TORONTO, ON, October 31, 2023 — To address the dystonia community’s needs in a post-pandemic world, the Dystonia Medical Research Foundation (DMRF) Canada has developed the innovative Community Support and Education Program. The program’s launch renews dystonia patients’ opportunities to learn, connect, and unite with each other.
Utilizing DMRF Canada’s robust network of support groups across the country, the program connects members of the dystonia community through three impactful initiatives:
- Half-day in-person regional educational events for patients and their loved ones to meet dystonia specialists, discuss the latest research and treatments, and connect with one another.
- Shorter local in-person support group meetings that foster community engagement, information exchange, and patient connections.
- A National Virtual Patient Education and Support Session to ensure that individuals with dystonia can connect with others regardless of location or mobility.
“This program attends to the new nature of support,” says DMRF Canada National Director Archana Castelino. “Things have changed — in-person meetings dropped over 80% from pre-pandemic numbers but demand for virtual options for support has increased tenfold. Based on community feedback, we developed the program to facilitate at least one in-person meeting per year in some regions while still offering vital virtual support across the country.”
Dystonia, a neurological movement disorder that affects an estimated 50,000 Canadians, is characterized by persistent or sporadic muscle contractions that cause varying degrees of pain and disability depending on the condition’s severity. Dystonia is the third most common movement disorder behind essential tremor and Parkinson’s Disease but is relatively unknown and understudied in comparison.
Sponsoring partner AbbVie Corporation’s generous support at the highest level provides the dystonia community with opportunities to connect and learn from healthcare professionals and each other. “We’re proud to collaborate with DMRF Canada to bring the dystonia community together with such a meaningful post-pandemic initiative,” says Nancy Gagnon, Manager of Community Relations – Patient Experience, AbbVie Corporation.
The program’s impacts are being felt by dystonia patients across the country, with meetings already underway. Visit dystoniacanada.org/upcoming-events to learn more about upcoming events and their power to enhance lives in the dystonia community.
About Dystonia and DMRF Canada
Dystonia is a neurological condition 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.
DMRF 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.