At DMRF Canada, we are dedicated to advancing dystonia research, providing vital resources, and raising awareness through our collaborations with a diverse range of organizations. We extend our heartfelt gratitude to all our partners who contribute to our mission of empowering patients and enhancing their quality of life.
On this page, you’ll find an overview of our various partnerships, organized into four categories. Each category highlights specific organizations and the unique contributions they bring to our shared goal of supporting dystonia research and patient care. We invite you to explore these partnerships to see how together we are making a difference in the lives of those affected by dystonia.
Dystonia Medical Research Foundation (USA)
DMRF Canada works closely with the Dystonia Medical Research Foundation (DMRF) in the United States to ensure the funding of the most impactful and relevant dystonia research globally, while providing our patients with continuous access to up-to-date resources. DMRF USA has a longstanding commitment to advancing dystonia research, leading to significant breakthroughs in genetics, therapeutics, and a deeper understanding of the disorder. They also graciously share their resources and expertise, strengthening our ability to serve the dystonia community. We are proud to partner with such an outstanding sister organization.
Resource Partnerships:
- The Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson's Research (MJFF) is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today. Through their commitment to supporting people and families living with Parkinson's disease, MJFF has developed easy-to-read guides and educational materials to provide practical tips and real-world advice for navigating life with Parkinson's disease, including conditions such as dystonia and dyskinesia. Learn more about their work here.
- Brain Injury Association
The Brain Injury Association has generously provided us with a valuable resource for developing a self-advocacy plan. Self-Advocacy is an essential skill for people living with dystonia and we are thankful to the Brain Injury Association for allowing us to use their resource. For more information on Self-Advocacy, visit our Disability Advocacy page.
- Dystonia Physio Hub
Dystonia Physio Hub emphasizes the importance of physiotherapy for patients with cervical dystonia, and they have provided us with the resource of the Physio Hub for Physiotherapists and patients to use. The platform is used as a tool for physiotherapists that are wanting to learn, find exercises and help craft programs for patients with cervical dystonia, their patients will then have it available to view and understand their training programs. For more information about Dystonia Physio Hub, visit our Physiotherapy and Dystonia page under
Education & Awareness Partnerships:
- AbbVie
AbbVie is a research-driven biopharmaceutical company dedicated to tackling some of the most challenging health issues. Through their partnership with us, they have played a vital role in raising awareness about Cervical Dystonia by supporting a national public relations campaign, which helped educate the public and increase understanding of this condition. Their support has been instrumental in enhancing community education and support through our revitalized website, regional patent education meetings and the development of valuable toolkits. We extend our heartfelt thanks to AbbVie for their unwavering commitment and collaboration in our mission. For more information about AbbVie, please visit their website.
- Ipsen
Ipsen is a global, mid-size pharmaceutical company dedicated to addressing areas of high unmet medical need. Through their generous support, we have been able to produce essential resources such as the What is Dystonia brochure, the Dystonia Awareness video, and various other educational materials. Additionally, Ipsen has played a crucial role in the development of French translations for our brochures and newsletters. Their sponsorship has also been instrumental in the success of our Freedom to Move events and regional meetings. We sincerely thank Ipsen for their continued partnership and invaluable contributions. For more information about Ipsen, please visit their website.
- Merz
Merz Therapeutics, a business of Merz Pharmaceuticals GmbH, is a global healthcare leader dedicated to improving the lives of patients around the world. Over the last four years they have provided us with support in our Clinical and Research Fellowship, wellness toolkits and the #mydystonia&I webinar series. We sincerely thank Merz Therapeutics for their continued partnership and dedication to advancing our shared goals. For more information about Merz, please visit their website.
Support Partnerships:
- Mood Disorders Society Canada
The physical symptoms aren't the only thing that affect people with dystonia and The Mood Disorders Society Canada has helped us remind patients of that. They have graciously allowed us to use two of their resources, MIRA: The Mental Health Virtual Assistant and What BETTER Feels Like: Lived experiences of healing from depression. To learn more about these resources, visit the 'Your Physical and Emotional Wellbeing' section on our Living With Dystonia page.
- Dysphonia International
Identifying symptom management strategies and appropriate treatment options is extremely important for someone with dystonia. Dysphonia International has acknowledged this and has generously shared the resource with us. They provided us with a list of healthcare professionals that will help patients with Laryngeal Dystonia (Spasmodic Dysphonia) navigate their symptoms and treatment. They also invite people with Laryngeal dystonia to attend their virtual meetings. For more information on this resource, visit our Laryngeal Dystonia page, under other resources.
- Benign Essential Blepharospasm Research Foundation - USA
Finding the support and resources needed to understand symptoms and treatment options is extremely important. We appreciate the opportunity to allow people with Blepharospam and Meige's syndrome to attend the Essential Blepharospasm Research Foundation USA virtual meetings. Furthermore, we are grateful to the former Essential Blepharospasm Canadian Research Foundation for allowing us to share their resources with our patients. To learn more about these resources, visit our Blepharospasm page.
- University of Toronto - Neurologic Music Therapy (NMT)
Our patients are invited to attend the UofT Neurologic Music Therapy virtual meets. Neurologic Music Therapy (NMT) is the evidence-based practice that makes use of standardized musical exercises that can be applied to areas of functioning including cognition, motor skills & communication. The UofT NMT group is designed specifically for persons with dystonia who seek treatment strategies to reduce chronic pain and tension. For more information, visit the NMT page.
Research Partnerships
- Rare Diseases: Models & Mechanisms Network (RDMM)
The Rare Diseases: Models & Mechanisms Network connects Canada's gene discovery projects with model organism research communities, supported by Maternal Infant Child & Youth Research Network (MICYRN) to ensure collaboration and rapid communication across 23 specialist networks and 20 health research organizations. Please visit How We Support Research to read more about this organization.
- Banting Research Foundation
DMRF Canada shows our continuous support of the Banting Research Foundation Discovery Award Program. Its mission, to invest in the early career researchers on research related to the causes, mechanisms, prevention, and treatments of dystonia which could potentially enable medical breakthroughs and transformative health care advances to find a cure for dystonia. Please visit How We Support Research and DMRF Canada and The Banting Research Foundation to read more about this organization and the criteria for the funding.
- Dystonia Coalition
The DMRF Canada is proud to be a member of the Dystonia Coalition, who help facilitate career development for junior investigators interested in clinical and translational research relating to dystonia. They also provide a mechanism for senior investigators from other fields to get involved in dystonia research and foster the most promising clinical and translational studies of direct relevance to dystonia. Please visit How We Support Research and The Dystonia Coalition to read more about this organization.
Advocacy Memberships & Partnerships:
- Neurological Health Charities Canada
DMRF Canada is a proud member of Neurological Health Charities Canada (NHCC), a collective of organizations that represent people with chronic, often progressive, neurological and/or neuromuscular diseases, disorders, conditions and injuries (brain disorders) in Canada. Please visit our Advocacy page to read more about NHCC and our involvement.
- Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders (CORD) is an nationwide organization that provides a voice to advocate for health policies and healthcare systems that work for rare disorders, like dystonia. DMRF Canada is proud to be a member of CORD.
- Canadian Brain Research Strategy
As part of the Canadian Brain Research Strategy (CBRS), a pan-Canadian effort to develop a national research strategy for brain and mental health. DMRF Canada sees the vital impact of a national effort on brain and mental health research. Please visit our Advocacy page to read more about our involvement with the CBRS.