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arnold posted a discussion
Thursday
arnold replied to arnold's discussion CEO of Sarepta: We believe the FDA will partner with us to get this product to patients who need it
May 10
arnold posted a discussion
May 9
arnold shared PPMD's event on Facebook
May 6
arnold is attending PPMD's event
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Drisapersen Update webinar with GSK at Online Webinar- Eastern Time Zone

May 6, 2013 from 12pm to 1pm
You are invited to participate in a “Drisapersen Update” webinar with GSK.  The purpose of the webinar is to update the Duchenne community about Phase II clinical trial results for GSK’s drisapersen drug for the treatment of Duchenne muscular dystrophy.  GSK investigator John Kraus will present and answer submitted questions.…See More
May 6
arnold posted a discussion
May 2
arnold replied to irishgirl's discussion Sarepta and their push for Accelerated Approval of Eteplirsen
"Eteplirsen Phase IIB study met the primary endpoint of increase in novel dystrophin Eteplirsen Phase IIB study met the primary endpoint of increase in novel dystrophin produced defined as a % of dystrophin positive fibers— Significant…"
Apr 23
arnold replied to arnold's discussion Mother and son who fought the FDA are now fighting the state
"I bought in during Hudson's term as ceo. I was told it was a shoe for FDA clearance on its stent application. That failed & bought more on its shoe in Flu drug with the FDA. That failed  then I bought into Chris's story on…"
Feb 18
Andrea Cleary replied to arnold's discussion Mother and son who fought the FDA are now fighting the state
"Arnold, I can tell that you actually do care, so thank you for your efforts. As an "oustider looking in" at us fish in the bowl, you sometimes get our ire up, and we may spray you with our slimey, stinky tank water, so please forgive us…"
Feb 18
arnold replied to arnold's discussion Mother and son who fought the FDA are now fighting the state
"Andrea, I don't know what to say. I'm an outsider looking in who can't feel the pain of the parents let alone the boys. I've tried to do better as an advocate but still seem to come up short. I call my congressman and my…"
Feb 18
Andrea Cleary replied to arnold's discussion Mother and son who fought the FDA are now fighting the state
"Arnold, Seems like the usual for DMD parents: always having to fight for the "normal things" for our kids, things that everyone else has the luxury to take for granted. The school district knew the school was unsafe for Austin and others,…"
Feb 18
arnold posted a discussion
Feb 18
arnold posted a discussion

Jenn met with Dr. Janet Woodcock, the FDA's director of the Center for Drug Evaluation and Research

The family also meet with Sen. Patrick Leahy, D-Vt., who released a statement to the Reformer."I share the McNarys' belief that the FDA should ensure the safety and effectiveness of all drugs that are brought to the marketplace," Leahy stated. "I was also pleased to join with eight other senators this week to introduce the MD CARE Act. Since its original passage in 2001, that law has helped to develop important therapies for those suffering from MD and to extend life expectancy by 10 years."…See More
Feb 16
arnold posted discussions
Feb 15
arnold is attending PPMD's event
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Webinar: Ataluren Update with PTC at Online Webinar from 12-1 pm Eastern Time Zone

January 17, 2013 from 12pm to 1pm
January 17 at noon EST Dr. Jay Barth, Vice President for Clinical Development at PTC Therapeutics will present information about the study design and timeline for the upcoming Phase 3 confirmatory study of ataluren in Duchenne muscular dystrophy.Additional Information:Questions can be submitted until noon on Monday, January 14, by emailing info@ParentProjectMD.org (please put…See More
Dec 20, 2012
arnold replied to arnold's discussion Sarepta Therapeutics Announces Significant Clinical Benefit With Eteplirsen After 36 Weeks in Phase IIb Study for the Treatment of Duchenne Muscular Dystrophy
"Item 8.01 Other Events On August 31, 2012, the Company and a third-party manufacturer entered into an ordinary course manufacturing agreement to construct manufacturing facility modifications, which will enable the Company to prepare for larger…"
Sep 4, 2012

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