Join the Dystonia Community to do 5K – Your Way
Introducing: Chuck’s Virtual Walk, Run and Wheel
Taking Place Across Canada May 31 – June 30, 2020
TORONTO, (May 18, 2020) The 42nd annual Chuck’s Run, Walk and Wheel for Dystonia, which historically has taken place in High Park, Toronto, has been transformed to become a virtual event, open to participants across the country, in an effort to adhere to social distancing due to COVID-19. That means, starting May 31, participants across Canada will complete a 5K walk, run, or wheel course, anywhere - indoors or outdoors, and will have the entire month of June to do it!
Though the format has changed, organizers are confident that this event will be even bigger and better than ever. This year, our efforts to raise awareness of dystonia have been bolstered by the very generous support of Pattison Outdoor, who has generously donated over 500 signs across the country, to raise awareness of this special event, and to help raise awareness of the condition.
Chuck’s Virtual Run, Walk and Wheel is in honor of Chuck Saundercook, who was diagnosed with Dystonia in 1972 at the age of 12. To date, the annual fundraiser has raised close to one million dollars for DMRF Canada’s research and support programs and is the organizations largest fundraiser.
“Sadly, Dystonia is still not very well understood, and not very well known”, says Bill Saundercook, Chair of the DMRF Canada Board, and Chuck’s brother. “There are many different forms and varying treatment options, so building an understanding of Dystonia to the general public, and even within the medical community has been a challenge. We remain focused on the same goal we have had since the beginning: to find a better treatment and a cure for Dystonia. Our partnership with Pattison Outdoor will go a long way to help us to do that this year.”
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. Dystonia affects an estimated 50,000 people in Canada.
This year’s event ambassador is Canadian country music artist, Mr. Thomas Wade. Thomas began his career as the lead singer of the group Thomas Wade and Wayward. Between 1997 and 1999, Thomas Wade and Wayward received seven CCMA awards. The group was also nominated for three Juno Awards for Best Country Group or Duo in the late nineties.
However, by 2001, Thomas could no longer sing, he could barely talk, and he was given no hope for any kind of treatment or recovery. Finally, in 2006, Thomas was diagnosed with Oromandibular Dystonia, a form of Dystonia that forces contractions of the face, jaw, and tongue causing difficulty in opening and closing the mouth, making speech very difficult and singing impossible. “I’m proud to be named this year’s Chuck’s Virtual Run Ambassador”, says Thomas. “As someone who has lived with Dystonia for over 10 years, and someone who struggled for years to get a proper diagnosis, I am dedicated to the important task of raising awareness of the condition, and the fact that our patient community needs more support. On behalf of DMRF Canada, and the thousands of people who are living with Dystonia in Canada, I invite you to join me – anywhere in Canada – for this year’s Chuck’s Virtual Run, Walk and Wheel for Dystonia.”
DMRF Canada is the only organization dedicated to supporting the Dystonia community in Canada. With just one full time staff member, the organization is tremendously resourceful, working with dedicated volunteer board members, interns, volunteers, and impacted patients and families who are passionate about finding a cure.
“Chuck’s Virtual Run, Walk and Wheel provides real hope for a brighter future and a better life for individuals and their families struggling with Dystonia”, says Saundercook. And this year’s virtual event, means that now everyone in Canada can take part – and that is exactly what Chuck would have wanted.”
To find out more about the Dystonia Medical Research Foundation Canada, and to register for Chuck’s Virtual Run, visit: www.dystoniacanada.org/chucksrun
Media photo/op/interview with Thomas Wade or Bill Saundercook are available upon request.
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Executive Director, DMRF Canada