September marked Dystonia Awareness Month, and thanks to your tremendous support—both in person and online—we achieved another successful campaign in 2024! We’re deeply grateful to our incredible community of supporters for making this possible.
Join us as we celebrate the remarkable achievements of our 2024 campaign!
Proclamation
First, we would like to extend our heartfelt gratitude to the City of Port Moody. The City Council has officially proclaimed September 2024 as Dystonia Awareness Month! This is an incredible honor, and we’re thrilled by the increased awareness this brings to dystonia. Please click here to view the Proclamation.
Dystonia Awareness Online
Raising awareness about dystonia is an important facet of our mission, we’re thrilled to share that this year through our website and our social media profiles, we reached over 40,000 people worldwide. We want to thank everyone who liked, commented, shared, followed, and visited our website. Because of your support we’re proud to say that 2024 is our most successful campaign to date!
Cervical Dystonia Awareness Campaign
This year, we proudly partnered with AbbVie Canada on a national PR campaign to highlight the impact of cervical dystonia across Canada. Through this initiative, we shared inspiring stories from Canadians living with cervical dystonia and their care partners. These incredible stories were from:
- Calgary, AB: Astrid Frauscher our Calgary Support Group Leader and Dr. Davide Martino, Ph.D. MD, Director of the Movement Disorders Program at the University of Calgary. They were Interviewed by CTV News Calgary on September 12, 2024. The interview reached an estimated 2,990,000 Albertan viewers through the broadcast, online video and article.
- Steinbach, MB: Vanessa David and Dr. Sean Udow, a neurologist with the Rady Faculty of Health Sciences. Interviewed by Global News on September 23rd, 2024.
- Healthing interviewed Vanessa David and Dr. Kerrie Schoffer, a movement disorder neurologist. Interview was published on October 31, 2024.
- Halifax, NS: Sarah Munro and Dr. Kerrie Schoffer, a movement disorder neurologist. Interviewed by Global News on September 20th. The interview reached an estimated 1,345,100 viewers and was syndicated on multiple Global News programs.
- Hamilton, ON: Laurie Bell a Hamilton Area Volunteer and Dr. Susan Fox, MB, ChB, PhD, Head of the Division of Neurology at Toronto's University Health Network. Interviewed by The Hamilton Spectator on September 18th, 2024.
- Montreal, QC: Chantale Boivin and Benoit Labbe, a physiotherapist in Quebec. Article published by Journal de Montreal on November 11th, 2024.
These stories have sparked a new wave of individuals reaching out to discuss cervical dystonia and seek more information. It's rewarding to see our message making an impact and helping to build a more informed community! To find out more about the campaign, you can visit the Cervical Dystonia Awareness Campaign page here.
In addition to the moving patient stories, two medical professionals, Dr. Susan Fox and Dr. Davide Martino shared further insights on cervical dystonia.
- Dr. Susan Fox’s interview with The Tonic aired to over 550,000 listeners, can be listened to here.
- Dr. Davide Martino’s interview with Nurse Maureen’s Health Show Podcast reached over 165,000 listeners and can be listened to here.
Living with Dystonia Ad
Published alongside Vanessa David's and Chantale Boivin's articles, DMRF Canada's 'Living with Dystonia' ad highlights Shelby Newkirk, a Paralympic swimmer who earned a bronze medal at the 2024 Paris Paralympics.
Illuminated Landmarks
Throughout the month, landmarks across Canada were lighting up blue for dystonia awareness. This year we lit up a total of 18 landmarks! These monuments included:
- City Hall in St. John's, Newfoundland and Labrador
City Hall in Moose Jaw, Saskatchewan
Civic Centre Clock Tower in Mississauga, Ontario
Confederation Building in St. John's, Newfoundland and Labrador
Montréal Tower in Montréal, Québec
BC Place in Vancouver, British Columbia
CN Tower in Toronto, Ontario
Niagara Falls in Niagara Falls, Ontario
City Hall in Lethbridge, Alberta
Avenir Centre and Downtown Place in Moncton, New Brunswick
Esplanade Riel Bridge and the Winnipeg Sign in Winnipeg, Manitoba
Science World in Vancouver, British Columbia
Ceremonial Entrance, Fountains & Waterfall, Legislative Assembly of British Columbia in Victoria, British Columbia
Peace Bridge in Fort Erie, Ontario/ Buffalo, New York
Fortress of Louisbourg National Historic Site, Cape Breton, Nova Scotia
Bluenose II, Lunenburg, Nova Scotia
Calgary Tower in Calgary, Alberta
Big Fiddle at Port of Sydney, Nova Scotia
Awareness Ambassadors
We extend our heartfelt gratitude to our incredible volunteer ambassadors across the country, who dedicate their time and effort to promote dystonia awareness and distribute education materials within their communities.
We'd like to begin by recognizing BJ Debruyn and Jennifer Lovell. BJ set up a #DystoniaAwareness booth at the Port Coquitlam Community Centre in British Columbia, engaging her local community in dystonia education. Jennifer, our Winnipeg Support Group Leader, was featured in the Winnipeg Free Press, where she shared insights on dystonia and highlighted the upcoming Winnipeg Symposium on October 19th, 2024. Since the interview, the Symposium gained over 50 attendees and was featured on the Senior Scope, CBC and CJOB radio. You can read her impactful interview here.
A special thank you goes to DMRF Canada Board Member, Casey Kidson-Reid for hosting a “Dystonia Blue Day” on September 10. Casey invited participants nationwide to wear blue and share awareness online using #DystoniaStrong.
Our sincere appreciation also goes to AbbVie for their support and advocacy #CervicalDystonia through awareness activities at their Montreal Office. Finally, a big thank you to our Cape Breton Island Support Leader, Jason Young for his continued efforts to raise awareness of dystonia in the Maritimes.
Your commitment makes a meaningful difference in advancing the cause and education communities across Canada. Thank you got being #DystoniaStrong!
Dystonia Events in Your Community
Throughout the month, members of the dystonia community united for six impactful events, including one of our National Virtual Support Meetings. We extend a special thanks to the Thompson/Okanagan Support Group, Calgary Support Group, Dystonie-Partage (Montreal), Greater Vancouver Support Group, and the Winnipeg Support Group for the time and dedication invested in organizing these gatherings. Thank you as well to everyone who participated and made these events meaningful.
Thank you to all of our supporters for helping make this year’s campaign a success and for continuing to spread awareness about dystonia.
