Dystonia: The Mysterious Disorder Impacting 50,000 Canadians
September is Dystonia Awareness Month
TORONTO, ON – August 31, 2020 – The Dystonia Medical Research Foundation (DMRF) Canada is pleased to announce that September is Dystonia Awareness Month in Canada.
Dystonia, the third most common movement disorder behind Essential Tremor and Parkinson's Disease, is a relatively unknown neurological disorder that is characterized by persistent or sporadic muscle contractions, causing abnormal repetitive movements or postures, at times resembling a tremor. Depending on the severity of the condition, patients are faced with varying degrees of disability or pain. Dystonia affects an estimated 50,000 people in Canada.
"Dystonia is a rare disorder with many different forms and varying treatment options, so building a general understanding of dystonia has been a challenge," says Stefanie Ince, Executive Director, DMRF Canada. "There is still no known cure and only limited treatments are available. We struggle with a general lack of awareness, not only within the general population, but also within the medical community – at times it can take years for a patient to get a proper diagnosis.”
This September, DMRF Canada has relaunched its Dystonia Moves Me awareness campaign to help raise awareness of the condition, and the various ways that it can impact patients and families. The campaign includes stories from real-life patients, as well as details on their personal experience with dystonia, and will be circulated in a variety of social and traditional media channels with an aim to spread awareness of the condition, and empower patients to advocate for themselves.
In addition to the Dystonia Moves Me awareness campaign, the Foundation has several online educational initiatives planned for September 2020. Five separate Webinar presentations will be taking place online throughout the month. Each of these Webinar events will be based on a specific topic and will bring patients face to face (virtually) with Movement Disorder Specialists from all over the country. To register, visit: www.dystoniacanada.org/mydystonia
“It's all about making sure the dystonia community has the tools and information they need to live their best lives with dystonia’’, says Ince. “DMRF Canada is committed to working with the community – including patients, families, volunteers and the medical community - to raise awareness, provide support, and educate patients. Our hope is that one day, people will know the word dystonia – and that we will have a cure.”
To learn more about dystonia, the campaign or Dystonia Awareness Month, visit: www.dystoniacanada.org.
About the Dystonia Medical Research Foundation (DMRF) Canada
The Dystonia Medical Research Foundation was founded in 1976 by Samuel and Frances Belzberg of Vancouver, after their daughter was diagnosed with generalized dystonia. The mission of the DMRF Canada is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families. DMRF Canada is a registered non-profit Canadian charity governed by a volunteer Board of Directors.
-END-
For more information, please contact: DMRF Canada, info@dystoniacanada.org 416-488-6974, toll free: (800) 361-8061