Subject: e-petition to the White House urging accelerated approval of therapy for Muscular Dystrophy 03/21/14 Hi, Julie - Several months ago my six year old grandson was diagnosed as having Duchenne Muscular Dystrophy. Below are two e-links. The first link is of an article from the Huffington Post – which discusses the serious implications of the FDA’s decision of several months ago not to grant accelerated approval for “eteplirsen” – a most promising therapy in the “treatment” of Duchenne, in spite of a successful, albeit a somewhat limited in size - Phase 2b clinical trial. The second link is to an e-petition to the White House urging that accelerated approval to the eteplirsen therapy be granted. Please sign the petition.. Please also forward this e-mail with the link to the petition to others – to friends, family, business associates etc. – so that they can sign the petition as well, as the goal is to have the petition signed by at least 100,000 people by late March. When I last checked, the petition had over 61,000 signatures, so while it already has a significant number of signatures, it still has quite a way to go to reach the 100,000 signature threshold. Thank you very much for your help. huffingtonpost/tracy-seckler/eteplirsen-duchenne_b_4904850.html https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN Marty
Posted on: Fri, 21 Mar 2014 18:23:33 +0000
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