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Join the Dystonia Community to do Your Race – Your Way
Introducing: Freedom to Move: Run, Walk, and Wheel for Dystonia
Taking Place Across Canada June 1 – 30, 2021


TORONTO, (April 21, 2021) The 2021 Freedom to Move: Run, Walk and Wheel for Dystonia in memory of Chuck Saundercook will be held virtually with all proceeds benefitting the Dystonia Medical Research Foundation (DMRF) Canada. This year, participants across Canada can run, walk, or wheel at their own pace, at their own determined length, and on their own schedule from June 1–30, 2021.

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.

Due to the strong support of the dystonia community, last year’s event raised close to $70,000 for dystonia research and support programs, thanks to participation in 49 cities and 8 provinces. This year’s event will mark the second time the event will take place virtually across Canada. Although there is still a need to adhere to social distancing, organizers are confident that participants will continue the momentum from last year’s event into 2021.

This year’s Freedom to Move Ambassador is Paralympic swimmer - Shelby Newkirk. In 2019, Shelby won a silver medal in the 100 Backstroke in the Para Swimming World Championships – and that led her to a true dream come true: the opportunity to swim for the Canadian Paralympic Team in the upcoming Tokyo Paralympic Games.

“I am so honoured to be named the Ambassador for this year’s Freedom to Move event.  DMRF Canada has helped me so much over the years, and now I’m excited to give back.” Shelby shared. “One thing that I’ve come to realize over the past year is the value and importance of community. This event is a great way to raise money - and awareness, but to also show people that they are not alone and that we are all in this together.   I’m excited to work with the dystonia community from across Canada as we work together to reach our goal”.

Freedom to Move: Run, Walk, and Wheel is in memory of Chuck Saundercook, who was diagnosed with dystonia in 1972 at the age of 12. To date, the annual fundraiser has raised over one million dollars for DMRF Canada’s research and support programs and is the organization’s largest fundraiser. 

“Even though we cannot meet in person for this year’s event, the modification to a virtual event has allowed us to expand our reach across Canada, uniting the dystonia community coast-to-coast. It demonstrates that we can still come together virtually as a community and raise critical funds for dystonia research and support programs” shared Archana Castelino, National Director, DMRF Canada.  “We hope that the 2021 virtual event will exceed our expectations just like the 2020 event did”.  

DMRF Canada is the only organization dedicated to supporting the dystonia community in Canada. With just two full-time staff members, 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.

To find out more about the DMRF Canada, and to register for Freedom to Move, visit:


Archana Castelino
National Director, DMRF Canada

Last update: Oct 2022