General Discussion (316)

Discussions Replies Latest Activity

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

Bright minds team up to battle muscular dystrophy

Recent Boston ABC news Bright minds team up to battle muscular dystrophy Inspirational team looks for cure for devastating disease http://…

Started by Prasad Surampudi

0 Jun 16, 2016


Hello everyone! I am excited to join you all in the PPMD community. Forgive me if I'm not writing this in the correct area. I'm new and lea…

Started by Brandi Cammarata

3 Apr 16, 2016
Reply by Nida Zuberi

Deflazcort retailers

Is anybody using someone other than Masters Marketing in the UK to get their Deflazacort prescription filled?   Thinking about trying someo…

Started by Keith Van Houten

6 Mar 15, 2016
Reply by NancyC


Hi friends Is there anybody participating in BMS trials.. Please share your experiences and views as I am planning to participate in the sa…

Started by Shelly

1 Mar 1, 2016
Reply by Rahul Deshpande

For anyone interested in prayer.

My name is Andrea, and my husband, Shawn, and I have two sons, one with Duchenne. We are followers of Jesus - Christians - and though we qu…

Started by Shawn

15 Jan 12, 2016
Reply by Shawn

Petition in support of Drisapersen and thus other drugs to fight DMD https://www.cha

Started by Andrea Cleary

4 Jan 7, 2016
Reply by Andrea Cleary


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



© 2019   Created by PPMD.   Powered by

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