Dystonia Awareness Month Successes September 2021

Throughout the month of September, we celebrated Dystonia Awareness Month. We had another successful campaign, reaching even more people this year because of your support.  

Read below about what was accomplished during Dystonia Awareness Month in September 2021: 

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, we were able to reach and engage with over 20,000 people online.  


Thank you to the businesses across Canada that showed their support during Dystonia Awareness Month.

  • Sydney Odditorium (Sydney, NS) – Co-owner Aneal Virick and staff encouraged their audiences to learn about dystonia through a giveaway of two blue pendants. They also posted various facts about dystonia throughout the month on their social media. 
  • Family HeirBlooms (Sydney, NS) - They have created a beautiful piece they call The Blue Spark, which will be on sale year-round with proceeds going to DMRF Canada to benefit dystonia research.
  • Chair Yoga with Jamie Crane - Yoga Instructor and MS Patient Jamie Crane has been offering free chair yoga classes for people with dystonia. The classes have been viewed by patients around the world, and she will continue to offer her chair yoga classes and videos to anyone with dystonia who would like to take them. Her videos can be found here
  • Thank you to Merz Therapeutics and Allergan: An AbbVie Company for their contributions to awareness on social media. 


The Cape Breton Regional Municipality (CBRM) declared an official proclamation on September 16th regarding Dystonia Awareness Month, performed by Councillors Steve Gillespie and Gord MacDonald and presided over by Mayor Amanda MacDougall. 

Also, Councillor Gillespie, Councillor MacDonald, and MP Jaime Battiste (Sydney—Victoria) posted on social media about dystonia. 

Media Coverage 

Dystonia patient and advocate, Jason Young of Cape Breton, Sydney, Nova Scotia was interviewed by CBC Radio’s Information Morning during Dystonia Awareness Month.  

  • HOT 101.9 (Sydney, NS) acknowledged Dystonia Awareness Month on their social media platform
  • 103.5 NEW COUNTRY (Sydney) acknowledged Dystonia Awareness Month on their social media platform
  • CTV Evening News (Halifax) included an acknowledgement along with short footage of Halifax City Hall going to commercial and then Halifax Commons when returning from commercial 


Members of the dystonia community took part in a number of activities aimed at raising awareness and support: 

  • 1, 2, Tri, 4 Dystonia – Canadian Paralympic swimmer Shelby Newkirk, FINA 2022 hopeful Sumbul Zafar, Ironman athlete Casey Kidson, and runner Jirome Marius De Castro organized and participated in a virtual relay, each successfully completing his or her leg of the relay 
  • The Greater Toronto Area Support Group set up an information booth at the Markham Farmer’s Market. A special thank you to Jacqueline Bell and Stephanie Alldred for spearheading this!
  • Dystonie-Partage – Thanks to the support of Merz Therapeutics, Dystonie-Partage hosted a series of virtual group exercise classes twice a week from September 8th to October 27th for anyone living with dystonia. Facilitated by the kinesiologists at NeuroMotrix, the classes are intended to improve the overall wellbeing of participants. Thank you to Chantale Boivin for organizing this! 
  • BC Brain Wellness Program Book Club Instructor Angela Warner wrote an article about dystonia for their blog, spreading awareness about the condition and encouraging others to learn more and get involved. You can read it here


As part of this year’s campaign, on each Thursday of the month, we recognized a member of the dystonia community on our social media for their accomplishments and efforts in raising awareness for dystonia. Thank you to our dystonia thrivers - Jennifer Ashton, Brenda Currey, Sumbul Zafar, Casey Kidson, and Jason Young for allowing us to share their stories. You can read their stories here

A Special Thanks to Jason Young in Cape Breton, NS   

We are grateful to our awareness committee member, Jason Young, for his continued efforts in reaching out to others in Cape Breton, Nova Scotia to raise the profile of dystonia in the Maritimes. 

Jason arranged a number of monument lightings in his hometown of Cape Breton and in Halifax (as well as encouraging members in his community to light up their own homes). The monuments included: 

  • The Big Fiddle 
  • CBRM City Hall 
  • CBRM Police Station 1 
  • CBRM FIre Station 1 
  • Old Sydney Society's "Sydney Museum" 
  • Alderney Landing (Dartmouth) 
  • Halifax City Hall 
  • Halifax Commons (Halifax) 
  • The Bluenose II (Lunenburg) 

He also hosted a Q&A with chiropractor Dr. Doug Mollon, who answered questions submitted by those living with dystonia. Jason was also the driving force behind all the above media and political coverage, and connections with businesses.  

Illuminated Landmarks 

Throughout the month, 16 landmarks across Canada raised awareness for dystonia by lighting up in blue and white in honour of Dystonia Awareness Month. 

In addition, the Lieutenant-Governor of Newfoundland and Labrador Judy Foote showed her support by lighting up her official residence Government House in blue and white. 


Thank you to all of our supporters for helping make this year’s campaign a success and for continuing to spread awareness about dystonia. 

                The Big Fiddle Cape Breton Nova Scotia


     High Level Bridge Edmonton Alberta 

   Government House Newfoundland and Labrador


City Hall Kingston  Canada Place Sails of Light Vancouver BC  




Last update: Jun 2023