Runners with Dystonia Compete at TCS NYC Marathon

11/7/18

Several members of Team DMRF at the 2018 TCS New York City Marathon once struggled to walk a single step. Disabled by dystonia symptoms as children, and after years of misdiagnoses and failed treatment, they since reclaimed their mobility and ran on behalf of the greater dystonia community. Team DMRF included 10 runners, all with a personal connection to dystonia, who participated 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 deep brain stimulation surgery, an invasive neurosurgical procedure. 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 now two marathons.

For 32 years, Ginny Bryan lived in a body “with a mind of its own.” She was born with a myoclonus-dystonia, a rare 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 was her first marathon. Bryan is a member of the DMRF Community Leadership Council. Running to support Bryan were Amy Amendola and Heather Barskaya.

“The TCS NYC Marathon gave me an incredible opportunity,” said Bryan, “to raise monetary funds for the mission of the DMRF and to raise awareness about dystonia. For each step I took during the marathon, with a smile that just kept getting bigger, it was with gratitude in my heart for every helper, my family and friends, and everyone who supported and loved me so that I was able to run a marathon after 37 years with myoclonus- dystonia, and a few years after bilateral DBS.”

Beginning at age 14, Larry Dubill experienced uncontrollable attacks of involuntary jerking and shaking movements up to 100 times a day. As a performing 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 ultimately diagnosed with dystonia after noticing a dystonia awareness advertisement on the carton of milk in his refrigerator and consulting a movement disorders neurologist. Dubill was unfortunately unable to participate in the marathon for health reasons, but trained and fundraised to support DMRF.  

Additional members of Team DMRF include Jim Metherell and Jaime Dimitri who ran on behalf of Metherell’s teenage son who has dystonia. Metherell is a member of the DMRF Community Leadership Council. Marissa Rozenfeld ran in honor of her brother with dystonia along with uncle Stephen Gebeloff and family friend Carole Tordi.

Dystonia is a disabling 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). Conservative 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) 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.

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