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DMRF Canada: 
February 2023 E-newsletter
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Each new year provides fresh opportunities and hope for a better future. While we continue to provide the resources, support, and funding for research, we look forward to working with the community to bring us closer to our goals this year.
 
 
Table of Contents
 
 
Going Forward: Dystonia Care Package Update 
 
 
To provide the dystonia community with the tools and resources required to live their best lives with dystonia, DMRF Canada has updated our Going Forward Dystonia Care Package. It now includes additional information on the financial supports available for the community as well as a new factsheet on the non-motor symptoms of dystonia. Click here to download the updated version.
 
  
 
Do you want to help raise funds for research and support programs for the dystonia community, but you aren’t sure where to start? Do It for Dystonia is a great way to put your passions, skills and talents on display while supporting the community. There are so many ways for you to ‘Do it’ for dystonia - and we are here to support you. Click here to learn more and to start your campaign today. 
 
Promoting public awareness of dystonia is an important aspect of DMRF Canada's mission. In addition to improving society’s understanding of dystonia, increased awareness directly impacts our ability to fundraise for research and identify people and families who need our help. 
  
We are thrilled to announce that our “What is Dystonia” awareness video has now been viewed more than 50,000 times on YouTube! Thank you to everyone that has viewed, shared, and commented on the video. If you haven’t already watched the video, please click here to view. 
 
Opportunity to Volunteer for DMRF Canada 
 
 
 
One of the most impactful ways DMRF Canada provides support is through our Support Group Network. These groups serve as a lifeline and provide opportunities for people with dystonia and their families to connect and thrive in the community.
 
We are looking for new Support Group Leaders to volunteer in the following communities: 
 
Calgary AB,
Fredericton NB,
Hamilton ON,
Kelowna BC,
Toronto ON,
Vancouver BC
Victoria BC.
 
Volunteers can take on different roles or tasks within the group. To read more about the Support Group Leader role and responsibilities please click here. If you are not interested in leading a group, but you would still like to volunteer your time, please let us know.
 
Email info@dystoniacanada.org with your contact information and the community you’d like to volunteer in.
 
 
Accepting Applications: 
2023 Jackson Mooney Patient Grant
 
The Jackson Mooney Patient Grant is accepting letters of intent until April 30, 2023. The Jackson Mooney Dystonia Patient Education Grant was established to provide financial assistance of up to $5,000.00 for Canadian residents who are living with dystonia, in financial need, and committed to enhancing their current situation through furthering their education.
 
NEW: You can submit your Letter of Intent using a template we developed.
 
Click here to download the template and read more about the application process and requirements.  
 
 
Opportunity to Participate in Dystonia Research Studies 
New! Participate in Post-acute Rehabilitation Study 
 
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Individuals with neurological conditions who have done or are doing rehabilitation in Canada are invited to complete this “Time spent in post-acute rehabilitation in Canada” survey by Dr. Janelle Unger, Western University.
 
This survey is intended to provide a comprehensive understanding of rehabilitation services being used in Canada by individuals with neurological conditions.
 
Click here for more information and to participate in this survey.
 Nationwide Survey of Patients and Families 
 
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Researchers from McMaster University are looking for individuals to participate in “Access to Deep Brain Stimulation Surgery” research study.  
  
The survey is open only to those living in Canada who have been identified as someone diagnosed with or a family member or caregiver of someone diagnosed with primary dystonia, Parkinson's Disease, or essential tremor.  
  
The survey is open until MARCH 31ST, 2023. Click here for more information.
Diet and Dystonia 
A survey by Dystonia Europe
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This research study, led by Dystonia Europe, aims to examine how diet affects dystonia, and if so, how dystonia specialists could address these problems. This survey is open globally and is available in 16 languages until JULY 31st, 2023.  
 
Click here for more information and to participate in this survey.
 
Note: The information for participation in the above two research studies was also emailed to a list of individuals who have identified as having dystonia or a caregiver of someone with dystonia. If you did not receive that email and would like to subscribe to that list, kindly update your details here. 
 
  
 
SAVE THE DATE!
 
We are thrilled to announce that we will once again be hosting our biggest event of the year: Freedom to Move: Run, Walk, and Wheel for Dystonia in June 2023! 
  
After hosting  virtual events exclusively for the last three years, we are excited to announce that this year’s event will be a mix of both in-person event opportunities and virtual. Participants will complete a walk, run, or wheel either virtually in their own community or at one of our five in-person sites across Canada, including our Toronto event on June 11th at Downsview Park. Stay tuned for more updates.  
  
We Need Your Help: We encourage you to reach out to your networks and employers for support. You can ask them to set up a team or help with prizing and/or sponsorship opportunities for this important event. Please visit www.dystoniacanada.org/freedomtomove to download a copy of our sponsorship package and letter.
 
Please email info@dystoniacanada.org for more details. 
 
Upcoming Support Group Meetings 
 
 
We are proud to connect patients with support groups around the country. Click here to find a support group in your area.
 
Upcoming Support Group Meetings:
 

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