Detroit Zoo Walk Spreads Love & Dystonia Awareness

5th Annual Event Highlights Resilience of Dystonia Community & Urgent Need for a Cure

7/25/18

On Sunday, hundreds gathered from across Michigan to attend the 5th Annual Detroit Dystonia Zoo Walk. The event was organized by Rosemary Young, a member of the DMRF’s Community Leadership Council and founder of the Metro Detroit Dystonia Support Group. Rosemary and Edward Young’s seven-year-old son Kavin is diagnosed with dystonia. Event sponsors include Allergan, US WorldMeds, Ipsen, Merz, Novi Surgery Center, and The Henry Ford Parkinson's Disease and Movement Disorders Center.

At age two, Kavin inexplicably started walking on his toes. He then developed painful, prolonged muscle spasms in his feet, legs, hands, arms, fingers, mouth, and tongue. A neurologist diagnosed Kavin with generalized dystonia in 2013. There were times that Kavin was in so much pain he couldn't stand to be touched; even the brush of his clothing against his skin was painful. One of Kavin’s sources of comfort throughout the years has been his teddy bear. As part of this year’s Zoo Walk festivities, stuffed bears were given to every participant affected by dystonia as an act of friendship and to celebrate their resilience. Kavin's message: "I hope your bear will be your best friend too, because my bear is mine."

In her greetings to participants, Rosemary said, "“I hope that you all enjoy a wonderful day of fellowship and family fun here at the Detroit Zoo and leave this event today with new and helpful information, feeling more loved and supported than when you came, able to connect with old dystonia friends and develop many new dystonia friendships, and most importantly leave with a greater feeling of hope that with events and support like this and the work that the DMRF does, a cure isn’t far away!”

DMRF Executive Director Janet Hieshetter presented Rosemary and her family with an award to commemorate the Detroit Zoo Walk’s fifth anniversary. Dr. Neepa Patel, a movement disorder specialist from Henry Ford Health System and past DMRF Clinical Fellow gave greetings and thanked attendees for their support. Karen Flanagan, who organized the original Dystonia Zoo Walk which has been replicated across the country, was also a special guest.

Rosemary has traveled to Washington, DC to advocate for federal research funding and protecting treatment access on behalf of the Dystonia Advocacy Network and has participated with Kavin in volunteer-driven clinic days to educate local medical school students on dystonia from the patient perspective.

Additional Dystonia Zoo Walks are scheduled in communities across the country.

The Dystonia Medical Research Foundation (DMRF) 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. The DMRF can be reached at 800-377-3978 or www.dystonia-foundation.org.

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The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.