DMRF Canada is comprised of a wonderful community of supporters, volunteers, and donors dedicated to empowering affected individuals and their families to thrive and live their best lives with dystonia. With a full-time staff of just two and thanks to your incredible support, the following achievements were made possible this year:
- Continuous Steps Towards Finding a Cure
- Invested in research aimed at developing more effective treatments and enhancing the quality of life for those affected by dystonia. We also took significant steps in cultivating the next generation of dystonia specialists through the second-year funding of our Clinical and Research Fellowship to Dr. Talyta Grippe at the Krembil Research Institute in Toronto. Valued at $110,000. Her research focuses on a study that will enable the design of a new non-invasive neuromodulation treatment protocols for various types of dystonia and potentially a diagnostic tool.
- Through our partnership with DMRF US, we supported top research worldwide. Since 1976, this collaboration has funded over 400 grants, totaling more than $22 million. In 2024, we funded 7 grants and 4 fellowships, including support for Dr. Jean-Francois Nankoo, who is researching Theta Burst Transcranial Focused Ultrasound for cervical dystonia at the University Health Network in Toronto.
- Dystonia in the News, All Across Canada
- In June, we hosted our nation-wide, hybrid and virtual event: Freedom to Move: Run, Walk and Wheel for Dystonia. Across 9 provinces, and 110 participants, we raised over $50,000 for research and patient support programs.
- This September, we hosted our most successful Dystonia Awareness Month yet, engaging over 40,000 people online. In a powerful show of solidarity, 18 landmarks across Canada were illuminated in blue, and the City of Port Moody officially proclaimed September 2024 as Dystonia Awareness Month. We also celebrated our dedicated volunteer ambassadors nationwide, who tirelessly promoted dystonia awareness within their communities.
- In partnership with AbbVie Canada, we launched a National PR campaign during Dystonia Awareness Month to raise awareness of cervical dystonia, sharing impactful stories of Canadians living with the condition and their care partners. This campaign featured interviews on CTV News Calgary, Global News, Healthing, The Hamilton Spectator, and Journal de Montreal, alongside radio and podcast interviews with Dr. Susan Fox and Dr. Davide Martino, who provided expert insights on cervical dystonia. Additionally, a 'Living with Dystonia' ad accompanied the Healthing article, further amplifying our message. This campaign has been viewed over 5 million times, significantly expanding public awareness and understanding of dystonia.
- The Winnipeg Symposium, hosted on October 19th, 2024, saw over 50 people in attendance, including allied healthcare professionals. The Symposium was featured in the Winnipeg Free Press, Senior Scope, along with CBC and CJOB Radio.
- Advancing Standards in Dystonia Care and Research
- 3rd Annual Canadian Movement Disorders Meeting (hosted by Parkinson Canada and CMDS) – DMRF Canada participated in this meeting held on November 8-9, 2024. This year, the meeting saw early-career investigators supported by travel awards as well as abstract submissions on dystonia. It was a platform for robust discussions on dystonia care pathways or care delivery, functional and drug-induced movement disorders, and the non-motor challenges in movement disorders.
- Dystonia Canada Science and Research Meeting – This inaugural strategic research meeting brought together neurologists and researchers from diverse backgrounds across Canada fostering collaboration and the exchange of ideas on pressing challenges in dystonia. It marks a pivotal moment for DMRF Canada as we break new ground by challenging the status quo for patient care and research in Canada, demonstrating our commitment to drive meaningful impact.
- Advocating for Change
- Partnering with the NHCC, we announced a new advocacy focus on a National Population Health Study of Neurological Conditions, emphasizing the importance of knowledge and data on neurological conditions. The previous four-year study (2009-2013) was Canada’s first-ever population health study of neurological conditions.
- During International Brain Awareness Week in March, DMRF Canada proudly stood alongside The Canadian Brain Research Strategy (CBRS) and its 24 research funding organizations to champion the awareness of brain research. The partnership allowed us to express the critical aspects of preventing and treating brain conditions but also develop a strategy to reinforce brain research as a whole.
- Empowering Our Community Through Knowledge and Support
- This year, our amazing Support Group Network across Canada hosted over 30 Support Gatherings including National Virtual Support Group Meetings, the Winnipeg Symposium, and a special event at the UBC Brain Wellness Program engaging hundreds in the dystonia community.
- Published two newsletters, five e-newsletters, and supported the community through our digital and print resources that have been accessed over 200,000 times.
- Recognizing that dystonia can often derail career paths, for the 8th consecutive year we awarded the Jackson Mooney Patient Education Grant, which offers up to $5,000 in financial assistance to Canadian residents living with dystonia who are in need and committed to furthering their education. This year, we recognized two exceptional finalists:
- Andrée-Anne (Montréal) – Bachelor’s degree in Criminal Studies, along with a Bachelor’s degree in Psychology.
- Ellen Doria (Fredericton) – Bachelor of Science program, majoring in Applied Mathematics and Computing Information Systems at Athabasca University.
