General Discussion (315)

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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

scoliosis

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

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

BMS ANTIMYOSTATIN TRIALS

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

http://www.king5.com/story/news/local/2015/12/27/family-waits-for-approval-of-drug-that-they-say-saved-boys-life/77957814/ https://www.cha

Started by Andrea Cleary

4 Jan 7, 2016
Reply by Andrea Cleary

Variety of emotions

My son was recently diagnosed with DMD.   Had a conversation with a genetic counselor.  Wanted to get more specific info regarding his test…

Started by Jay Griffin

1 Dec 18, 2015
Reply by Andrea Cleary

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 Campbell

16 Dec 17, 2015
Reply by Kara

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