Family Hosts Day at the Zoo to Support Dystonia Research

On Saturday, September 27 Karen Flanagan and family members are partnering with the Dystonia Medical Research Foundation to host the 3rd Annual Dystance4Dystonia Zoo Walk to promote awareness of dystonia, a little-known neurological disorder. People are invited to spend a day among the animals and support urgently-needed medical research and programs to help families struggling with this little-known, often debilitating disease.

“I never heard of dystonia until I was diagnosed with it in my left hand nineteen years ago,” explains Karen. “Over the years my symptoms continued to develop, severely affecting my mobility and speech. Today, dystonia affects my whole body.”

Dystonia is a chronic disorder characterized by excessive, involuntary muscle contractions that result in twisting, repetitive movements as well as sustained abnormal postures. There are multiple forms of dystonia that impact people of all ages and backgrounds. Karen is affected by rapid-onset dystonia parkinsonism, a rare movement disorder that is characterized by an abrupt onset of symptoms that are frequently misdiagnosed. Symptoms can affect the face, limbs, and speech. Individuals may experience anxiety, depression, and seizures. Karen’s symptoms began at age 20.

“This affects every moment of my daily life, preventing me from living my life the way I thought I would,” she explains. “I have involuntary muscle movements along with Parkinson’s symptoms often referred to as ‘freezing.’ I am unable to move when this occurs.”

Karen created this event with the support of mother Jane Ann Flanagan and aunt Gale Flanagan. Dystance4Dystonia Zoo Walks have been replicated in cities throughout the country. Donations will fund cutting edge medical research toward improved dystonia treatments and a cure as well as programs to assist affected individuals and families.

The Dystance4Dystonia Cleveland Zoo Wolk will take place Saturday, September 27 at Cleveland Metroparks Zoo. Cost is $25 per adult; children under 11 are $15. Fee includes all day admission to the zoo, rainforest, t-shirt, and refreshments. Registration begins at 7:45 AM, and the event begins at 9:00 AM. Additional details may be found at: http://www.dystonia-foundation.org/clevelandzoowalk

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.