Join the Dystonia Community: Walk, Run and Wheel for a Cure:
on
Sunday June 2, 2019, High Park, Toronto
TORONTO, On Sunday, June 2, 2019 the dystonia community will come together for the Dystonia Medical Research Foundation (DMRF) Canada’s 41st annual Chuck’s Run, Walk and Wheel for Dystonia in High Park, Toronto. This event 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.
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.
“Dystonia is still not very well understood, with many different forms and varying treatment options, so building an understanding of dystonia has been a challenge,” says Bill Saundercook, Chair of the DMRF Canada Board, and Chuck’s brother. “Watching Chuck’s life deteriorate as a result of his dystonia was heart-breaking and life changing, not only for Chuck but for our entire family. Now, more than 40 years after Chuck’s death, I remain focused on the same goal we have had since the beginning: to find a better treatment and a cure for dystonia.”
This year’s annual event ambassador is Sarah-Anne Martin, a mother who lives with cervical dystonia, which also affects her arms and legs. , Not being able to hold her daughter as a baby was just one of the difficult ways Sarah-Anne’s dystonia has impacted her experience as a young Mother suffering from dystoniaLiving for years with the physical pain of dystonia, Sarah Anne also suffered from the emotional and psychological pain the disorder can cause, including feelings of anxiety and isolation. Never having attended Chuck’s Run for Dystonia, Sarah-Anne and her family decided to try it out in 2018, a decision that has transformed her outlook on the future and has connected her to a community dedicated to raise awareness and find a cure.
“I’m so pleased and proud to be named this year’s Chuck’s Run Ambassador along with my four-year old daughter Brelynn. As someone who has lived with dystonia for over 10 years, I understand how important raising awareness of the condition is, and how desperately our community needs better support. On behalf of the staff and volunteers at DMRF, and the thousands of people who are living with dystonia in Canada, I invite you to join my family and I at this year’s Chuck’s Run, Walk and Wheel for Dystonia on June 2, 2019.”
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 their quality of their life.
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 interns, volunteers, and impacted patients and families who are passionate about finding a cure.
“We continue to work to find more support, more funding, and greater awareness,” says Saundercook. “Chuck’s Run, Walk and Wheel is not only a community event, but to many in the dystonia community, it provides real hope for a brighter future and a better life for individuals and their families struggling with dystonia. That is what Chuck’s Run for dystonia is about.”
To register, visit: www.dystoniacanada.org/chucksrun
To find out more about Dystonia and Chuck’s Run, please visit: www.dystoniacanada.org/chucksrun
Media photo/op/interview with Sarah-Anne Martin or Bill Saundercook are available upon request.
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Contact: Jenny Mulkins
Publicist
Jenny.mulkins@sympatico.ca
416-801-1014