The Dystonia Medical Research Foundation (DMRF) will welcome supporters to a fun day at the Cleveland Metroparks Zoo for a chance to raise funds and awareness for dystonia on Saturday, October 5, 2013.
Online PR News – 10-September-2013 – Cleveland, OH – The Dystonia Medical Research Foundation (DMRF) will welcome supporters to a fun day at the Cleveland Metroparks Zoo for a chance to raise funds and awareness for dystonia on Saturday, October 5, 2013.
Organizer Karen Flanagan considers herself many things: a daughter, a sister, an aunt, and a friend. With her participation in the zoo walk, she is adding advocate to that list. Flanagan suffers from dystonia that affects her whole body, making everyday tasks such as tying shoes and lifting items challenging. When she was initially diagnosed with dystonia in her left hand, she had never heard of the disorder. Unfortunately, over the years, the symptoms progressed until her mobility and speech were significantly affected.
Flanagan’s final diagnosis was Rapid Onset Dystonia Parkinsonism (RPD), a unique and rare form of dystonia. It has been a major part of her life, but Flanagan hasn’t let the diagnosis define her. She decided to plan a zoo walk to bring a greater awareness of dystonia and is excited to make a difference in her community.
“The Cleveland Zoo is a great location,” she says. “It allows the walk to really be a family event. It is not a race, so there is no time limit. Besides, who doesn’t like the zoo? You can pack a snack and make a day of it.”
Often misdiagnosed as cerebral palsy or psychogenic disorder, dystonia is a neurological movement disorder that strikes children as young as eight and disables adults in the prime of their lives. Dystonia may affect multiple generations in a single family or occur sporadically with no family history. Symptoms include uncontrollable muscle spasms that twist the body into involuntary movements and awkward postures. Dystonia affects approximately 300,000 people in North America, making it the third most common movement disorder after essential tremor and Parkinson’s disease.
The Dystance4Dystonia Zoo Walk is a way to raise awareness and educate people in the Cleveland area about the challenges Karen and others face on a daily basis. “Awareness is just so important,” Flanagan says. “It allows others in the community know we are out here and they don’t have to go at this alone.”
With the support of friends and family, the walk will raise money for further research funded by the DMRF.
The Dystonia Medical Research Foundation (DMRF) is 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.