Patient support groups and advocates work to generate awareness and fundraising for Multiple System Atrophy (MSA) a rare, incurable brain disease.
Facebook, Worldwide (PRWEB) March 11, 2010 -- There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.
Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson's Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy also known as MSA, affects multiple systems of the body. It's a disease that's hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.
"Miracles For MSA," a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler's Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness month was sparked by Bryant's former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers' wife suffers from MSA.
"MSA is so rare that many cases are wrongly diagnosed as Parkinson's or other diseases with similar symptoms," said Pam Bower, an active member of the Facebook page, who's mother-in-law was afflicted with MSA. "My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds."
Other organizations have joined the effort to proclaim March as MSA Awareness month. A prominent organization supporting greater awareness is the Shy-Drager Syndrome (SDS) Multiple System Atrophy (MSA) Support Group. “By declaring March Multiple System Atrophy Awareness month, SDS/MSA organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively” stated Vera James, co-President of the SDS/MSA Support Group.
About Multiple System Atrophy
According to the National Institutes of Health, "Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure." Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy. For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet.
About the SDS/MSA Support Group
The SDS/MSA Support Group is a 501c3 nonprofit devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals. The Support Group is one of the most sought-after resources for those dealing with the disease. Services and education offered by the group include an annual patient/caregiver national meeting, quarterly webinars, educational materials and a toll free hotline (1-866-737-5999) designed to offer much needed emotional support for patients and caregivers. For more information please contact Vera James at 1-866-737-5999 or visit the official SDS/MSA Support Group website.
About “Miracles for MSA” on Facebook
Miracles for MSA is a social networking group on Facebook dedicated to uniting people affected by Multiple System Atrophy. The group enables patients, caregivers, family members and friends to join a community, discuss a range of topics about the rare disease and to advocate for disease awareness and research. To further generate awareness and education the group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website, "Miracles for MSA" Facebook page. For more information about Miracles for MSA contact Bob Summers
Read the full story at http://www.prweb.com/releases/2010/03/prweb3708884.htm.
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