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DMRF Canada: 
July 2022 E-Newsletter
 
Table of Contents
 
 
Dystonia Awareness Month 
 
 
Preparation for Dystonia Awareness Month in September is in high gear! Throughout the month of September, we will be raising awareness of dystonia across Canada under the theme of Dystonia Strong. 
 
Join our efforts and become a Dystonia Awareness Ambassador to help increase awareness in your local community. Please sign up by August 5, 2022.
 
Click here to learn about other ways to help raise dystonia awareness.
 
 
First Scientific Journal Dedicated to Dystonia  
 
 
We are excited to announce that the first scientific journal dedicated to dystonia now has four articles published covering cervical dystonia, Blepharospasm, Tele-Yoga, and Writer’s Cramp.
 
It's thanks to the help of the dystonia community that we were able to achieve this!
 
A special thanks to Dystonia Medical Research Foundation for their efforts on this journal.
 
To read these articles please click here
 
Shop DMRF Canada Merchandise 
 
 
 
Help celebrate the strength and resilience of the dystonia community while increasing much needed awareness. New to this year, DMRF Canada will be selling “Dystonia Strong” yard flags for you to display.
 
Hurry! Limited Stock! 
 

Consider purchasing a dystonia alert bracelet. Wearing a dystonia alert bracelet will provide important information about your condition to medical professionals in the event of an emergency.
 
Shop Here
  
Freedom to Move: Help Us Reach Our Goal! 
 
 
 
With close to 170 participants across Canada racing to the finish line on June 30th, this year’s Freedom to Move has raised just over $65,000 so far!
 
We are so close to our $75,000 goal and there’s still time to help raise funds for critical dystonia research and support programs. Click here to make your gift today. Remember, July 15th is the last day to qualify for prizes!
 
Thank you to our all wonderful and generous participants, donors, and sponsors for your continued support of Freedom to Move.
 
Tips on Finding a Doctor 
 
 
 
One of the most common inquiries DMRF Canada receives is from people seeking help locating a doctor who is qualified to diagnose and treat dystonia. 
 
Here are some must read tips to help you find a doctor. 
 
Thanks to the DMRF USA for compiling these tips and allowing us to share them.
 
 Helpful Resources 
 
Tardive dyskinesia Updates
 
We’ve updated our website sharing resources about one form of drug induced dystonia – Tardive dyskinesia. Read more here.
 
Click here to watch/listen to stories of people thriving with tardive dystonia.
 
Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share the information and patient stories on Tardive Dyskineasias
 
Emotional & Mental Health
 
Dystonia is more than just a movement disorder. The impact goes far deeper and may affect a person's emotional and mental health. Click here for an article to help you to cope with other symptoms such as depression, stress, and anxiety. 
 
Dyfy the Storm Podcast
 
You are not alone in your journey with dystonia. The brainchild of dystonia thriver and advocate, Casey Kidson's podcast Dyfy the Storm creates a safe place for dystonia thrivers to share their inspiring stories.
 
Listen Here
 

 
 
Support for Unique Assistive Devices 
 
 
Tetra Society is a non-profit charity organization that recruits volunteer engineers and skilled trades people to design and construct unique assistive devices for individuals with disabilities with no cost for labour.    
  • Fill out a Request for Assistance (RFA) online at tetrasociety.org and it will be directed to the Coordinator of the Tetra Chapter nearest the client for assignment of a volunteer to carry out the project request, in consultation with the client.  
No medical referral is needed and you do not submit medical documents. With few exceptions, material costs are also covered.
 
Clinical Study Update: Investigating Remission 
 
There are occasional reports of dystonia symptoms going into remission. Given the research and prognosis implications of this, investigators did a systematic review of reports of remission in the medical literature. They reviewed data from 2,551 cases with reports predominantly from individuals with cervical dystonia or blepharospasm/Meige syndrome.
 
Learn more about the study published by the DMRF USA here
 
Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share this update.
 
  
  In Case You Missed It!
 
Watch/listen a replay of these webinar recordings for:
 
Upcoming Meetings & Events 
 
 
 
National Support Group Meeting - July 17, 2022 @ 1PM to 3PM ET
 
 
 
 

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