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Facebook Group Fights to Create Awareness for Rare Neurological Disease
Facebook Group Fights to Create Awareness for Rare Neurological Disease; Declares March as Multiple System Atrophy Awareness Month
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.
“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. Help us find a miracle for MSA.”
This is now the third year of MSA Awareness month activities, The Miracles for MSA Facebook page now has more than 3,000 fans. (http://www.facebook.com/
This year a film about Multiple System Atrophy and its direct effects on a family in South Dakota has been entered in the Neuro Film Festival sponsored by the American Academy of Neurology. The Miracles for MSA community has come together to try to help make this film the fan favorite in the voting. Should the film win this distinction it will mean much increased publicity for Multiple System Atrophy and much needed awareness among the 10,000 attendees who will be present at the American Academy of Neurology’s 64th Annual Meeting on April 22, 2012 in New Orleans, where the winning film will be screened. At press time, the MSA film was in first place, with voting closing on March 8.
March is Multiple System Atrophy Awareness Month, page two
“I had just run 42 km when a few months later I was diagnosed with MSA, now I cannot run a flight of stairs,” said Brenda Paquet, living with MSA in Ottawa, Canada. “I am always trying to raise awareness as it is only through awareness a cure will be found. It is my first thought when I open my eyes and when I close them at the end of the day…there must be something that will work. I feel I was given a death sentence, not for doing anything wrong but for doing everything right. Currently I am in the race of my life, to find a cure for MSA.”
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.
“Ann was first diagnosed with MSA in 2003 and has been fighting to stay active but is in a slow, steady decline because Multiple System Atrophy is a progressively, degenerative disease,” said her husband Roger, from their home in Westminster, Mass. “One of the symptoms of the disease is neurological orthostatic hypotension (NOH). We have been advocates as patient and caregiver for a new medication, Droxidopa, which combats the symptoms of NOH. We appeared at an FDA hearing in February to explain Ann’s success with the medication during the research phase. She has been in the research trial on the medication since August, 2008. If final approval is given for the medication the trade name will be Northera.”
Approximately 50,000 Americans are now reported to have MSA (possibly more). A recent epidemiological survey, reported on the European MSA Study group website, has found MSA to have a prevalence rate of 4.4 people per 100,000.
Those are the clinical facts of Multiple System Atrophy. But they don’t begin to address the havoc the disease wreaks not only on patients but also on family members, caregivers and friends, who watch their once vibrant loved one gradually lose all those abilities once taken for granted. It is the goal of all those who have been affected in some way by this disease to draw attention to it, not only during March but also throughout the year.
“Novel research to diagnose this debilitating illness sooner and to separate it from Parkinson’s and other disease is critical for creating a better future for MSA patients,” said Dr. Anna Langerveld, who owns Genemarkers of Kalamazoo, MI. “An important first step was taken in 2009 with a pilot study to define a genetic signature of MSA in patient blood samples. The initial work was a collaboration between Genemarkers, Dr. Charles Ide of Western Michigan University and Dr. David Robertson of Vanderbilt University Medical School. Efforts have begun to design and fund a new study to extend and improve these findings. Success will require continued scientific and financial participation from all interested groups. Our passion and the data generated in the ongoing work will expand awareness of MSA, draw more scientists and physicians into our efforts, and begin to bring hope to MSA patients and caregivers.”
For more information on Multiple System Atrophy, including links to MSA organizations and research groups worldwide please visit http://www.MSAawareness.org
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Miracles for MSA aims to reach all touched by Multiple System Atrophy and to encourage them to take action in spreading awareness, raising money and inspiring hope.
To join the “Miracles for MSA” Facebook page, visit http://www.facebook.com/