3rd Twin Cities Zoo Walk Uniquely Embodies Mission to Find a Cure

6/18/18

The rain did not deter supporters from attending this weekend’s 3rd Twin Cities Dystonia Zoo Walk organized by Shanna and Brad Schmitt, Billy McLaughlin, and members of the Minnesota Dystonia Support Group. The Twin Cities Zoo Walk and its supporters uniquely highlight the power of grassroots organizing to fulfill DMRF’s multi-faceted mission: to advance research toward a cure, promote awareness and patient education, and to provide support resources to affected individuals and families.   

The Minnesota Dystonia Support Group is a tremendous source of comfort and solidarity for the local dystonia community. Members, including Co-leaders Brad and Shanna Schmitt, are active in legislative advocacy through the Dystonia Advocacy Network, which has successfully convinced Congress to include dystonia in the annual list of conditions eligible for study through the exclusive Department of Defense Peer-Reviewed Medical Research Program every year since 2010. This has meant millions of dollars of previously untapped federal research funding for dystonia.

Minnesota Governor Mark Dayton issued a proclamation recognizing June 16 as Dystonia Awareness Day in acknowledgement of the Zoo Walk. Congressman Jason Lewis also provided a letter of support.

Guest speakers at the event included dystonia researcher Robert Raike, PhD. Dr. Raike is a past DMRF research funding recipient whose work has been instrumental in understanding origins of dystonia in the brain. He is now a principal scientist at Medtronic, a company whose deep brain stimulation systems have transformed the lives of countless dystonia patients. He also serves as a reviewer for the Department of Defense Peer-Reviewed Medical Research Program.

Silent auction items included an autographed bat from Torii Hunter, formerly of the Minnesota Twins, and a private concert with critically-acclaimed guitarist and DMRF Awareness Ambassador Billy McLaughlin. Billy has been instrumental in the Minnesota Dystonia Support Group, serves at the highest level of DMRF leadership as a member of the Board of Directors. He and the DMRF leadership work every day to make sure DMRF is doing everything possible to stimulate research, promote awareness, and provide information and support to patients and families

Billy and Brad were interviewed on Fox 9 Minneapolis-St. Paul/KMSP morning programming to promote the event and greater dystonia awareness in the Twin Cities metro area.

Support group member and past Zoo Walk Chair Elizabeth Schultz is a member of the Editorial Board for the Dystonia Dialogue newsletter, which is the go-to magazine for the dystonia community for updates on research and the latest information on treatment and living well with dystonia. 50,000 people depend on the newsletter for information—and for many it is their only connection to others with dystonia.

The Twin Cities is an inspiring model of what it means for the local dystonia community to organize and mobilize on behalf of everyone affected by this devastating disorder.

Dystonia is a chronic, often disabling, movement disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. It is the third most common movement disorder. There are multiple forms of dystonia that impact people of all ages and backgrounds. Common signs can include an inability to control the position of the head, excessive blinking, a breathy or choking voice, hand cramps, or a dragging foot.

The Dystonia Medical Research Foundation (DMRF) is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families. The DMRF can be reached at 800-377-3978 or www.dystonia-foundation.org.



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