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Thank you for your unwavering support over the past half year. With your help, we’ve held impactful events, raised awareness, and advanced our mission to support those affected by dystonia. Let's continue to build on this momentum, fostering hope and making a difference together.
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Table of Contents
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Thank you for making Freedom to Move: Run, Walk, and Wheel for Dystonia a success. Your involvement has significantly impacted over 50,000 Canadians living with dystonia. Together, we raised over $50,000! These funds will help support vital dystonia research and essential programs through initiatives like the DMRF Canada Clinical and Research Fellowship.
We’d love your feedback! Complete our short survey and help us improve Freedom to Move for next year. |
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Explore recent developments in dystonia research, including key findings and global collaborations that are advancing scientific progress. Brief Research Report: Functional connectivity of brain areas related to social cognition and anxiety in cervical dystonia (Published June 2, 2025) Workshop on Dystonia Penetrance – The DMRF (USA) organized a scientific workshop on the Mechanisms of Reduced Penetrance in Dystonia in Helsinki, Finland on June 19-21. Dystonia penetrance refers to the percentage of individuals with a specific genetic mutation who develop dystonia. The workshop was co-chaired by Christine Klein, MD from the University of Lübeck and Christopher Pearson, PhD from the University of Toronto and included leading clinicians and researchers in the field. The goal of the meeting was to deepen scientists’ understanding of the causes and mechanisms of reduced penetrance in dystonia, as well as evaluate existing and identify new research strategies. The meeting faculty will publish a position paper addressing the most critical aspects of reduced penetrance, aiming to guide future research strategies. (Shared with permission from DMRF USA) We thank the DMRF for their leadership in organizing such workshops that help shape the future of dystonia research. Click here to stay updated through our Latest Research News section. |
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Our mission thrives on the power of our community. As we face an increasing need for support, we need to expand our efforts. Help us turn our efforts into success by connecting us with organizations that may be interested in supporting our work through sponsorships, grants, donations, or employee giving programs. Visit here to view
the list of mission-aligned organizations we plan to approach.
We’re preparing submissions to potential funders. If you are connected to any individuals or organizations on this list, please let us know before August 10 at info@dystoniacanada.org . Thank you for your support! |
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We're excited to announce Dr. Lindsey Vogt as the recipient of the 2025-2027 DMRF Canada Clinical and Research Fellowship — an important investment in expanding care and research for children, youth and adults affected by dystonia. This fellowship is made possible through the generous support of Merz Therapeutics and funding from the Ontario Charitable Gaming Association’s Charitable Gaming Community Good program with Bingo World and Gaming Richmond Hill. A key component of Dr. Vogt’s training includes participation in the Pediatric-to-Adult Movement Disorders Transition Clinic at SickKids Hospital. To read more, click here. This life-changing fellowship is possible because of our incredible community of volunteers. We need more volunteers to help raise the funds that support this fellowship and other vital programs. If you're interested in making a difference, please consider volunteering through our Bingo program. |
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Are you a resident of the Greater Toronto Area? Looking to give back and make a real impact in your community? DMRF Canada is excited to partner with Bingo World and Gaming Richmond Hill for an ongoing fundraising initiative, and we need your help! By volunteering just a few hours of your time, you’ll directly support our mission to fund research, improve treatments, and move closer to a cure for dystonia. Since July 2024, our partnership has helped raise nearly $70,000—all thanks to dedicated volunteers like you. Your time can make a difference. Just two hours at a bingo shift contributes to meaningful progress in dystonia research and support programs. For more information and to sign up, click here. Join us. Help drive change, one Bingo event at a time. |
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September marks Dystonia Awareness Month, and we welcome everyone to join our mission to promote public awareness of dystonia |
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Physiotherapists Working with Dystonia Patients: Please click here to find an updated list of dystonia trained physiotherapists and clinics. Pediatric Neurologists in Canada: Please click here for a list of pediatric neurologists across Canada who may be familiar with dystonia. |
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Lace Up, Warm Up, Show Up! This October 18, members of our Greater Toronto Area Dystonia Support Group are stepping up for something bigger than a finish line—they’re taking on the 5K Charity Challenge to raise awareness and funds for dystonia. This is more than just a run. It is a powerful moment of visibility at one of Toronto’s largest events, drawing over 30,000 participants and 150,000 spectators. To participate, runners must complete the 5K—either in person or virtually. Have a colleague, friend or family member who loves running? Why not encourage them to run and fundraise for dystonia? Every dollar raised goes toward critical research, as well as programs that bring care, hope, and connection to the dystonia community. Whether you run, walk, or cheer from the sidelines, your support matters. Click here for full event details — registration and donation links will be added soon. If you are unable to participate, please consider donating or share the message to support our runners. |
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DMRF Canada support group leaders from Cape Breton, NS and Toronto, ON are co-hosting our first-ever online support group meeting for individuals living with Paroxysmal Dyskinesia: Paroxysmal Dyskinesia Dystonia Support Meeting - August 2, 2025 Date: August 2, 2025 Time: 2:00 PM – 3:00 PM Eastern Time (check your local time zone) Please click here to register. Connect with support groups around the country by location or by a specific type of dystonia. Please click here to find a support contact person.
Upcoming Support Group Meetings and Events:
Dystonia Support & Awareness - Thompson/Okanagan — Bi-Weekly Meetings
Dystonia Support & Awareness - Vancouver Island — Bi-Weekly Meetings Greater Toronto Virtual Support Group Meeting — August 10, 2025 Greater Toronto Support Group FundDrive Event — until September 7, 2025 ONLINE Neurologic Music Therapy — September 11, 2025 National Virtual Support Meeting — September 20, 2025 Save the Date – Alberta Dystonia Symposium - September 20, 2025 TCS Toronto Waterfront Marathon — October 18, 2025 National Virtual Support Meeting — November 15, 2025 Greater Toronto Virtual Support Group Meeting — November 30, 2025 |
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Donate to our cause at https://dystoniacanada.org/donateonline
Follow DMRF Canada on our social media platforms to stay up to date on upcoming events near you: |
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Our mailing address is:
Dystonia Medical Research Foundation Canada
PO Box 1009 Stn Toronto Dom Toronto ON M5K 1P2 Canada Would you like to forward this email to a friend?
Click here
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