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Advocacy (81)

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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
advocacy 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's...one 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