Patient & Medical Communities Unite to Raise Awareness of Dystonia, A Rare Neurological Disorder

By: PRLog
Inaugural Dystance4Dystonia Bronx Zoo Walk Attracts 30+ Teams
NEW YORK & BRONX, N.Y. - Oct. 6, 2015 - PRLog -- On Sunday, October 4, more than 500 people, representing 30+ teams, gathered for the 1st Annual Dystance4Dystonia Bronx Zoo Walk. Zoo Walks across the country raise public awareness and research funds for dystonia, a little-known neurological disorder. In 2015 Zoo Walks are expected to raise $200,000 to benefit the Dystonia Medical Research Foundation, the leading dystonia research and patient advocacy organization.

"I'm overwhelmed by the tremendous support we received from our guests and sponsors,” says event organizer Pamela Sloate, who developed dystonia in childhood. “The Bronx Zoo Walk was truly a celebration of hope, and the tri-state community came out in full force to raise funds towards the cure we all await and shine a spotlight on our little-known disorder."

Teams at the Bronx Zoo Walk represented local families impacted by dystonia as well as prominent healthcare institutions: Albert Einstein College of Medicine, Columbia University Medical Center, Feinstein Institute for Medical Research, Mount Sinai, and Mount Sinai Beth Israel.

Leading dystonia expert Stanley Fahn, MD, Movement Disorders Division Founding and Emeritus Director at Columbia, stated: “The Bronx Zoo Walk was a great event for the Dystonia Medical Research Foundation. The large turnout demonstrates the compassion participants feel for each other and their interest in supporting dystonia research. The participants consisted not only of people with dystonia and their families, but also neuroscientists and medical professionals; all were there to defeat dystonia. My gratitude goes to Pamela Sloate who worked tirelessly to make this event so successful.”

Dystonia investigator Kamran Khodakhah, PhD, Professor and Harold and Muriel Block Chair in Neuroscience at Albert Einstein, added: “For my colleagues and me, the walk was particularly meaningful because it reminded us of the ultimate reward that our hard work might secure: a cure for dystonia. It was also crystal clear to us that every dollar raised by such activities in support of dystonia research is mixed with an incalculable amount of love."

Sloate has lived with generalized dystonia affecting her limbs and speech for 40+ years. Her involuntary movements complicate the simplest tasks, from making a phone call to walking across a room. Sloate is a dedicated dystonia advocate and fundraiser, leads a dystonia support group at Mount Sinai Beth Israel, and authors the popular blog, Chronicles of a Dystonia Muse.

The Bronx Zoo Walk is supported by Allergan, Ipsen, Merz, US WorldMeds, Mount Sinai Beth Israel, The Feinstein Institute for Medical Research at North Shore-LIJ, Whole Foods Market, Bella Face Painting, Ben Asen Photography, Caricatoonist, Sammie & Tudie, Superior Soundz Entertainment, Amsterdam Ale House, Chocolate Works, Church Publick, Lucy's Whey, Magnolia Bakery, Massage By Touch Evolution, Parlor Steak & Fish, Sarabeth's, Serafina, Third Avenue Ale House, and William Greenberg Desserts. Plans are underway to expand the event in 2016.

Dystonia is a chronic neurological movement disorder affecting no fewer than 250,000 men, women and children in the United States. Dystonia causes uncontrollable muscle spasms that twist the body into involuntary movements and painful postures. There is not yet a cure. Dystonia is frequently misdiagnosed; patients may go years without a correct diagnosis and treatment.

The Dystonia Medical Research Foundation (DMRF) is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and 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.

Contact
Jessica Feeley
Dystonia Medical Research Foundatio
***@dystonia-foundation.org

Photos: (Click photo to enlarge)

Dystonia Medical Research Foundation Logo L-R: Dr. Stanley Fahn, Dr. Kamran Khodakhah, Janet Hieshetter, Pamela Sloate  Zoo Walk teams represented individuals impacted by dystonia and area hospitals. A day at the Bronx Zoo raised dystonia awareness and research funds.

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