Advocacy (81)

Discussions Replies Latest Activity

Do we need advocacy efforts around the coverage of exon-skipping treatments by insurance plans?

My best research efforts suggest that the cost of AVI or GSK exon-skipping treatments, once approved, would run between 100k - 200k per yea…

Started by David

4 May 18, 2012
Reply by Keith Van Houten

Getting the school district to cover services before kindergarten

My son currently receives PT twice a month through Texas' Early Childhood Intervention program. Since those services end when a child turns…

Started by Veronica E.

5 Nov 9, 2011
Reply by Wyatt's Mommy, Melissa

Federal Budget - FY2011

President Obama released an outline of his proposal for the 2011 fiscal year federal budget today. It includes a $1 billion increase for th…

Started by Keith Van Houten

4 Apr 12, 2011
Reply by Keith Van Houten


Did anyone see the commercial during the NYGIANTS game vs. Redskins? Commercials  featuring Clay Matthews from Green Packers talked about D…

Started by MaryEllen Sicoli

0 Jan 2, 2011

Saving Our Son' story at a time!

If you are a family affected with DMD and would like to be part of the DMD movement and bring Awareness up front, we are looking for 10 mor…

Started by Dee

0 Nov 23, 2010

How much physical therapy is to much for a child with DMD

My child goes to therapy at a learning center on Tuesday's for pt well on the same day he has pt at school. The school is trying to tell me…

Started by Amanda Trosper

18 Nov 20, 2010
Reply by Tim McLaughlin

ataluren what are they doing

hi   it seems that PTC didn't give any dates and planning for the compassionate treatment in naples   we don't have the result of the biops…

Started by ferre

0 Jul 21, 2010

2010 Advocacy Conference

Hello All,If you haven't considered attending PPMD's Advocacy Conference February 21-23 you should.  As many families as possible are neede…

Started by Brian Denger

11 Mar 26, 2010
Reply by Julie Garcia

Chest Pain

Parents, How do you handle when your son tells you he has chest pain? I remained calm but Jared would not talk about it. It lasted for an…

Started by Kari

12 Feb 22, 2010
Reply by carrie

CNN-Darius Goes West

For the first time, I noticed the media talk about Duchnne. All thanks to Darius, they covered his mission and his journey so far.

Started by Bains

1 Feb 8, 2010
Reply by cathy


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