Dystonia Awareness Month Successes September 2020


Throughout the month of September, we celebrated Dystonia Awareness Month. Because of your support, both online and off, we were able to reach more people this year than ever before! We would like to extend a special thanks to all our supporters for helping to make our month-long campaign successful.

Read below about what we achieved during Dystonia Awareness Month in September 2020:

Illuminated Landmarks

Cities across Canada raised awareness of dystonia by lighting up 30 famous landmarks in various provinces blue and white to recognize Dystonia Awareness Month. Landmarks that participated included: the CN Tower, Calgary Tower, Niagara Falls, BC Place and the High-Level Bridge.

As well, the Lieutenant-Governor of Newfoundland and Labrador, Judy Foote, lit up her official residence, Government House, blue and white and shared a message of support on her Facebook page.

City of Toronto Mayor John Tory Proclaims September 2020 Dystonia Awareness Month

John Tory, on behalf of Toronto City Council, proclaimed September 2020 as “Dystonia Awareness Month.” You can view the proclamation here.

Dystonia Awareness on Social Media - #DystoniaAwarenessMonth

We would like to thank everyone for following, liking, sharing, and commenting on posts and helping to spread awareness on Facebook, Instagram and Twitter. Because of your support, our posts reached over 15 000 people online and helped to keep the community engaged.

Media Coverage

Dystonia patient and advocate, Jason Young of Cape Breton, Sydney, Nova Scotia was interviewed by The Giant Cape Breton 101.9 during Dystonia Awareness Month. Click here to listen.

DMRF Canada National Director, Archana Castelino, was interviewed by CJam Radio 99.1 FM. Click here to listen.

Thanks to Leaders in the Dystonia Community

Jason Young in Cape Breton, NS - Special thanks goes out to Jason Young for his efforts in reaching out to others in Cape Breton, Nova Scotia to raise the profile of dystonia in the Maritimes.

  • Mr. Jaime Battiste, Sydney—Victoria MP, posted about dystonia awareness on his Facebook page after Jason reached out to him.
  • Jason thanked former Sydney—Victoria MP, Mark Eyking for bringing the issue to the floor of the House of Commons. He also expressed appreciation to MLA Murray Ryan of Northside-Westmount for showing his support at the provincial level.Thanks to Jason, Miss World Canada, Naomi Colford, posted a message about Dystonia Awareness Month on her Facebook page.
  • Due to Jason’s efforts, Cape Breton Regional Municipality Mayor, Cecil Clarke, proclaimed September as “Dystonia Awareness Month.” You can watch the declaration here

Chantale Boivin in Montreal, QC - French Montreal Support Group Leader, Chantale, went above and beyond this year for Dystonia Awareness Month.

  • To help raise awareness, Chantale took on the challenge of posting every day in September on her Facebook page about dystonia. In addition to her 30 days of posts, Chantale also raised an incredible $1,260.00 through our Do it for Dystonia Campaign. If you would like to join this campaign, please click here. DMRF Canada would like to extend a special thank you to Chantale for acting as one of the moderators and hosts in our French #mydystonia&I webinar with Dr. Chouinard on September 30!

Casey Kidson in Kingston, ON - For Dystonia Awareness Month, Casey Kidson, a long-time advocate for dystonia patients, created a workout series, part of her dyfying dystonia campaign, modified to the needs of for dystonia patients. Watch the videos here .

  • Throughout the 30 days of September, Casey and Huafrid Billimoria of India together committed to run 10-km every day, updating everyone regularly on Facebook and donating money for the cause. The community was able to follow Casey and Huafrid's journey to 'dyfy dystonia' under the hashtag #Dystonia600.

“Dystonia Moves Me” Bingo Challenge

Dystonia Moves Me was a new addition to this year’s annual awareness campaign. The purpose of this initiative was to encourage volunteers to play the “Dystonia Moves Me” Bingo Challenge, which provided 16 opportunities to spread dystonia awareness. We’d like to congratulate the winner of the Bingo Challenge: Chantale Boivin!

#mydystonia&I Webinar Series

In September, we launched the #mdystonia & I Webinar Series for Dystonia Awareness Month. The aim of this series was to empower patients with knowledge to make informed decisions and assist patients in optimizing the outcome of their treatments. Thank you to Merz Therapeutics for their support of these webinars. If you'd like to watch a recording of any these webinars you can view them here. Merz Therapeutics also provided a Patient Guide for dystonia patients and dystonia awareness lanyards were made available during Dystonia Awareness Month.


City Hall Kingston     City Hall Lethbridge      High Level Bridge Edmonton Alberta                   

Government House Newfoundland and Labrador           The Big Fiddle Cape Breton Nova Scotia

Canada Place Sails of Light Vancouver BC     BC Place Stadium   


3D Toronto Sign     City Hall Toronto Towers    CN Tower




Last update: Jun 2023