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:
Innovative Research, Investments, and Breakthroughs
- Awarded the first year of our Two-Year Clinical and Research Fellowship for Movement Disorders with a Specialty in Dystonia, valued at $110,000. The selected Fellow, Dr. Talyta Grippe, Krembil Research Institute, University Health Network, Toronto, ON research will focus on developing the design of a novel non-invasive neuromodulation treatment protocol tailored to different types of dystonia, of which some may have the potential to be used as a diagnostic tool.
- Launched a multi-centered research project led by Dr. Laura Cif, LRENC Montpellier, France partnered with Dr. Alexandre Legros, Western University and Dr. Gabriella Horvath, University of British Columbia valued at $100,000. This project will aim to validate a clinical and deep learning-based tool for recognition assessment and monitoring of complex movement disorders in dystonia patients.
- Continued to partner with the DMRF in the United States to fund the best research world-wide. Since 1976, this collaboration has funded over 400 grants awarding over $22 million in research funding.
- This includes a grant to Dr. Jean-Francois Nankoo, University Health Network, Toronto, ON. His project, “Theta Burst Transcranial Focused Ultrasound as a Novel Treatment for Cervical Dystonia” aims to explore the effects of a novel non-invasive brain stimulation technique that has the potential to be a safer, less costly, and more accessible alternative to deep brain stimulation.
- This includes a grant to Dr. Jean-Francois Nankoo, University Health Network, Toronto, ON. His project, “Theta Burst Transcranial Focused Ultrasound as a Novel Treatment for Cervical Dystonia” aims to explore the effects of a novel non-invasive brain stimulation technique that has the potential to be a safer, less costly, and more accessible alternative to deep brain stimulation.
Tailored Support for a Connected Community
- Expanded our online resource bank for health professionals to include resources and best practices for physiotherapists to incorporate in their treatment of people with dystonia. A top request from our community, the online resource bank has been accessed over 300 times this year.
- Implemented 7 recommendations from our Support Advisory Group Committee, comprised of members with lived experience of the condition from diverse geographic locations in Canada, into our support programming ensuring that the lived perspective of people with dystonia is fully integrated into our model of care.
- With continued emphasis on removing barriers and improving accessibility we offered several new resources including self-advocacy tools and resources, and enhanced patient care packages.
- To bolster community support and engagement, we offered one-on-one, personalized phone and online support as well as a mix of virtual and in-person support meetings, providing a more customized approach for peer support. Hundreds in the dystonia community benefitted from meetings on swimming with dystonia, quarterly national meetings, local in-person meetings, and dystonia-specific support meetings offered through our international collaboration with the Benign Essential Blepharospasm Research Foundation and Dysphonia International.
Amplifying our Collective Voice to Raise Awareness
- Published two newsletters, five e-newsletters, and supported the community through our digital and print resources that have been accessed close to 165,000 times.
- In September, we celebrated Dystonia Awareness Month, and connected with over 30,000 people online – our most successful campaign to date. We lit up 11 major landmarks to show solidarity with the dystonia community.
- In June, we hosted our nation-wide, hybrid in-person and virtual event: Freedom to Move: Run, Walk and Wheel for Dystonia. Across 9 provinces, we raised over $50,000 for research and patient support programs.
