great doctor i came across and felt my son is…

Started by ven

1 on Thursday
Reply by Robin Taylor

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
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

IV port for exon 51

Has anyone gotten IV port in the chest for Exondys 51 weekly infusion? how was the procedure? were there any issues after the surgery?

Started by Kirubha Balakumar

3 Jul 4, 2017
Reply by Kirubha Balakumar

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

Calorie needs

How can we estimate the calorie needs of a nearly non-ambulant child who is 16 Years old.I have been trying to find information about the o…

Started by Sampreet

0 Apr 26, 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


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