DYSTONIA IS NOT A COUNTRY: It's The Third Most Common Movement Disorder


Dystonia Is not a Country: The Dystonia Community Comes Together to  Raise Funds and Awareness for Third Most Common Movement Disorder

TORONTO - (May 24, 2017) - On Sunday June 4th, 250 people will participate in The Dystonia Medical Research Foundation (DMRF) Canada's annual Chuck's Run, Walk and Wheel for Dystonia in High Park, Toronto. This year marks the 39th year this fundraising event will take place in honor of Chuck Saundercook, who was diagnosed with dystonia in 1972 at the age of 12.

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 affects an estimated 50,000 people in Canada.

"Dystonia is a rare disorder with many different forms and varying treatment options so building a general understanding of Dystonia has been a challenge, says Stefanie Ince, executive director, DMRF.  There is still no known cure and only limited treatments are available. We struggle with a general lack of awareness, not only within the general population, but also within the medical community.  The DMRF Canada is committed to raising the much-needed funds for medical research, support groups and continued awareness campaigns, but it is a challenging task."

The DMRF Canada is the only organization dedicated to supporting the Dystonia community in Canada. Chuck's Run for Dystonia is the organizations' largest fundraiser, and provides a great opportunity for the dystonia community to come together to raise funds for the much-needed research to find a cure for this devastating disorder.  Canadian philanthropist Sam Belzberg, and his wife Fran founded the DMRF over 40 years ago when their youngest daughter Cheri was diagnosed with Dystonia.  "We dreamed we'd find a cure a lot sooner. We had no idea 40 years later we'd still be at it."   

Each year DMRF Canada names an official ambassador to bring a face and a voice to the disorder.  This years' ambassador, Alicia McGill is truly a force in the community. Last year Alicia raised over $18,000 for Chuck's Run, breaking all previous fundraising records from any individual in the events' history. Due in part to lack of awareness of the disorder, even within the medical community, it took almost six years for Alicia's case to be properly identified.

"In 2015, I was finally diagnosed with this complex challenge, affecting much of my body and coordination," says McGill. "I support the DMRF Canada because when I had no one else to turn to, they were there to provide support and guidance. That assistance made such a difference when I was struggling with my diagnosis."

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.

A recent survey, conducted by the DMRF Canada included responses from over 600 Dystonia patients in Canada found that 41% of individuals with diagnosis were struggling with anxiety and depression*.   Despite her personal challenges with the disorder, Alicia isn't giving up.

"We clearly need more support, we need more funding, and we need more awareness," says McGill. "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. Bring your family and friends, and enjoy a day out at High Park and help us raise funds and awareness for an important cause."

To find out more about Dystonia and Chuck's Run, please visit: www.dystoniacanada.org/chucksrun

Event Details: Chuck's 5KM Run/Walk/Wheel for Dystonia:

Sunday June 4th, High Park 

Registration: 9 a.m. - 10:30 a.m.

Walk & Wheel starts - 10:45 a.m.

Run starts - 11:00 a.m.

Media photo/op/interview with Alicia McGill, Stefanie Ince or special guest former NHL hockey star Rem Murray who also suffers from Dystonia - all available upon request.



Jenny Mulkins




For information on The DMRF Canada Contact:

Stefanie Ince, Executive Director, DMRF Canada


Last update: Aug 2017