Toledo is the latest of 13 cities across the USA to host a Dystonia Zoo Walk in 2019. The event on October 5 was the very first Dystonia Zoo Walk to take place in Toledo. The purpose of this community day at the zoo was to raise dystonia awareness and funds for medical research. Dystonia Zoo Walks are expected to draw 5,000+ participants nationally and raise $300,000 in support of the Dystonia Medical Research Foundation. National Sponsors are Allergan and Merz Neurosciences. Ipsen has also supported all events in 2019.
Kristin Cinglie of Monroe, MI organized the Toledo Dystonia Zoo Walk to promote greater awareness and to bring together individuals and families affected by dystonia in the local area. Special guests included neurosurgeon Ellen Air, MD and Deep Brain Stimulation Program Coordinator Julia Wall from Henry Ford Health System, as well as DMRF Community Leadership Council Member Rosemary Young, who spearheads the annual Detroit Dystonia Zoo Walk. Kristin’s son Dylan educated members of the ZooTeens volunteer program about dystonia in advance of the event.
Kristin was diagnosed with dystonia in 2012 after years of misdiagnosis. A chemical engineer and lifelong athlete, she began noticing severe cramping and tightness in her leg and shoulders while training for a half marathon. Today, Kristin experiences chronic, painful muscle spasms in her neck, torso, leg, arm, and feet. She often needs a cane to walk, and experiences debilitating headaches. Kristin has traveled to support Dystonia Zoo Walks in Cleveland, Pittsburgh and Detroit. She hopes the Toledo Zoo Walk may yield interest in a local dystonia support group.
Crossroads Community Church supported Kristin’s event and created a video to help share her story.
Dystonia is a neurological movement disorder that causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest 250,000 Americans are affected. Although treatment options exist, there is not yet a cure.
For information about dystonia, treatments, support resources, and locating medical specialists, the Dystonia Medical Research Foundation (DMRF) can be reached at www.dystonia-foundation.org and 800-377-DYST (3978).