DriveAwayMSA Benefit Scheduled for June 26, 2016

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DriveAwayMSA, a fundraiser to benefit the Multiple System Atrophy (MSA) Coalition, will be held at the Camillus Elks Lodge on Sunday, June 26, 2016, from 2-6 p.m.

Jackie VandenBerg has multiple system atrophy a rare neurodegenerative disorder

Jackie VandenBerg

It is critically important to have MSA Coalition supporters like Jackie raising awareness and funds.

Hosted by Jackie VandenBerg and friends, the event will include music provided by bands The Mix Tapes, Baddogg, and Grupo Pagan, ample food and drink, and a wide variety of silent auction and raffle items. 

Multiple System Atrophy is a rare, largely unknown neurological disease that affects approximately 15,000 Americans.  MSA is often compared to Parkinson’s syndrome and Lou Gehrig’s disease (ALS) because people with MSA have difficulty controlling muscle activities, display tremors, and have problems with balance and coordination. MSA patients have issues with basic body functions controlled by the autonomic nervous system, such as regulation of blood pressure, digestion, bladder and temperature.  Sadly, as with ALS, Multiple System Atrophy is a progressive disease and life expectancy for those diagnosed with MSA is usually less than 10 years.

Because Multiple System Atrophy is so rare and not well-known by the public, funds for research to find a cure and more effective treatments, as well as to provide support and educational programs for patients are quite limited.  The MSA Coalition is the organization devoted to providing these programs, with 75% of all funds raised going to research, and with the majority of the remainder going toward education, advocacy, and patient support.  However, because it is such a relatively small organization, it depends in large part on its public members, such as Jackie, to conduct fund-raising activities.

“It is critically important to have MSA Coalition supporters like Jackie raising awareness and funds,” stated Don Crouse, Vice-Chairman of the Multiple System Atrophy Coalition.  “Because Multiple System Atrophy is so rare, grass root fundraising by those affected by MSA is the key to ensuring much needed clinical studies get the financing they need to be completed. In just the past two years, grass root fundraising efforts like the DriveAwayMSA event have allowed us to fund 17 different research projects, with 10 new studies expected to receive grants later this year.  It is amazing what a small band of motivated activists can accomplish.  Jackie’s event is sure to be a success and hopefully will provide inspiration to others in the MSA community to join the fundraising effort.”

All monies raised by the DriveAwayMSA benefit will go to the MSA Coalition.  Tickets to the event can be purchased online or by contacting driveawaymsa(at)gmail(dot)com.  For more information, go to:

For more information about the MSA Coalition, go to:

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Donald Crouse
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The Multiple System Atrophy Coalition
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