Throughout the month of September, we celebrated Dystonia Awareness Month. With your support, we had another successful campaign in 2023, reaching many thousands of people.
Let’s celebrate some of our 2023 highlights:
Dystonia Awareness Online
We would like to thank everyone for following, liking, sharing, and commenting on posts for #DystoniaAwarenessMonth on Facebook, Instagram and Twitter. Because of your support, we reached over 30,000 people through social media and our website – our most successful campaign to date!
We spread dystonia awareness around the world, reaching people from France, Australia, Belgium, India, China, the United Kingdom, Switzerland, the United States, and more!
As part of our campaign, on each #ThrivingThursday of the month we posted to social media about the strength possessed by all members of the dystonia community. Dystonia thrivers prove time and again that they can achieve incredible things as individuals and as a collective. Together, we are dystonia strong!
Media Coverage
- Dystonia Ambassador, Disability Advocate, and Dystonia Support Leader Neil Merovitch, who recently completed his PhD in physiology, was interviewed by CTV News Toronto and Patient Voice to share his experiences as a dystonia patient in the world of academia. Watch the excellent interview to hear Neil’s story as evidence of what dystonia thrivers can accomplish.
- DMRF Canada National Director Archana Castelino shared the importance of dystonia awareness for toronto.com.
Illuminated Landmarks
Landmarks across Canada raised awareness by lighting up in blue and white in honour of Dystonia Awareness Month. This year, we lit up 11 landmarks.
The monuments included:
- Niagara Falls
- CN Tower
- Science World Vancouver
- Calgary Tower
- Montreal’s Olympic Stadium
- BC Place
- Peace Bridge - the link between Fort Erie, ON, and Buffalo, NY – In collaboration with DMRF US
- The Big Fiddle – Sydney, NS
- Fortress Louisbourg - King’s Bastion
- Old Sydney Society – Sydney Museum
- Government House in St. John’s, Newfoundland
The Living Well with Dystonia Symposium
The Greater Vancouver Dystonia Support group hosted a day of dystonia education, information, and connection with a focus on well-being.
Two guest speakers provided excellent presentations:
- Movement disorder specialist Dr. Anish Kanungo
- Centre for Brain Health physiotherapist Sally-Anne Stelling
The symposium also provided education about adjunct therapies that can enhance and support well-being, such as:
- Art therapy
- Meditation and mindfulness
- UBC’s Brain Wellness program and other professional therapies
Special thanks to our Greater Vancouver Co-leaders Luisa and Robin for their outstanding efforts in planning this event.
Shining a Light on Dystonia in the Maritimes
We are grateful to awareness committee member Jason Young for his continued efforts in Cape Breton, Nova Scotia to raise the profile of dystonia in the Maritimes.
Jason arranged many initiatives, including:
- Monument lightings
- Regional advocacy
- Lightings of municipal buildings, police services, and fire services
Jason was the driving force behind media coverage and political advocacy on the east coast, as well as activities with local businesses and attractions. Jason’s initiative resulted in:
- Monument lightings
- Cape Breton citizens lighting their homes
- An official Dystonia Awareness Month proclamation by the Cape Breton Regional Municipality (CBRM) on September 12th, followed by a flag raising ceremony on September 16th. Thank you to Mayor Amanda MacDougall and councillors Steve Gillespie, Gordon MacDonald, and Cyril MacDonald for their generous advocacy and participation.
- On September 11th, Lieutenant Governor of Newfoundland and Labrador Judy M. Foote posted to social media about Dystonia Awareness Month and lit Government House in dystonia blue.
- The Sydney Odditorium changed their logo to dystonia blue and Co-owner Aneal Virick and staff had giveaways in support of dystonia awareness throughout the month.
- Captain Phil Watson of the legendary ship Bluenose II met with Jason to echo his support from past awareness month campaigns.
- Q103.5 New Country in Sydney, NS acknowledged Dystonia Awareness Month on their social media platform with pictures and a post.
Jason also reached out to the parents of pediatric dystonia patients to encourage and thank them for raising awareness by sharing their stories. With the parents’ permission, Jason recorded video messages for children with dystonia to lift their spirits and show them that they’re part of a strong, caring community.
Jason is a shining example of the dystonia community’s strength, resilience, and ability to act, drive change, and make a difference.
That power to act is also within you, and Jason has 10 tips to help you get a head start on next year’s campaign. It’s never too early to take action!
Thank you to all our supporters for making this year’s campaign a success and continuing to spread awareness about dystonia.
