Date (Toronto, ON) – Unsung hero, thirty-one year old Franco Mazzella suffers constant pain caused by Myoclonus Dystonia, a rare form of dystonia, a debilitating neurological disorder that he has endured for more than half his life. A shining example of bravery in the face of adversity, his positive spirit carries on despite severe physical limitations. Franco has been chosen as the 2014 Ambassador for Chuck’s 5 km Run/Walk for Dystonia, taking place in High Park on Sunday, June 1. With no cure and few treatments available, primary and secondary dystonias affect the lives of more than 250,000 Canadians. “Finding new treatments for dystonia is absolutely critical,” says Diane Gillespie, Executive Director of the Dystonia Medical Research Foundation Canada (DMRFC). “Like so many other dystonia sufferers, Franco is a hero for enduring the pain and discomfort caused by dystonia. Maintaining a bright and optimistic outlook, with the support of a loving family is what helps him through each day, but what he really needs are new and better treatments.” A difficult disorder to identify, Franco, like so many others with dystonia, endured a seven-year long “diagnostic odyssey,” before finally being diagnosed in 2008. After suffering for three more years with little to no medications to relive his constant pain, Franco and his family pursued the only treatment available to him - deep brain stimulation. While the surgery improved his symptoms, Franco still braves pain, muscle dysfunction and dystonic storms, which are described as intense with prolonged periods of muscle spasms. The toll it is taking on his life and his family’s is massive. “Research is the key to making advances in diagnosis and treatment for dystonia”, says Dr. Dennis Bulman, Senior Scientist at the Children’s Hospital of Eastern Ontario who specializes in myoclonus dystonia research. “While important progress is being made and new treatments are not that far off, we must continue to push forward, raising funds, through events like Chuck’s Run, which are critical to the development of new treatments.” Despite his severe physical impairments and discomfort, Franco plans to take part in the 9th annual Chuck’s Run for Dystonia in High Park on Sunday, June 1st, and he hopes to motivate and inspire others to join him in his fight to live a pain free life. Event Details: Chuck’s 5KM Run/Walk for Dystonia June 1st, High Park - 10:30 a.m. Contact: Alison Cook - 647-400-6743 Jenny Mulkins - 416-801-1014
