Running for Those Who Can’t at NYC Marathon

NEW YORK - Nov. 5, 2014 - PRLog -- A team of runners representing the Dystonia Medical Research Foundation (DMRF) and the DMRF Central Jersey Dystonia Support & Action Group competed Sunday in the TCS New York City Marathon  Thirteen runners from across the country volunteered their time, energy, and legs to raise research funds and awareness for dystonia, a neurological movement disorder. They ran in honor of family members and friends while supporters cheered them on from the sidelines.

Andrew Chang traveled from California to run in honor of co-worker Carrie Siu Butt who developed dystonia as a child and was able to compete in marathons herself following invasive brain surgery and dedicated training.

Christina Hoenisch ran in honor of Joanna Manusov, whose parents Janice and Len Nachbar started the Central Jersey Dystonia Support & Action Group following Joanna’s diagnosis of dystonia suddenly at age 21.

Brothers Rodrigo and Alejandro Gomez ran in honor of their mother Goya Rubio de Gomez who has lived with dystonia since 1990. This was Rodrigo’s 21st marathon and he has previously competed in races to support the DMRF.

Tony Sharp ran in honor of father-in-law Timothy Hornsby. In April, Tony and his family traveled to Washington, DC to meet with Members of Congress on behalf of the dystonia community to advocate for increased federal research funding and protecting access to treatment.

Dr. Ardeshir Khademi, a neurologist from Florida, competed in part to help improve visibility of dystonia among healthcare professionals.

Additional team members include Abraham Cohen, Hector Guerrero, Bethany Hornstein, David Malver, Emily Miller, Damaris Rosich-Schwartz, and Daniel Sacke—each of who were inspired by a personal connection to dystonia.

Supporters in the crowd represented dystonia support groups from New Jersey, Alabama, Rhode Island, and California as well as DMRF headquarters in Chicago.

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 neurological condition characterized by excessive, involuntary muscle contractions that result in twisting, repetitive movements and abnormal postures. It can strike children of virtually any age and disable adults in the prime of their lives. Dystonia may affect multiple generations in a single family or occur sporadically with no family history. 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. Individuals with dystonia must fight against their own bodies to walk, speak, write, or to simply sit still. Dystonia is frequently misdiagnosed. Prompt diagnosis is critical because research suggests that treatment outcomes improve with early intervention.

The $40,000 raised by the marathon team will fund cutting edge medical research toward improved dystonia treatments and a cure as well as programs that assist affected individuals and families.

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.