The Dystonia Medical Research Foundation (DMRF) will combine a fun day at the Cincinnati Zoo with the chance to raise funds and awareness for dystonia Saturday, September 14, 2013.
Online PR News – 22-August-2013 – Cincinnati, OH – The Dystonia Medical Research Foundation (DMRF) will combine a fun day at the Cincinnati Zoo with the chance to raise funds and awareness for dystonia on Saturday, September 14, 2013. Organizer Melissa Phelps hopes to raise awareness close to home, motivated by her two young daughters, both of who suffer from generalized dystonia – a little known movement disorder.
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 origins for the dystonia which twists the muscles in their legs and necks.
“They have never treated a child with my girls’ diagnosis at the Cincinnati Children’s Medical Center, which means they’re learning from them and treating them at the same time,” says Melissa.
It was at the time of diagnosis that Melissa 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 legistlative 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.”
The Dystance4Dystonia Zoo Walk is a way to raise awareness and reach people in her area about the challenges her daughters face in upcoming years. “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.” With the support of friends, family, and her daughters’ doctors, the walk will raise money for further research funded by the DMRF.
Everyday life is challenging for her young daughters, and it’s hard to know the future outcome of their disability levels. The uncertainty is what drives Melissa’s efforts, not only for her daughters’ futures, but also for the rest of the dystonia community. “In the next few years, I have hope that we’re on our way to a cure.”
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.