I just wrote letters to several members of the board and executive staff at the American Academy of Neurology asking that they reconsider showing the fan favorite film in the Neuro Film Festival... The MSA film won the vote this year and we heard it will not be shownat the AAN conference attended by 10,000+ neurologists!! We (The MSA Coalition) plan to put up a petition shortly if we dont hear back from them. Subject: Multiple System Atrophy - Neuro Film Festival Dear __________, I am writing today representing the Multiple System Atrophy (MSA) Coalition, the foremost U.S. charity supporting sufferers of this devastating neurodegenerative disorder which currently affects approximately 50,000 Americans. One of the MSA Coalitions key goals is to advocate for issues important to the MSA community; including creating greater awareness. Earlier this year, members of the MSA Coalition board of directors, including Dr. Tom Chelimsky, current president of the American Autonomic Society, along with grass roots advocates spoke out in support of FDA approval of the drug Northera/Droxidopa for the treatment of neurogenic orthostatic hypotension of which 80% of MSA patients currently suffer. Thanks to these efforts the drug was approved and will shortly be on the market. As well this year, U.S. Representative Keith Ellison (Minnesota 5th District) was persuaded by the grass roots community to introduce House Resolution 518 to the U.S. House of Representatives in support of recognition of March 2014 as Multiple System Atrophy Awareness month on a national level. These achievements came about because of the many passionate people who care deeply about working to create greater awareness of MSA. They firmly believe that with greater awareness will come more funding and better treatment options for those currently suffering. Multiple System Atrophy, despite being similar to and just as common as Lou Gehrigs disease is scarcely even heard of by a majority of medical practitioners and even most neurologists are not familiar with it. We and our supporters are determined to change this. Just recently, the grass roots mobilized once again, this time to gather votes from around the world in support of the MSA film My Hero An MSA Angel Story by Alix Sun, entered in this years Neuro Film Festival. This film was made in tribute to Ms Suns mother, Valerie Stephanski, who sadly passed away last year. According to the Neuro Film Festival website it appears this film obtained the most votes. Several people have inquired with AAN staff as to when fan favorite will be shown at the AAN conference. They wanted to make arrangements to attend at the right time to be able to see the film in person and were shocked to be informed that fan favorite is not scheduled to be shown at all this year. Our understanding is that fan favorite has been shown in past years. As the film is only 5 minutes in length we are very puzzled as to why it will not be shown, and if it will not be shown, we are very perplexed as to the purpose of a fan favorite film. We respectfully ask that the AAN board reconsider this decision and screen this very deserving film, the fans chosen favorite, to the medical community in attendance at the AAN conference. Sincerely,
Posted on: Thu, 03 Apr 2014 03:27:51 +0000
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