Running for Those Who Can’t at NYC Marathon

Aug. 3, 2015 - PRLog -- On November 1st a team of 10 runners from north central Pennsylvania will represent the Dystonia Medical Research Foundation at the prestigious TCS New York City Marathon. They will join runners from across the country to volunteer their time, energy, and legs to raise research funds and awareness for dystonia, a neurological movement disorder. The north central PA team is a serendipitous group of friends and acquaintances who are banding together on behalf of individuals and families impacted by this little-know but surprisingly common disorder.

Elizabeth Moores agreed to take part in the NYC marathon after learning about dystonia and wanting to help. Ironically, a family member has since been diagnosed, making the race all the more important and personal. “I am beyond thrilled for the opportunity to run in NYC in November,” she says. “I am taking my responsibility of raising awareness and funds seriously, and I am honored to represent the Dystonia Medical Research Foundation in this capacity.”

Tony Sharp is running in honor of his father-in-law who, in an unexpected twist, recently learned he had been misdiagnosed with dystonia in 2008. Tony’s wife Rebecca had worked with her parents to start a dystonia support group, authored a dystonia awareness blog, and the family has traveled to Washington, DC to advocate on behalf of the dystonia community on Capitol Hill. Despite the revised diagnosis, the family remains committed to the dystonia community.

Additional team members include Brooke Anstadt, Erin Bennett, Michael Bennett, Jennifer DeVore, Emily Miller, Edgar Pry, Tina Remsnyder, and Lisa Walter. Each has become unexpected champions for a population of patients largely unknown to the public—something they hope to help change by taking this opportunity to bring greater visibility to dystonia and its devastating impact.

For individuals with dystonia, it can feel like a marathon just to get through the day due to the pain and challenge of living with a chronic, debilitating disorder.  Dystonia is a chronic, often disabling, movement disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. There are numerous subtypes that affect people of all ages and backgrounds. Common signs can include an inability to control the position of the head, excessive blinking, a breathy or choking voice, hand cramps, and/or a dragging foot. Dystonia patients must fight against their own bodies to walk, speak, write, or simply sit still.

The team’s goal is to raise $25,000 to fund cutting edge medical research toward improved dystonia treatments and a cure as well as programs that assist affected individuals and families. Donations toward the team’s goal can be made at: https://www.dystonia-foundation.org/PArunners

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.