The SDS/MSA Support Group Officially Changes Name to The Multiple System Atrophy Coalition

The Multiple System Atrophy Coalition was founded in 1989 as a Support Group offering a toll-free hotline and an annual patient/caregiver conference. The new name was chosen to better reflect the 501(c)3 organization's new focus on advocacy, education, and multiple system atrophy research funding, while still offering its traditional support group services.

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The Multiple System Atrophy Coalition Logo
We believe our new name, The Multiple System Atrophy Coalition, reflects our mission and our desire to be an inclusive organization to the entire MSA community.”

Raleigh, NC (PRWEB) April 22, 2013

The Multiple System Atrophy Coalition, also known as The MSA CoalitionSM, announced today that it has completed the most important aspects of officially changing its name from the SDS/MSA Support Group. The new name was officially recognized by the state of Texas in early March, where the 501(c)3 charitable organization is incorporated. Since that time, the organization has obtained service marks for its new name and new logo. In addition, The MSA Coalition has filed its new name with the IRS, the Better Business Bureau and other government agencies, while beginning the process of updating its Internet properties (http://www.MultipleSystemAtrophy.org, Facebook, and Twitter.)

“We are very excited and proud of our new name, The Multiple System Atrophy Coalition,” stated Don Crouse, Board of Directors and volunteer for the Coalition. “Over the past two years or so the organization and its capabilities have really grown. From its founding date until just a few years ago the Support Group struggled to raise money and as such was limited to providing only emotional and educational support to the MSA patient/caregiver community devastated by this rare, disabling and fatal disorder. Three years ago we invested in a new website and we began to see a steady increase in donations. Today, we are much stronger financially and rejuvenated from a volunteer perspective. As such, we decided in late 2012 to change our name to better reflect our new mission, which now expands beyond just support group services to include educational activities, awareness and advocacy activities, and a dedicated Multiple System Atrophy Research Fund. We believe our new name, The Multiple System Atrophy Coalition, reflects our mission and our desire to be an inclusive organization to the entire MSA community.”

The MSA Coalition has an aggressive plan in place for 2013. In addition to changing its name, the Coalition is currently involved in or actively working to implement the following activities during this calendar year:

  •     Redesign and launch its website while updating content to reflect the four key areas of Coalition activities – Support, Education, Advocacy and MSA Research Funding
  •     Expand fundraising activities through partnerships with organizations like First Giving
  •     Develop and launch a new Multiple System Atrophy Research Grant program, including fully recruiting a world-class scientific advisory board (SAB) to review research proposals with awards granted by the end of this year
  •     Participate in MSA and rare disease advocacy events such as MSA Awareness Month (March), World MSA Day (October 3), Rare Disease Day (February 28) etc.
  •     Attend scientific sessions to meet and advocate with medical experts treating and/or researching MSA, such as the American Autonomic Society, Movement Disorder Society, and American Academy of Neurology
  •     Support and collaborate in the development of medical education programs for physicians currently caring for MSA patients
  •     Hold our largest planned MSA patient/caregiver conference this coming September in Milwaukee, WI in conjunction with a medical education program for physicians

“We have many important activities underway for this year,” stated Judy Biedenharn, Co-President of The MSA Coalition. “Our most important is the launch of our Multiple System Atrophy Research Grant Program, which will be launched soon. We have made great strides in recent years to get to this point, however, to continue funding our programs in the future The MSA Coalition needs to continue to increase the donations it receives. Right now we put 75% of every dollar received directly into our MSA Research Fund. The other 25% goes to funding our support, advocacy and education initiatives with only a small fraction going to administrative expenses. To continue funding research and to increase the money going into research we need more donations. Please contact our Coalition if you want to help with fundraising or to volunteer your time. The Multiple System Atrophy Coalition is here to support our community, fight for awareness, advocate for important issues, and to help researchers to someday find a cure.”

About Multiple System Atrophy

Multiple system atrophy (previously known as Shy-Drager Syndrome) is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time. According to the National Institutes of Health, "Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems (neurogenic orthostatic hypotension), combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. MSA 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 is available."

About The Multiple System Atrophy CoalitionSM

The MSA Coalition, formerly the SDS/MSA Support Group changed its name on March 1, 2013 in order to better reflect its mission as a 501(c)3 charitable organization representing the multiple system atrophy community. Started as a patient/caregiver support group nearly 25 years ago, the MSA Coalition now has a four-pillar mission:

  •     Supporting patients and caregivers affected by multiple system atrophy
  •     Educating patients, caregivers and healthcare professionals
  •     Financing and encouraging meaningful research toward identifying a cause and finding a cure for MSA
  •     Advocating for issues important to the MSA community, including creating greater awareness
For more information or to donate to The MSA Coalition, please visit: http://www.MultipleSystemAtrophy.org


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Attachments

The Multiple System Atrophy Coalition's brochure of services The MSA Coalition Brochure

The Multiple System Atrophy Coalition's brochure of services