Press Release (ePRNews.com) - CINCINNATI - Sep 06, 2017 - Mother of four Melissa Phelps is on a mission to improve awareness of dystonia and find a cure for daughters Olivia (age 7) and Madison (age 4). On Saturday, September 9, the Phelps family is hosting the 5th Annual Cincinnati Dystonia Zoo Walk at Cincinnati Zoo and Botanical Gardens (3400 Vine Street, Cincinnati OH). Cincinnati is one of a dozen cities across the country hosting a Dystonia Zoo Walk in 2017 to raise public awareness of this little-known, but surprisingly common, neurological disorder. Phelps’ event has cumulatively raised well over $100,000 in support of the Dystonia Medical Research Foundation (DMRF). September is Dystonia Awareness Month.
“There are days where my children can’t just be children and move freely to play and do the things children should be able to do.” Phelps explains. “They are trapped inside their own bodies.”
Dystonia is a chronic, often disabling, neurological disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. There are numerous manifestations of dystonia that impact people of all ages and backgrounds. 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 serious complications affecting their respiratory and gastrointestinal systems.
Phelps has traveled to Washington, DC as a legislative advocate for the dystonia community, earned the DMRF’s Douglas Kramer Young Advocacy Award, and is a member of the DMRF Community Leadership Council. Phelps founded the Cincinnati & Northern KY Dystonia Support Group to assist other families.
96.5 Rock will broadcast live from the event. Cost is $25 per adult/$15 for children, includes zoo admission, parking, t-shirt, refreshments, and entertainment including meet-and-greet with Disney and Marvel characters. The walk begins at 8:30 am. Tickets are available at www.dystonia-foundation.org/cincinnati-zoo-walk.
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. Source :
Dystonia Medical Research Foundation