Over 400 supporters are expected at this year’s Distance of Dytsonia Zoo Walk on Saturday September 13, 2014. Organizer Melissa Phelps planned the walk in honor of her two young daughters, both of whom suffer from generalized dystonia, a little known movement disorder. Last year the walk raised $10,000.
Olivia, now age three, was diagnosed at 16 months after several frustrating misdiagnoses, paving the way for the same diagnosis for her 8-month-old sister Madison, which came when she was just five months old. The girls have a rare neuromuscular disorder called tyrosine hydroxylase deficiency, the origin for the dystonia which twists the muscles in their legs and necks.
Numerous diseases and conditions may cause dystonia. and there are multiple types. Dystonia is a neurological movement disorder that causes sustained muscle contractions, resulting in twisting, repetitive movements or abnormal postures.
At the time of her daughters’ diagnosis, Melissa Phelps found and got involved with the DMRF. “In the Cincinnati area, there were no support groups, nor were there any outlets for me to contact locally, so I went researching for answers,” she says. She traveled to Washington, DC this May to serve as a legislative advocate for dystonia, and was presented with the Douglas Kramer Young Advocacy Award, which further inspired her passion to raise awareness in Ohio.
“I realized that people had no clue what dystonia was, or how it affected people, or how many people are affected all over,” she says. “I was once that person.”
At the time of her daughters’ diagnosis, Melissa Phelps found and got involved with the Dystonia Medical Research Foundation (DMRF). “I am doing this for my girls and everyone affected,” she explains. “Right now their dystonia comes and goes, but that could change. It’s so difficult when you can’t get answers.” The money raised at the walk will support 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 wellbeing of affected individuals and families
To join this years ZOO WALK – just go to:
Enter team name “TEAM RIVERHILLS”
Division of Neurology Dystonia Care:
Appt Line: (513) 612-1111