Advocacy (90)

Discussions Replies Latest Activity

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

Social Security

Does anyone know when you should start applying for SSI?  My son is 15 and we don't qualify, because of our salary.  My understanding is, w…

Started by Karen Jones

16 Jan 9, 2011
Reply by Cheri Gunvalson

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