Dystonia Awareness Month Successes – September 2019

Submitted by Intern on October 1, 2019 - 4:13pm

September marked Dystonia Awareness Month. Communities all over Canada supported our efforts to educate the public and raise awareness of dystonia by illuminating their local landmarks in blue and white as a show of solidarity with our cause.

DMRF Canada would like to extend a warm thank you to all of our supporters for helping us to raise awareness of dystonia this past September and for helping to make the month-long awareness campaign such a success.  

Here are some of the significant outcomes achieved during Dystonia Awareness Month in September 2019:

City of Toronto Mayor John Tory Proclaims September 2019 as Dystonia Awareness Month

In efforts to support education and awareness about dystonia and its effects on the 50 000 Canadians impacted by the disorder, John Tory, on behalf of Toronto City Council, made the proclamation that September 2019 is “Dystonia Awareness Month” in the city of Toronto. You can view the proclamation here on the city of Toronto website.

DMRF Canada's First Professionally Produced Video

DMRF Canada was thrilled to showcase its first-ever professionally produced Dystonia Awareness Video to highlight the impact of dystonia on individuals. The video is now playing on Youtube in closed captioning and has already been viewed 884 times since its debut at the beginning of September. Analytics have revealed that the video reached over 9000 people in the first month of its release!

Dystonia Awareness on Social Media - #DystoniaAwarenessMonth

Dystonia Awareness Month took over social media during the month of September. We'd like to thank all those who made the effort to post, pass and share photos they took of events they attended and sites they saw illuminated for Dystonia Awareness Month on Facebook,  Instagram, and Twitter. Because of this show of support, we saw an increased engagement of 1800 percent on Facebook, over 200 percent on Instagram, and over 125% on Twitter. DMRF Canada hopes its supporters continue to use social media to reach out to others to share as much information and raise as much awareness as you can about dystonia.

Distribution of Materials 

DMRF Canada Support Groups and local leaders around Canada are an important part of our efforts to provide mentorship, encouragement, and education for individuals with dystonia. During Dystonia Awareness Month, local chapters of DMRF Canada hosted ten support group meetings and events, including workshops and information sessions. Our local Ambassadors reached out to their communities by providing much-needed information to those seeking it. They promoted Dystonia Awareness Month by sharing content online through social media and by supplying educational materials and brochures offline during events, group meetings, and workshops.  

Local Ambassadors

DMRF Canada Ambassadors reached out to their communities by providing much-needed information to those seeking it. They promoted Dystonia Awareness Month by sharing content online through social media and by supplying educational materials and brochures offline during events, group meetings, and workshops.

Lighting up Landmarks for Dystonia

DMRF Canada was enthused to see 15 landmarks all across the country illuminate in blue and white in support of Dystonia Awareness Month. Famous landmarks included the CN Tower, Niagara Falls, and the High Level Bridge. Please check out the amazing pictures below.    

Media Coverage

Jackson Mooney, who created the Jackson Mooney Patient Grant in 2017, shared his story of managing dystonia with the Center for Brain Health at the University of British Columbia. You can read about his experience with different treatments and his efforts to make connections with others in the dystonia community here.

Winnipeg Wellness, both online and offline, discussed Dystonia Awareness Month in their newsletters and provided information about the Winnipeg Support Group.

The North Bay Nipissing profiled Florie Maeck of South River, Ontario and her challenges of living with dystonia during Dystonia Awareness Month. You can read about Maeck’s journey towards a dystonia diagnosis and the misunderstandings that surround the disorder here.

Executive Director Stefanie Ince was interviewed about the need for more dystonia awareness for NCRA radio station. Hear her interview here.

Casey Kidson and Her Triumphant Iron-Man Challenge

Casey Kidson, DMRF Canada’s Ambassador, was diagnosed with dystonia in 2003. However, she has not let the challenges of living with the disorder get in her way. During Dystonia Awareness Month and as part of her ‘Dyfying Dystonia’ Campaign, she launched and completed the 5KM Run, Walk and Wheel for Dystonia in Kingston, Ontario. She also completed her first Iron Man Triathlon in Chattanooga, Tennessee, USA. At 12:37 am on September 29, 2019, with just 17 seconds to spare off her 16.5 hour cut-off time, Casey Kidson officially became an Iron Man, victoriously completing all rounds of this huge milestone. In all of her athletic adventures, Casey is always ‘dyfying dystonia,' and we thank her for continuing to be such an inspiration. 

Research Projects

In the six months leading up to September,  DMRF Canada was happy to acknowledge during Dystonia Awareness Month that we had invested in 4 new research projects valued at over $250 000. Click here to learn more about our latest research projects.



City Hall in KIngston illuminated blue and white for dystonia.         City Hall in Lethbridge illuminated blue and white for dystonia.                The CN Tower in Toronto, Ontario illuminated blue and white for dystonia.

City Hall in Kingston, Ontario          City Hall in Lethbridge, Alberta       CN Tower in Toronto, Ontario


The High Level Bridge in Edmonton, Alberta illuminated blue and white for dystonia.                                              Supporters at the High Level Bridge in Edmonton, Alberta  

High Level Bridge in Edmonton, Alberta                Supporters visiting the High Level Bridge in Edmonton, Alberta