Community Rallies around Local Family Impacted by Dystonia

CINCINNATI - Sept. 16, 2015 - PRLog -- On Saturday September 12, over 700 people, representing 40 teams, gathered at Cincinnati Zoo for the 3rd Annual Dystance4Dystonia Zoo Walk. In communities across the country, Zoo Walks are raising public awareness and research funds for dystonia, a little-known neurological disorder. Donations continue to come in for this year’s event, and current calculations indicate Cincinnati Zoo Walks have raised over $100,000 to benefit the Dystonia Medical Research Foundation (DMRF).

Mother of four Melissa Phelps organized the Zoo Walk; two of her four children are diagnosed with dystonia. “I hope the people who attended the walk came away with a sense of community. People weren’t only there to support the team name on their t-shirts, but to support everyone who has dystonia. We were there as one, and everyone who attended is helping to find a cure and build public awareness.”

The Zoo Walk was preceded by “Go Blue for Dystonia Day” in Gallatin, Kentucky and surrounding counties on September 10. Residents showed support for the Phelps children and dystonia awareness by wearing blue and decorating homes and businesses in the signature dystonia awareness color.

“It’s been amazing,” says Phelps. “The community came together to show support for my girls. I had tears in my eyes walking through town and seeing all the blue. We educated hundreds of people who didn’t realize what dystonia is.”

Dystonia is a chronic, often disabling, movement disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. It is the third most common movement disorder. There are numerous manifestations of dystonia that impact people of all ages and backgrounds. Phelps’ daughters were born with tyrosine hydroxylase deficiency, a rare metabolic disease that causes generalized dystonia. They experience painful muscle spasms in their limbs, hands, feet, neck, face, and tongue as well as serious complications affecting their respiratory and gastrointestinal systems.

Through the Dystonia Medical Research Foundation, Phelps was able to learn about dystonia and connect with other parents for coping support. She has traveled to Washington, DC as a legislative advocate for the dystonia community and earned the Foundation’s Douglas Kramer Young Advocacy Award. Phelps founded the Cincinnati & Northern KY Dystonia Support Group to assist other affected families.

The Dystonia Medical Research Foundation (www.dystonia-foundation.org) 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.