A Monroe resident is helping raise money for a rare disease.
On Saturday morning, Aug. 15, the Toledo Zoo will be hosting Dystonia Zoo Day, which raises money to research dystonia, a rare neurological movement disorder.
The event is co-hosted by Kristin Cinglie of Monroe, who started the Zoo Dystonia Day in 2019 after attending the same event at the Detroit Zoo. At the time, she was feeling hopeless, as she was dependent on a cane to walk, her dystonia was spreading to other parts of her body, and her neurologist wasn’t offering her any new treatment options. However, at the Detroit Zoo event, she met a new team of doctors and was able to eventually receive deep brain stimulation surgery.
“I wanted to provide that same opportunity to other dystonia warriors in our community that were feeling hopeless or alone in their personal dystonia journeys,” she said. “If the Toledo event provides even one dystonia warrior with the community support they are needing or connects them with a resource that offers them a new treatment option that gives them hope, then it has done what I was hoping it would do.”
According to Cinglie, she finds herself having to explain what dystonia is a lot, even in the medical community, making events like this important for raising awareness. However, it’s also important for helping people with dystonia connect.
“Being diagnosed with dystonia can feel very isolating,” she said. “In most cases, the person with dystonia has not heard the word dystonia until they get their diagnosis.”
“Having the support of someone who has been through what you are going through is helpful, especially when you have difficult decisions to make,” she added.
She encourages the public to educate themselves about dystonia, reaching out to someone with the disorder for any questions, and to bring new attendees to dystonia events.
“It will take all of us working together to find a cure,” she said.
The event is also hosted by Karen Eisel, whose brother-in-law, John Eisel, of Sylvania, suffers from dystonia, which has rendered him unable to walk, or communicate without assistance. It also causes him great pain in his neck and painful spasms.
“I didn’t think about it much because I didn’t know anything about it,” he said of his 1989 diagnosis. “I had no idea it would get this bad.”
John Eisel has been in treatment for more than 30 years, including Botox injections in his neck that let him swallow, and undergoing three deep brain stimulation surgeries. They were ultimately successful, though he continues to hope for a cure to his maladies.
“Even though my dystonia symptoms have gotten worse I believe there will be better treatments and an eventual cure in the next 5 to 10 years through research and advancement in AI technology,” he said.
Registration for Dystonia Zoo Day will begin at 9 a.m., and the event itself will begin at 10 a.m. It’s $25 for adults and $15 for children 12 years and under. Registration includes zoo admission. The money goes to the Dystonia Medical Research Foundation, an organization dedicated to promoting awareness, and supporting the needs and wellbeing of those with dystonia.
It will feature door prize ticket drawings, kids table activities and games, and the chance to enjoy the zoo.
— Contact reporter Connor Veenstra at CVeenstra@gannett.com.
This article originally appeared on The Monroe News: Monroe resident hosts zoo event to fight dystonia
Reporting by Connor Veenstra, The Monroe News / The Monroe News
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By Connor Veenstra, The Monroe News | USA TODAY Network
