Making Great Strides for Dystonia Research
- We supported our Two-Year Clinical and Research Fellowship for Movement Disorders with a Specialty in Dystonia, valued at $100,000,for the second and final year. Dr. Mario Sousa; from Toronto Western Hospital is focused on researching the psycho-social aspect – specifically anxiety – and its impact on dystonia patients.
- Despite a chaotic and challenging fundraising environment, DMRF Canada remains committed to advancing dystonia research now – and in the coming years:
- Earlier this fall, we launched a request for proposal for our next Two-Year Clinical and Research Fellowship for 2021 - 2023.
- We partnered with the Banting Foundation to support the Dystonia Discovery Award. This grant, valued at $25,000, is awarded to researchers in the first three years of their career academic appointment - and aims to build a network of young investigators dedicated to the field of dystonia.
Providing Care and Empowering Patients
- We have continued to be a lifeline for the dystonia community, designing specialized virtual programs, webinars, and web-based materials to empower, educate, and support patients and caregivers. We supported over 6,000 individuals through our virtual programs this year.
- We’ve engaged and connected with more than 150 Movement Disorder Specialists and connected them with patients who are struggling in these times and unable to access medical help as readily as they may have prior to the pandemic.
- We provided individualized, personalized phone, and online support to the hundreds of queries from concerned parents, caregivers, and patients.
Advocacy and Awareness
- Recognizing that awareness is still a key challenge for our community, we are committed to providing vital communication materials to bolster our awareness efforts. In 2020, we published two newsletters, six e-newsletters, and have supported patients, doctors, and communities distributed close to 12,000 dystonia awareness and educational materials.
- We published a special 40+ Years of Research Achievements Report providing an overview of the key successes that DMRF has achieved since its inception.
- In September, we celebrated our most successful Dystonia Awareness Month to date, breaking our previously held record for engagement. We connected with over 15,000 people online and lit up 30 major landmarks across Canada to show solidarity with the dystonia community.
- In June, we hosted our first ever nation-wide, virtual event: Chuck’s Virtual Run Walk and Wheel for Dystonia. Close to 200 participants across 8 provinces and 49 cities registered. We surpassed our initial fundraising goal and raised close to $70,000 for dystonia research and patient support programs. In addition to surpassing our fundraising goal, DMRF Canada partnered with Pattison Outdoor Media to run advertisements across the country. From May 31 to June 30, over 500 outdoor digital signs, displayed a 10-second ad, appearing every minute. This initiative produced more than 30 million images for dystonia and Chuck’s Run across Canada!
We have done this with just two full-time staff, and by working tirelessly and passionately with our partners, interns, and volunteers from the community. The incredible support we received from our community empowered us in an unprecedented environment.
Without their dedication, our achievements would have not been possible, and the support given to 50,000 Canadians living with dystonia would cease to exist. In a year of great difficulty, we need your support now more than ever. Please give as generously as you can.
