Thirteen cities across the country are hosting Dystonia Zoo Walks in 2019. The purpose of these fun community events is to increase public awareness of dystonia, a little-known but surprisingly common neurological disorder. Proceeds support the mission of the Dystonia Medical Research Foundation (DMRF), which supports urgently-needed medical research toward a cure and programs for individuals and families impacted by the disorder. Zoo Walks attract 5,000+ participants annually.
Dystonia Zoo Walks are organized by dedicated local volunteers, in partnership with DMRF.
The 4th Twin Cities Dystonia Zoo Walk on June 22 was the first event of the year. The event was organized by Shanna and Brad Schmitt, Billy McLaughlin, and members of the Minnesota Dystonia Support Group. Brad developed cervical dystonia, affecting his neck, in 2008. Cervical dystonia is among the most common types of dystonia and yet is frequently misdiagnosed due to a lack of awareness even among medical professionals.
“For me, the zoo walks represent a local, tangible hope for more connections, more treatments, and a cure,” says Shanna. “Every year, we meet new people who didn’t know there’s local support and we reach more people who now know what dystonia is. We’re actually part of the solution when we participate locally. News of federal grant funding coming from Washington, DC or news of promising research coming from the DMRF or researchers around the country is great, but it feels more hopeful when we’re doing our part here in the Twin Cities.”
The 6th Annual Detroit Dystonia Zoo Walk took place July 14. DMRF Community Leadership Council Member Rosemary Young organizes the event in honor of her young son Kavin, who has generalized dystonia.
The 4th Portland Dystonia Zoo Walk was organized by Dee Linde and members of the Portland, Oregon & Southwest Washington Dystonia Support Group. The event took place July 20. Dee is a US Navy Veteran who unexpectedly developed dystonia in 1997 as a result of prescribed medications. She was among the first group of pioneering dystonia patients to undergo deep brain stimulation (DBS) surgery.
Dystonia Zoo Walks are not your typical charity walk. These events do not have a formal walking course, and participants don’t have to walk at all. Dystonia Zoo Walks unite local families impacted by dystonia and invite the greater community to learn about dystonia and support efforts to find a cure. Zoo Walk participants can spend the day enjoying the Zoo or just stay for the DMRF festivities. National sponsors include Ipsen and Allergan.
Dystonia is a chronic, often disabling, neurological disorder marked by excessive, involuntary muscle contractions that cause abnormal body movements and postures. Common signs include abnormal movements of the head and neck, excessive blinking, a breathy or choking voice, hand cramps, or a twisted foot. Because dystonia is not better known, symptoms are often mistaken for mental illness, substance abuse, or poor social skills. Dystonia impacts people of all ages and backgrounds. Conservative estimates state no fewer than 250,000 Americans are affected. There is currently no cure, and though treatments exist there is no single therapy that benefits even a majority of patients.
The Dystonia Medical Research Foundation 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.