Advocacy (81)

Discussions Replies Latest Activity

FDA: Approve Vyondys 53 (Golodirsen) for the treatment of Duchenne Muscular Dystrophy

Hello everyone! If you have a moment, please consider signing my petition to approve Vyondys 53 (Golodirsen) for the treatment of Duchenne…

Started by Jacob Hill

0 Sep 20, 2019

Access to Translarna - a lego movie

Please view and share this lego movie about the work in the UK being undertaken by the Duchenne community to get access to the drug https…

Started by Marks33

1 Feb 11, 2015
Reply by Mike O


Besides signing the petition, please ask your spouse, adult kids, friends, co workers, or others to sign the petition.  Post it on Facebook…

Started by micro kid

4 Mar 11, 2014
Reply by PPMD

The Petition asking the FDA to Accelerate Approval of treatments for Duchenne

            The White House petition to ask the FDA to Accelerate Approval for treatments for Duchenne Muscular Dystrophy has 17,515 signat…

Started by Richard Darienzo

2 Mar 11, 2014
Reply by PPMD

Need a favor ....  is have our 2nd Annual Fight Night in March.  We are making a video and if possible we would like a short video of ea…

Started by Samantha Altilio

0 Jan 6, 2014

Innovative Telehealth Initiative

We are developing a patient-centered project utilizing telehealth (high-quality, televideo communication via home computers, iPads, smart p…

Started by David Steinhorn

0 Jan 2, 2014

FDA Approval of Exon Skipping

I realize that this is a little premature, but since I have a 10 year old who is predicted to benefit from skipping either exon 43 or 45, b…

Started by Paul Cliff

86 May 3, 2013
Reply by Paul Cliff


Senator Collins Mourns the Passing of Matthew Denger

WASHINGTON, D.C.-U.S. Senator Susan Collins released this statement following the death of Matthew Denger.  Matthew, a student at the Unive…

Started by PPMD

0 Feb 27, 2013

Pat Furlong featured in Belle of Steel interview for AgeView Press

Pat Furlong will be featured as an advocate of DMD to discuss how she changed the focus and reach of the Duchenne's community through the e…

Started by Jeanette Vaughan

0 Aug 29, 2012

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


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