On October 04, 2015, a group of tri-state dystonia patients including Pamela Sloate of New York, NY, and fellow members of the Mount Sinai Beth Israel Dystonia Support Group, are combatting widespread lack of awareness of their rare neurological disorder with the 1st Annual Bronx Zoo Walk.
New York City’s inaugural Zoo Walk, which will boast an attendance of 400+, follows successful events around the country attracting over 2,000 individuals in 2014. Patients seek to make dystonia as familiar to the public as less common diseases such as muscular dystrophy and ALS. The Bronx Zoo Walk launches on the heels of Dystonia Awareness Month in September. Proceeds support the work of the Dystonia Medical Research Foundation, the leading organization advancing cutting-edge research, stimulating awareness, serving as an educational resource, advocating for the needs of the dystonia community, and supporting those affected and their families.
Dystonia is a little-known neurological movement disorder affecting an estimated 300,000-500,000 people in North America, one-third of them children. Dystonia causes uncontrollable muscle spasms that twist the body into involuntary movements and painful postures. There is no known cure. It can strike children of any age and disables adults in the prime of their lives. Dystonia is frequently misdiagnosed or goes undiagnosed, sending patients on a daunting search for answers. Prompt diagnosis is critical to help individuals gain much-needed relief from their debilitating symptoms.
Pamela Sloate has lived with a generalized form of dystonia affecting her limbs and speech for 40+ years. As Pamela recounts, her involuntary movements complicate the simplest tasks like walking across a room. Notwithstanding her physical struggles, Pamela has manifested a resolve to put dystonia on the map and support fellow patients. She leads a dystonia support group at New York’s Mount Sinai Beth Israel, serves as a dystonia advocate, fundraises, and publishes her own blog addressing the twist and turns of life with dystonia at www.dystoniamuse.com.
“Whenever I explain I have dystonia, I’m met with a blank stare. Our efforts to educate the public, the medical community and our government representatives fuel our hope for greater understanding of dystonia and support our fight for a cure.” — Pamela Sloate.
This family-friendly event kicks off at the Bronx Zoo’s Dancing Crane Pavilion at 09:30
a.m. The event is supported by Allergan, Amsterdam Ale House, Chocolate Works, Church Publick, Ipsen, Lucy’s Whey, Magnolia Bakery, Merz, Mount Sinai Beth Israel, North Shore-LIJ, Parlor Steak & Fish, Sarabeth’s, Serafina, Third Avenue Ale House, US WorldMeds, William Greenberg Desserts, and Whole Foods.
For more information on Dystonia, please visit here.