Advocacy (81)

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2010 Advocacy

I just bought my tickets. With tax & everything, r/t from So Cal was only $240.00

Started by Paul Cliff

8 Jan 31, 2010
Reply by Paul Cliff

Dr. Diana Escolar and Dr. Kathryn Wagner ~ looking for good quality care for your son? Here's a dynamic team!

Dear Families, Friends and Colleagues, I've signed a contract with Kennedy Krieger Institute in Baltimore and will start seeing patients…

Started by Tina

1 Jan 9, 2010
Reply by Linda

In New Way to Edit DNA called Zinc Fingers

Found that very interesting has the potential to out perform current gene therapy techniques. I wood like to see MDA look into this to see…

Started by Jason Darienzo

0 Dec 29, 2009

Mom, why?

My son, Michael, is 4 years old with BMD. He was diagnosed a year ago. Since he was 3 we told him that God gave him "Special Muscles". He w…

Started by Tamara "Michael's Mulisha"

10 Sep 22, 2009
Reply by Janine

Summer Advocacy Program - 2009

Anyone had success in getting an in-district meeting scheduled with their House member? I've heard nothing so far, after 3 emails and 2 ph…

Started by Keith Van Houten

4 Aug 11, 2009
Reply by Jacobs Mommom

Achieving a Better Life Experience Act of 2009 (ABLE Act)

First glance reading the synopsis of this Act - it seems like something that we as a community should consider advocating for (disclaimer -…

Started by Paul Johnson

2 Jul 22, 2009
Reply by Brian Denger

Federal budget - FY2010

The President released his budget proposal for FY2010 to Congress this week, as you've no doubt heard in the news. Here's what I've been a…

Started by Keith Van Houten

10 Jul 21, 2009
Reply by Keith Van Houten

"Gene Guru" named new head of NIH

Dr. Francis Collins has been named the new head of the National Institutes of Health. He's quite well known in the field of genetics. He wa…

Started by Keith Van Houten

2 Jul 9, 2009
Reply by Jacobs Mommom

Help!!!! Canine Assistants Denied My Son!!!

Canine Assistants has denied my son Shane his service animal! We were awarded it in 2004 and sponsered by Purina and Randalls,So It has bee…

Started by Danie

3 Jun 23, 2009
Reply by Janine

This Years House and Senate letter

Hi all, Just a quick note to remind everyone to make contact with congress to get support for NIH and CDC funding. We have a letter circul…

Started by Julie Garcia

11 May 8, 2009
Reply by Julie Garcia


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