Multiple System Atrophy Awareness

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Multiple System Atrophy Film Wins “Fan Favorite” at Neuro Film Festival

Against all odds, video featuring woman with very rare neurological disease wins fan favorite at the Neuro Film Festival.

 

FOR IMMEDIATE RELEASE

 

PRLog (Press Release)Apr 22, 2012 -
Sioux Falls, South Dakota  -  Today Sioux Falls resident, Paola Drapkin Vermeer received the call from the Neuro Film Festival that she had been anticipating for several weeks.  The call confirmed that her video entry depicting her mother Patricia Drapkin’s struggle with the rare neurological disease Multiple System Atrophy had been officially voted fan favorite via online voting.

For several weeks in late February and early March the worldwide community involved with raising awareness for Multiple System Atrophy had rallied to get out the vote through their social media connections.  The votes came in slowly at first but then momentum began to build. During this period Paola made these remarks to supporters: “When I check the voting status of the video, I am always moved to tears…each time the number of votes is higher than the last time and each time I continue to be amazed.”

“Multiple System Atrophy (MSA) is a rare disease,” said Cindy Corminy of Vanderbilt University Medical Center, one of the hubs for research for this and other neurological diseases. “But, if your loved one has it, it’s no longer rare to you.”

 

Watch the Fan Favorite film here: http://www.youtube.com/watch?v=t-Db2cMgvSs

Multiple System Atrophy is a neurodegenerative disorder that affects many of the autonomic body systems that people take for granted. The symptoms can occur in any combination, from loss of balance and coordination, fainting and dizziness due to severely low blood pressure, bladder and bowel issues, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS.

So how was a film on such a rare disease able to win the fan favorite? The film festival happened at an opportune time for the MSA community since the voting window ran into March which has been designated Multiple System Atrophy awareness month (see  http://www.prlog.org/11814804-facebook-group-fights-to-cr… ) Fans of the facebook group Miracles for MSA http://www.facebook.com/Miracles.for.MSA worked feverishly to garner votes from family and friends creating a buzz of excitement as word of the film spread.

“I have to say that I feel an overwhelming sense of community with all those that have voted, shared the link and asked their friends and family for their vote” says Paola Vermeer. “Along with that sense of community comes a sense of total and complete humility, that my small effort to bring MSA some awareness has been embraced so strongly”.

Previously known by such names as Shy-Drager Syndrome, sporadic olivopontocerebellar atrophy and striatonigral degeneration, MSA is not considered to be hereditary. It generally affects middle-aged men and women, advancing rapidly, with progressive loss of motor skills, eventual confinement to bed, and death.  It is very rare for someone to live 15 years with MSA. There is no remission from the disease and currently no cure. The current lack of awareness of MSA leads to misdiagnosis and mistreatment, as well as misdirected research funding that could be better applied to the MSA effort.

Sadly, Paola’s mother Patricia passed away from complications of MSA in October 2011.   “Mom’s MSA video will be shown tonight at the AAN Neuro Film Festival at 8:30pm in New Orleans at the Academy of Neurology Annual Meeting and promptly posted on their website and facebook page. Thanks again to all that voted and shared the link. This will be a great day for MSA awareness and will hopefully make a difference in the care, diagnosis and treatment of MSA patients the world over. It’s a great day for you, Mom, as your suffering will surely help many. This is a victory for MSA!”

You can watch all the 2012 Neuro Film Festival videos at this website

For more information on Multiple System Atrophy please see http://www.MSAawareness.org

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