DMRF Canada: 
July 2023 E-newsletter
 
 
Table of Contents
 
 
Going Forward: Dystonia Care Package Reminder 
 
 
Earlier this year, DMRF Canada updated our Going Forward Dystonia Care Package to include additional information on the financial supports available for the community as well as a new factsheet on the non-motor symptoms of dystonia. If you haven't already, please click here to download the updated version.
 
 
Do It for Dystonia 
 
 
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. 
 
 
Dystonia Information Materials 
 
 
Discover a wealth of resources and support for dystonia on our Dystonia Information Materials page.
 
This page provides a comprehensive collection of educational brochures, fact sheets, and other informative materials about dystonia. Whether you're seeking to learn more about the condition, share information with others, or raise awareness in your community, these resources will be invaluable.
 
Get Ready to Unite for Dystonia Awareness: September Calls for Action! 
 
 
It's the perfect time to join DMRF Canada in our mission to promote public awareness of dystonia through Awareness Month this September.
 
Become an Awareness Ambassador and Spread the Word: Distribute DMRF Canada's dystonia educational materials to friends, acquaintances, local doctors, and hospitals. Contact info@dystoniacanada.org by August 10th to request your package and start raising awareness in your community this September.
 
For more ideas and valuable resources on how to raise awareness, please click here.
 
Calling all Volunteers in Calgary 
 
 
 
Roll up your sleeves for dystonia! Volunteer at Elbow River Casino in Calgary on August 25th and 26th for a casino fundraiser. 
 
Each volunteer's contribution is equivalent to $2,000 and directly aids dystonia research and support programs.  
 
Ready to make an impact? Sign up directly and explore available positions/shifts here.
 
For more information, email us at info@dystoniacanada.org or call us at 1-800-361-8061.  
 
Save the Date!
 
The Edmonton Dystonia Support Group will be hosting a casino fundraiser on November 13th and 14th. Stay tuned for more details to be announced soon 
 
Update: New Volunteers Join the DMRF Canada Support Network 
 
 
In 2023, DMRF Canada warmly welcomed several new Support Group Co-Leaders to our Support Network:  
We look forward to working with them to create a community for people living with dystonia their loved ones.
 
A heartfelt thank you to our retiring leaders, Laraine from the Calgary Support Group and Robin from the Greater Vancouver Support Group for their efforts in fostering a warm welcoming community in their respective areas.
 
Swimming with Dystonia 
 
 
On May 6, 2023, DMRF Canada hosted a virtual informational session with Swimming Canada on the benefits of swimming for people with dystonia.  
 
Please click here for more information, resources, and to watch the recording.
 
A reminder to please speak with your Movement Disorder Specialist about any activity to ensure it is right for you.
 
International Dystonia Symposium 
 
 
On June 1st, Frances Belzberg, co-founder of the DMRF and DMRF Canada, formally inaugurated the first day of the sixth Samuel Belzberg International Dystonia Symposium. After learning that their daughter Cheri had dystonia, Frances and her late husband Samuel established the DMRF in 1976 to help families and individuals with the disorder and to finance research. There were few patient resources available at the time, and research was essentially nonexistent. For the purpose of sharing knowledge, fostering collaboration, and advancing our understanding of dystonia, the Symposium brought together more than 340 experts, researchers, and healthcare professionals. Groundbreaking research was presented on 107 scientific posters. Key topics covered include the latest advancements in dystonia research, and emerging treatment strategies. DMRF Canada offers our thanks to the Belzbergs and the many donors who support DMRF research programs. A lay summary is planned and will be available later this year.
 
Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share this update.
 
Journal Update: New Article Released 
 
Article Image
One of the latest articles in DMRF's Dystonia journal features a new study that reveals patterns in isolated non-focal dystonia! Researchers have uncovered associations between affected body regions. Chief Editors Aasef Shaikh, MD, PhD of Case Western Reserve University and Roy Sillitoe, PhD of Baylor College of Medicine took the opportunity of the meeting to join with other members of the DMRF's Dystonia journal editorial board to discuss future special issues in process.
 
Click here to visit the Dystonia Journal Website.
 
Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share this update.
 
  
 
A BIG THANKS FOR YOUR SUPPORT!
 
Throughout June and July, we were thrilled to host our biggest event of the year: Freedom to Move: Run, Walk, and Wheel for Dystonia!
  
Across Canada, over 130 participants joined together to raise funds for critical dystonia research and support programs. Thank you to everyone that participated either virtually or at our 5 in-person events in Vancouver, Winnipeg, Toronto, Kingston, and Montreal. Stay tuned for further event details in the Fall Newsletter as well as event photos/videos! 
 
Help Us Reach Our Goal!
 
Thanks to your support, we have raised 73% of our targeted $70,000. Each day, we get closer and closer to reaching our goal, but we need your help! There’s still time to help raise funds for critical dystonia research and support programs. Click here to make your gift today.
 
 
Support Group Meetings 
 
 
DMRF Canada is proud to connect individuals with dystonia as well as family members with support groups around the country. Click here to find a support group in your area.
 
We're excited to share that our Quarterly National Virtual Support Meeting took place on July 15, bringing together a community of individuals dedicated to dystonia awareness and support. Thank you to our wonderful volunteer, Mehrafarin, for hosting this session.
 
If you didn't receive an invitation for this meeting but would like to stay updated on future events and initiatives, we invite you to subscribe to our mailing list and indicate that you are either an individual with dystonia or a loved one. By subscribing, you'll receive timely updates, valuable resources, and information about upcoming events directly in your inbox. To join our mailing list, please click here.
 
Upcoming Meetings (Save the Date)
September 30 - Greater Vancouver Area Dystonia Information Session
October 29 – Dystonie Partage Meeting (Montreal)
 
 

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