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Moms Champion Annual Day at Zoo to Bring Awareness to Rare Disorder

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7th Cincinnati Dystonia Zoo Walk Supports Research for a Cure

CINCINNATI - EntSun -- Melissa Phelps is on a mission to improve awareness of dystonia and find a cure for daughters Olivia (age 9) and Madison (age 6). The Phelps girls 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 complications affecting their respiratory and gastrointestinal systems. Phelps is a member of the Dystonia Medical Research Foundation (DMRF)'s Community Leadership Council. Phelps has traveled to Washington, DC as a legislative advocate and earned the DMRF's Douglas Kramer Young Advocacy Award.

Ann Falci's teenage daughter Marianne was diagnosed with dystonia at age 10 after four years of seeking answers. It began with a tremor in her hand when she was five. At her 10th birthday party, her hands tremored so much she could not peel the paper from a cupcake. By that time she was having tremors and loss of muscle control in her arm and legs. Once diagnosed with dystonia, a prescribed medication dramatically reduced her symptoms within a week. The Falci family have been members of the DMRF since 2015.

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Dystonia is a chronic, often disabling, neurological disorder marked by involuntary movements and abnormal postures of the body and limbs. Common dystonia symptoms include abnormal head and neck movements, excessive blinking, a breathy or strangled-sounding voice, hand cramps, and/or a twisted foot. Dystonia can affect a specific part of the body or many muscles all over the body.

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.

WHAT: Cincinnati is one of 13 cities to host a Dystonia Zoo Walk in 2019. Zoo Walks attract 5,000+ participants nationally. The purpose of this family-friendly day at the zoo is to raise awareness of dystonia and funds for medical research toward a cure. Fees are $25 for adults /$15 for children (12 and under) and include zoo admission, refreshments, and t-shirt. Proceeds benefit the Dystonia Medical Research Foundation. September is Dystonia Awareness Month.

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WHERE: Cincinnati Zoo & Botanical Garden, Peacock Pavilion, 3400 Vine St, Cincinnati, OH 45220.

WHEN: Saturday, September 21, 2019. Registration opens at 7:45am. Event begins at 9:00 am.

MORE INFO: Visit https://cincinnatidystoniazoowalk.swell.gives/ For more information about the Dystonia Medical Research Foundation, contact 312-755-0198 or dystonia@dystonia-foundation.org.

Jessica Feeley

Source: Dystonia Medical Research Foundation
Filed Under: Event

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