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As DMRF Canada marks 50 years, we recognize five decades of work to advance dystonia research, support individuals and families, and build a stronger community across Canada. This work has been made possible by volunteers, donors, healthcare professionals, researchers, partners, and people living with or affected by dystonia. There is still time to make an impact this year by raising awareness, supporting research, volunteering, fundraising, attending events, or sharing your story. Every action helps improve the lives of Canadians living with dystonia and brings us closer to better treatments and, ultimately, a cure. |
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| The DMRF USA recently hosted an educational webinar highlighting the work of the Dystonia Coalition*, an international network of more than 50 research centres advancing dystonia research. Dr. Hyder "Buz" Jinnah and Dr. Joel Perlmutter shared how the Coalition has enrolled over 4,000 participants, developed one of the world's largest dystonia research databases, and contributed to more than 229 scientific publications. They also emphasized the importance of patient participation, collaboration, and data sharing in accelerating research and improving diagnosis, treatment, and care for people living with dystonia. Click here to watch the recording. Our thanks to the DMRF USA for allowing us to share this resource. *The Dystonia Coalition is supported by funding from many sources, including patient advocacy groups (PAGs), industry partners, professional societies, and other organizations. The majority of its funding is provided by the U.S. National Institutes of Health (NIH). |
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New studies published in Dystonia, the leading open-access scientific journal dedicated to dystonia research. Here are a few recent publications of interest: Embouchure Dystonia and Musicians – Researchers explored how musicians with embouchure dystonia understand and cope with their condition, emphasizing the importance of early diagnosis, patient education, and supportive care. Click here to read full article. Vibro-Tactile Stimulation for Focal Dystonia – A systematic review found that vibro-tactile stimulation, a non-invasive therapy, may help reduce muscle spasms, improve movement, and relieve pain in some people with focal dystonia. Click here to read full article. Understanding Vocal Changes in Dystonia – A new preclinical study examined vocal changes in a mouse model of dystonia, providing insights into the brain mechanisms involved in speech and voice disorders associated with dystonia. Click here to read full article. Thank you to the DMRF USA for highlighting these studies. |
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Registration is now open for the Dystonia GTHA Patient Support Health Fair: 50 Years of Community, taking place on Sunday, October 25, 2026, at the BMO Education & Conference Centre in Toronto. Hosted by the Greater Toronto Area Dystonia Support Group in partnership with DMRF Canada, this recognizes 50 years of community commitment. |
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A heartfelt thank you to everyone who participated in Freedom to Move: Run, Walk, and Wheel 2026! Together, 138 participants from across Canada united in support of the more than 50,000 Canadians living with dystonia. Community events took place in Winnipeg, Toronto, Kingston, and Calgary, with participants also joining virtually throughout June. Thanks to your incredible generosity, we have raised more than $60,000 to date! Every dollar supports dystonia research, clinical fellowships, education, advocacy, and programs that improve the lives of individuals and families affected by dystonia. A special thank you to our Freedom to Move Ambassador, Laurence Guénette-Rochon, and to our partners, sponsors, volunteers, and donors for making this campaign a success. Together, we are moving closer to better treatments and, ultimately, a cure. Stay tuned for further details about the event in our Fall DMRF Canada Report. |
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Since July 2024, DMRF Canada's Ontario Charitable Gaming partnerships have raised more than $100,000 to support dystonia research, clinical fellowships, education, advocacy, and patient support programs. We are in desperate need of more volunteers and risk losing this vital source of funding without more support. No experience is required, and all training is provided. If you're in the Greater Toronto Area, we'd love to have you join our volunteer team—or share this opportunity with family and friends who may be interested. We are currently onboarding volunteers for Richmond Hill Bingo World & Gaming. Volunteer training and onboarding for Delta Bingo & Gaming Etobicoke will begin later this year. Travel stipends and volunteer honorariums are available for returning volunteers. |
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September is Dystonia Awareness Month—a time to raise awareness, share stories, and advocate for the more than 50,000 Canadians living with dystonia. You can make a difference by wearing blue, sharing educational resources or your personal story on social media, participating in local awareness events, displaying awareness materials, and becoming a Dystonia Awareness Ambassador. Every conversation, post, and act of support helps increase understanding, reduce stigma, and connect more people to the information and resources they need. Visit www.dystoniacanada.org/dystoniaawarenessmonth. |
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| This year, as DMRF Canada marks 50 years of supporting the dystonia community, we invite you to Do It for Dystonia. Turn a hobby, challenge, celebration, or special occasion into a meaningful fundraiser that raises awareness and supports Canadians affected by dystonia. Whether you host an activity, try something new, or dedicate your birthday to dystonia support, every effort helps fund research, education, advocacy, and support programs. Set your goal, create your page, share your story, and inspire others to get involved. Click to here learn more and start your fundraiser. |
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Support the Greater Toronto Area Dystonia Support Group FundDrive by donating your gently used household items. Through this partnership with Value Village, every donation helps generate funding for dystonia research, education, advocacy, and support programs. Unable to drop off your items? Pickup arrangements are available. We're also seeking volunteer drivers to assist with collecting donations. The collection runs now through September 20, 2026. |
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DMRF Canada is hosting a virtual roundtable for volunteers and community members interested in strengthening local fundraising efforts for dystonia across the country on July 29th at 6:00 PM Eastern Time. This informal session will feature practical insights from volunteers with experience in employee giving, workplace campaigns, business sponsorships, and peer fundraising. Participants will hear what has worked well, lessons learned, and tips that can be adapted locally, with time for questions and discussion. Click here to learn more and register. |
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Stay connected with the dystonia community through our support group meetings and educational programs. Connect, share experiences, and learn from others who understand.
Be sure to watch for future newsletters and announcements as we continue to expand our support programs and add new events throughout the year. |
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Follow DMRF Canada on our social media platforms |
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@DMRFC |
@dystonia_canada |
@Dystonia Medical Research Foundation Canada |
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Please visit our website at https://dystoniacanada.org
Donate to our cause at https://dystoniacanada.org/donateonline
Our mailing address is:
Dystonia Medical Research Foundation Canada
PO Box 1009 Stn Toronto Dom
Toronto ON M5K 1P2 Canada |
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