Adaptive snowboard cross champion and trailblazer named Youth Ambassador for Chuck’s Run for Dystonia

(TORONTO, ON) -- Snowboard cross gold medalist and Paralympian hopeful Spencer Clough, has been named Youth Ambassador for the 2013 Chuck’s 5 km Run/Walk taking place on June 2, 2013 and supporting research through the Dystonia Medical Research Foundation Canada (DMRFC).

Suffering from seizures and painful spasms due to myoclonus dystonia, 16 year-old Spencer, the first non-amputee snowboard cross competitor in Snowboard Ontario’s Adaptive Men’s category, “feels alive” when snowboarding down steep pitches throughout North America. His story is an inspiring tale of courage and tenacity on his part as well as his mother’s whose perseverance has been critical to both his diagnosis and pursuit of snowboarding. “Living with myoclonus dystonia is difficult - it can be exceptionally disabling and painful but Spencer’s approach to that challenge is so impressive,” says Diane Gillespie, Executive Director, DMRFC. “Not only does he courageously face the daily frustrations and discomfort associated with dystonia, but through perseverance and commitment, he’s become one of Canada’s top adaptive snowboard cross competitors. We’re thrilled to have such an exceptional individual representing the Run on behalf of young dystonia sufferers.”

Despite difficulty walking, talking and performing simple tasks, Spencer began snowboarding at the age of four. Since then, Spencer has become an accomplished snowboarder winning three gold medals this year alone in Ontario Snowboard Point Series events in the Adaptive Open Men’s category.

“Snowboard racing has an amazing impact on his psyche. It’s almost transformative, changing his life from a three out of 10 to a 25 out of 10,” says Kelly Yerxa, Spencer’s mother. Initially concerned for his safety, Yerxa now enthusiastically supports his passion. With help from Spencer’s coach, she succeeded in 2012 in having dystonia added to the Snowboard Ontario disability list for adaptive snowboarding. Diagnosed with dystonia only three years ago despite showing symptoms at 18 months of age, Spencer might still be living with an unknown ailment – and not receiving proper medical support – if it weren’t for his mother’s tenacity. “Getting a diagnosis was a lengthy and difficult journey. I was continually pushing back with medical professionals, telling them we needed an answer – that they had to do better. One reason Spencer is thrilled to be Youth Ambassador for Chuck’s 5 km Run/Walk is, by bringing attention to this disorder, he hopes other children won’t have to wait so long for help.”

Taking place on the scenic pathways and roads of Toronto’s High Park at 11 a.m. on Sunday June 2, 2013, Chuck’s Run is an important event focused on raising awareness and research dollars for dystonia. The Run is a great opportunity to support an important cause while enjoying fresh air and exercise in one of Toronto’s premier parks. “People like Spencer suffer terribly and their lives won’t be improved without research,” says Gillespie. “By joining us for two hours of fun, participants will make a big difference in the lives of  people with dystonia.”

Last update: Jan 2016