WHAT IS DYSTONIA?

Dystonia is a brain disorder that causes extreme muscle spasms so intense they produce involuntary movements and postures of the body and limbs. Gait, balance, speech, and vision may be impaired due to the twisting, painful contortions. Put quite simply, people with dystonia cannot control the movement of their own bodies.

Dystonia is the third most common movement disorder following essential tremor and Parkinson’s disease. The disorder effects people of all ages, including many children. Dystonia is often misdiagnosed and patients may spend years without proper treatment.

ABOUT THE DYSTONIA MEDICAL RESEARCH FOUNDATION

From its founding in 1976, the mission of the DMRF has been to advance research for improved dystonia treatments, to promote awareness and education, and to provide coping support resources to patients and families. Forty years ago, affected individuals and families had nowhere to turn for information and very few doctors were familiar with the disorder. The DMRF has worked tirelessly to stimulate public awareness, advocate for the legislative and policy needs of the dystonia community (including federal research funding), and provide support resources to affected individuals and families, while focused on our ultimate mission of finding a cure for dystonia.

With your help, the DMRF can provide greater independence and mobility for everyone with dystonia.

DYSTONIA ZOO WALKS

Dystonia Zoo Walks are family-friendly community events that raise awareness of the brain disorder dystonia and support the work of the Dystonia Medical Research Foundation (DMRF). Over the last eight years, dystonia outreach events held at zoos have facilitated awareness, patient education, and community togetherness in a way that attracts those within and surrounding the dystonia community. A day at the zoo is an approachable activity for people of all ages and families of all backgrounds.

Dozens of Dystonia Walks Days are held across the country annually attracting thousands of participants and generating over 150,000 impressions on these high-traffic weekend days. Events attract attention from news media, often in response to the compelling human interest stories embodied by local patients. Participants build their teams to represent families impacted by dystonia, honor an affected friend or colleague, and represent local businesses and healthcare institutions. Each Zoo Walk combines educational opportunities and a fun, festival atmosphere. Guests, including medical experts, public servants, and members of the dystonia community, are invited to share their stories and talk about the need for continued medical research. Participants spend the day enjoying the zoo at their leisure, raising awareness and helping to inform the public. 

CONTACT THE DMRF

Dystonia Medical Research Foundation / One East Wacker Drive, Suite 1730, Chicago, Illinois 60601-1980
Phone: 312-755-0198 / Toll Free: 800-377-DYST (3978) / Fax: 312-803-0138
events@dystonia-foundation.org / www.dystonia-foundation.org / EIN#95-3378526

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