Moving Forward E-Newsletter
June, 2018
Dear Friends,
 
The warm weather is here and that means its walk, run, and wheel weather! Our thanks to all of you who participated and supported our various walk, run and wheel events over the past few months.  Thanks to you, we’ve raised approximately $80,000 in these events this year!  Our thanks to the volunteers, participants, Group leaders, and sponsors who helped to make these events such a success. 
 
And though summer is just arriving, September is right around the corner! Click here for details on how you can support Dystonia Awareness Month this coming September. Remember every act to raise awareness of dystonia helps! As always, thanks for your support, 
Have Your Say - For Residents of Quebec  
If you are a resident of Quebec, and you suffer from Cervical Dystonia - this is your chance to provide input into a survey that will help to provide details on your experiences and unique challenges that you face with your Dystonia. Your input will help us to complete a submission for INESS about the specific treatment needs of Dystonia patients in Quebec. 
 Starbucks
If you complete the survey you will receive a $5.00 gift card Starbucks and your participation is very important! Please click here to start the survey now. 
Chuck's Run 2018 Was A Success!  
 
Chucks Run, Walk, and Wheel for Dystonia 2018 was a huge success this year, raising close to $50,000 to support critical dystonia research. We want to thank all of our participants and sponsors for making this event possible. Special thanks to Chuck's Run 2018 Ambassador, Casey Kidson, for championing our cause and this event. 
 
Check out our photos from the event on Facebook.
 
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September is Dystonia Awareness Month!  
Help Us to Raise Awareness for Dystonia  
 
Join the Dystonia Medical Research Foundation (DMRF) Canada to create awareness through the "Dystonia Moves Me Campaign," taking place during the month of September. You can be one of the thousands of volunteers throughout Canada and the U.S. whose goal is to increase dystonia awareness and reach out to those who are undiagnosed. 
 
Click here to find out how you can get involved in September 2018. 
Calgary Dystonia Symposium - 50% Sold Out 
Register today! 
 
 Join DMRF Canada for a FREE, two-day symposium in Calgary!
 
When: September 15 from 9:00 – 4:30 pm and September 16 from 9:00 – 1:00 pm
 
Where: Best Western Village Park Inn, 1804 Crowchild Trial NW – Calgary, AB
 
The symposium ium will feature a range of special guests, speakers, and sessions, including a Key Note presentation by Tom Seaman! Click here to learn more about this exciting event, and click here to see the symposiums full schedule (subject to change). 
New Recipient of the 2018 Banting Research Foundation Discovery Award 
 
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DMRF Canada, in partnership with The Banting Research Foundation, is proud to announce our support of Dr. Nomazulu Dlamini, MD PhD. Neurology, from the Hospital for Sick Children, as the recipient of the 2018 Banting Research Foundation Discovery Award. 
 
Dr. Dlamini's research project, entitled:  Neural network reorganization and maladaptive plasticity in dystonia post childhood basal ganglia stroke: a developmental model for the investigation of the neurobiological substrate of dystonia, was one of nine grants this year, out of 47 applications.
 
Dr. Dlamini's grant application states that this research will "improve understanding of ‘why dystonia occurs, when it occurs, and in whom it occurs’, potentially providing paradigm shifting opportunities for the development of future mechanism and individual targeted therapies to impact the quality of life of children, adults, and their communities."
 
We can't wait to see what discoveries this research will yeild. You can read the full funding announcement here. Stay tuned for more updates on Dr. Dlamini's research in the coming months.
Are you a caregiver or parent, supporting a loved one with dystonia? 
 
Remember that as a caregiver, your health and well-being are as important as those of your loved one. Click here for a list of tools, resources and materials to help parents, as well as their children and teens living with dystonia.  
 
If you’re a caregiver taking care of a loved one with dystonia, click here for a  number of resources that can help you to cope.  
 
DMRF Canada support groups are open to caregivers, parents and anyone whose lives are touched by dystonia. If you are caring for a family member or friend with dystonia, take care of yourself as well. Get help from family, friends and professionals. If you are in a family setting, divide up chores and schedules in ways that spread the load, don’t overburden, and provide a sense of teamwork. Click here to find out more about support groups near you.  
If You Live in Alberta, Have Your Say 
 
Alberta’s doctors, through the Alberta Medical Association, have established albertapatients to start a dialogue about health care in our province. Our goal is to identify and examine the health care issues that matter most to you. Click here to provide your input!
Living Well with Dystonia 
Resources for living with dystonia. 
 
There is no single strategy for living well with dystonia. DMRF Canada has compiled some suggestions from healthcare professionals, individuals with dystonia, and support leaders. 
 
You can read our suggestions for living well with dystonia by clicking here. Please work with your doctor to create a plan that works well for your unique circumstances. 
Symposium Sur La Dystonie
 
Clinical Trials for Cervical and Focal Dystonia 
We need your help! 
 
Participate in a clinical research trial to help advance dystonia research! 
 
Clinical Trial on DBS for Focal Hand Dystonia: Click here to learn more about how you can participate in the study. 
 
Clinical Trial for Cervical Dystonia: There is a clinical reserach study being conducted at Toronto Western Hospital to test a new drug for Cervical Dystonia. Click here to learn how you can participate. 
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Employee Giving for Dystonia 
 
Many organizations have an employee giving program, where you can designate a gift to the charity of choice. Some corporations will match your charitable donation.  Often all you have to do is ask. Simply contact your Human Resources department for information on your organization's program, and express your desire for them to inform DMRF Canada of the gift with your name and address. Every little bit helps!
 
Thanks for your support.


Upcoming Toronto Support Group Meetings  
 
Join the Toronto Support group for their upcoming July Support Group Meeting. 
 
When: Saturday, July 21 , 2018. See the details here. 
 
Where: 32 Kern Rd, North York, ON, M3B 1T1
 
If you have any questions please contact Shirley at dmrfctoronto@gmail.com. We look forward to seeing you there!
Twisted Talk  
A new English-speaking support group in Montreal! 
 
If you are an English-speaking dystonia patient living in Montreal, there is a new support group just for you! Click here to join Twisted Talk on Facebook and stay up to date with all the twisted talk in Montreal! 
Monthly Giving Plan  
Join the Monthly Giving Team for $5 per month! 
 
It is important for small organizations such as DMRF Canada have a steady and predictable revenue base with which to fund groundbreaking research on dystonia. Monthly giving offers you a way to support critical dystonia research, programs, and services throughout the year. 
 
Click here to read monthly donor testimonials and to join the Monthly Giving Team today! 
In Loving Memory  
Rest In Peace Harry Lovering 
 
It is with a heavy heart that we share the news that former Hamilton Support Group Leader, Harry Lovery, has died, surrounded by family on June 23, 2018 in his 87th year.
 
Harry started the Hamilton Support Group in 1994 and launched the first Walk and Wheel for Dystonia in Hamilton in 1996.  Harry was an incredible supporter and advocate of dystonia awareness and he will be missed.  Read more about Harry's extraordinary life here.  On behalf of DMRF Canada and the dystonia community, we send our very best wishes to Harry's family. 

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Address postal inquiries to:
Dystonia Medical Research Foundation Canada
209 - 550 St. Clair Ave. West
Toronto, ON M6C 1A5

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