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Advocacy (81)

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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
PLEASE SIGNT FDA SAY YES PETITION AND ENCOURAGE OTHERS TO DO IT 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 Whitehouse.gov 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 .... www.pietrosfight.org 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
Staff 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