Advocacy (91)

Discussions Replies Latest Activity

Add your story to PPMDs 2012 Advocacy Effort with a flyer

I will be making the trip to Washington, DC next month to advocate for Duchenne Muscular Dystrophy. I'm from Pennsylvania and to date we o…

Started by Gail D. McVicker

3 Jul 1, 2012
Reply by Gerardo Javier reynoso

Starting a Support Group in Northwest Ohio Area

Hello, We have a son with Duchenne, he is 6 years old and his name is Braedan. We found out 2 years ago, so we are still very new to this w…

Started by Tammy Henegar

1 Jun 1, 2012
Reply by Johnna Drazetic MDA RN

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

Special Needs Trust

My husband and I just started discussions with our Investment guy and our attorney (ie. my brother in law) about setting up a Special Needs…

Started by Donna

14 May 1, 2012
Reply by Rosalene Graham

How can parents help along FAST ACT 2012? a.k.a House Resolution 4132

http://www.rarediseases.org/news-events/news/fast-act-2012 “Accelerated Approval” refers to a pathway at FDA that allows for earlier approv…

Started by David

1 Mar 22, 2012
Reply by David

Insurance

We just learned tonight that if you can get critical health insurance through Sun Life/Clarica before your child is diagnosed, your child c…

Started by Joshua's mom

3 Mar 7, 2012
Reply by Joshua's mom

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

Helping others

    Hello to all who read this,           My name is Shawn Arndt.  I am the father of a little angel who passed away on Nov. 2, 2009.  His…

Started by Shawn Arndt

1 Aug 19, 2011
Reply by Karen Gabel

Duchenne Updates on Twitter

Are any of you guys on Twitter? I've found that following @Duchenne_Tweats, @MDAnews and, of course, both @CureDuchenne and @ParentProjectM…

Started by Jeffrey Kopp

7 May 24, 2011
Reply by Jon Moulton

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

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