TORONTO, (June 1st, 2016) – Former NHL player Rem Murray is lending his star power to this year’s Chuck’s Run for Dystonia in an effort to shine a light on this debilitating movement disorder affecting approximately 50,000 Canadians. Not only is Rem participating in the 5km run but, diagnosed in 2004, he’s sharing his personal and painful dystonia story to help raise awareness and much needed research funds for this relatively unknown disorder.
“Hockey was a huge part of my life and Dystonia was a real game changer,” says Murray. “Not only did it alter the course of my career but it profoundly affected my everyday life. My neck was frozen over my left shoulder with no mobility whatsoever, I was unable to function normally for over a year.”
Raymond Murray otherwise known as Rem Murray, was drafted by the LA Kings and played with the New York Rangers, Nashville Predators but most notably the Edmonton Oilers for six seasons. At age 31, in the height of his career, Rem was asked to do a TV interview. During the course of the show Rem was unable to turn his head towards the camera. While he had been experiencing neck issues for a few months, this incident led him to the Emergency department at Toronto Western General hospital where he had the exceptional good fortune to encounter top movement disorder specialist, Dr.
Anthony Lang M.D. Dr. Lang quickly diagnosed Rem with Cervical Dystonia.
"It was quite fortuitous that I happened to be on call when Rem was brought to Toronto Western Emergency. Generally, we don't see patients with cervical dystonia in the ER and most physicians probably wouldn’t have known what to make of his complaints. Through this coincidence I was able to provide Rem with a very early diagnosis. Many patients aren't so lucky and go undiagnosed and therefore inappropriately treated for many years," says Dr. Lang
Dystonia, the third most common movement disorder behind Essential Tremor and Parkinson’s Disease, is a relatively unknown neurological disorder that causes uncontrolled muscle spasms, twisting and pain. Primary Dystonia, which affects an estimated 50,000 people in Canada describes a case in which the dystonia is the only neurological disorder that the person has. Primary dystonias include some genetic forms (such as DYT1 dystonia in which a gene has been identified) and forms for which a cause is not usually found. Secondary Dystonias affects close to 200,000 Canadians and is caused by traumas, concussions, drugs or by a number of diseases such as Parkinson's, Huntington's and Multiple Sclerosis.
“With no cure, limited treatments available and a general lack of awareness, the DMRF Canada is committed to raising the much needed funds for medical research, support groups and continued awareness campaigns,” said Stefanie Ince, Executive Director, Dystonia Medical Research Foundation Canada (DMRF). “Being a rare disorder with many different forms and varying treatment options, building a general understanding of dystonia can be a challenge. Since it’s inception 40 years ago, the DMRF Canada has made significant advancements, but there is still much work to be done.”
Although the diagnosis came quickly for Rem, he was forced to retire from his NHL career to begin his journey of managing life with dystonia. Two years later Rem returned to the NHL and went on to play in the Stanley Cup finals with the Edmonton Oilers. He tributes his comeback to botulinum toxin treatments and a demanding therapy routine with an Osteopath.
While not a death sentence, dystonia sufferers face a lifetime of physical pain, years of seeking the most effective treatment options, and for many the embarrassment and social alienation that comes with their condition impacting the quality of their life and their passions.
Joining Rem this year at the run is four-year-old Jesse Arrigo who suffered a brain injury in 2011 resulting in a diagnosis of secondary dystonia (full story attached). “Come on out to High Park bring your friends and family, enjoy the day, meet new people and most importantly support an amazing cause for a rare disorder that needs more attention,” says Rem Murray.
Event Details: Chuck’s 5KM Run/Walk for Dystonia:
Sunday June 5th, High Park Registration 9a.m. – 10:45a.m.
Race starts at 11 a.m.
Media photo/op/interview available upon request.
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