Disabled as Children, Runners with Dystonia Compete at TCS NYC Marathon

Team Represents Individuals Living with Little-Known but Surprisingly Common Brain Disorder
NEW YORK - Oct. 17, 2018 - PRLog -- Several participants at this year's TCS New York City Marathon will arrive at the starting line on November 4 against incredible odds. As children, three runners representing the Dystonia Medical Research Foundation (DMRF) often struggled to walk a single step due to this debilitating brain disorder. After years of misdiagnoses and failed treatment, they have since reclaimed their mobility and are running on behalf of the greater dystonia community. Team DMRF includes 10 runners, all with a personal connection to dystonia, who are participating in the race to raise research funds and public awareness.

Carrie Siu-Butt was diagnosed with dystonia at age 12. By her 30s, the simple act of walking was a painful, frustrating ordeal. As a last resort against losing the ability to walk completely, she underwent an invasive neurosurgical procedure called deep brain stimulation surgery. The results were so dramatic that within six weeks she was walking unassisted. She took her new found mobility and literally ran with it, since completing multiple 10Ks, half-marathons, and a marathon.

Beginning at age 14, Larry Dubill experienced uncontrollable attacks of involuntary jerking and shaking movements up to 100 times a day. As a musician, music teacher and athlete, he learned over the years to anticipate triggers for the attacks and avoid the triggers as much as possible. He was diagnosed with dystonia after noticing a dystonia awareness advertisement on the carton of milk in his refrigerator and consulting a neurologist.

For 32 years, Ginny Bryan lived in a body "with a mind of its own." She was born with myoclonus-dystonia, a movement disorder that causes uncontrollable jerking muscle contractions (myoclonus) and twisting, repetitive movements and awkward postures (dystonia). Two years ago she underwent deep brain stimulation which has drastically reduced her symptoms. This is her first marathon. Bryan is a member of the DMRF Community Leadership Council. Running to support Bryan are Amy Amendola and Heather Barskaya.

Additional members of Team DMRF include Jim Metherell and Jaime Dimitri who are running for Metherell's teenage son who has dystonia. Metherell is a member of the DMRF Community Leadership Council. Marissa Rozenfeld is running in honor of her brother with dystonia with Stephen Gebeloff and Carole Tordi.

Dystonia is a movement disorder marked by extreme muscle contractions that cause involuntary movements and abnormal postures of the body and limbs. Dystonia is more common than Huntington's disease, muscular dystrophy and Lou Gehrig's disease (ALS). Estimates suggest no fewer than 250,000 Americans are affected. Common signs include twisting or abnormal movements of the head and neck, excessive blinking, a breathy or choking voice, hand cramps or a twisted foot. There is not yet a cure.

The Dystonia Medical Research Foundation (DMRF) can be reached at 800-377-3978 or www.dystonia-foundation.org.

Debbie Durrer
Posted By:***@dystonia-foundation.org Email Verified
Tags:Dystonia, Marathon, New York
Location:New York City - New York - United States
Account Email Address Verified     Account Phone Number Verified     Disclaimer     Report Abuse

Like PRLog?
Click to Share