Dystonia Medical Research Foundation Canada

08/30/2024

is lighting up the night for !

The Civic Centre Clock Tower in will be illuminated in blue and white on September 3 at 8 pm. Thank you to City of Mississauga - Municipal Government for showing your support!

On September 5th, The iconic CN Tower / Tour CN in will glow in blue and white at sunset. The CN Tower’s standard light show runs for 5 minutes at the top of every hour, followed by another light show on the half hour.

To learn more about Awareness Month and how you can raise awareness, please visit dystoniacanada.org/dystoniaawarenessmonth 💙✨

08/28/2024

💙 Join Dystonia Blue Day to Raise Awareness

Dystonia Awareness Month is just a few days away. Show your support by wearing blue this September! Encourage your family, friends, and anyone you know to join in too.

Tips to participate:

1. Pick a day(s) in September to wear blue clothes.
2. Stand in well-lit areas to take great photos.
3. Share your photos on social media to spread awareness.
4. Use our website to create your captions and share your stories with dystonia.
5. Use hashtags , , , and tag us Dystonia Medical Research Foundation Canada

To learn more and for caption templates, visit dystoniacanada.org/dystoniablueday

Let's raise awareness for dystonia together!

08/25/2024

stands with us this ! We're excited to share that the Montreal Tower will shine in blue and white on September 3rd in support of our cause. 🌟💙 Let's work together to spread awareness and support for the community.

To view the schedule of monument illuminations, please visit dystoniacanada.org/dystoniaawarenessmonth

08/24/2024

is lighting up for ! We're grateful to City of Moose Jaw for illuminating the City Hall Clock Tower in blue from August 30 to September 3, 2024, to bring attention to . Together, we can raise awareness and support those affected. 💙✨

To learn more about Dystonia Awareness Month and how you can make a difference, please visit dystoniacanada.org/dystoniaawarenessmonth

08/23/2024

is shining bright for ! We're thankful to St. John's City Hall City of St. John's for lighting up in blue from August 30 to September 1 as well as the Confederation Building on September 3 to spotlight . Let's unite to spread awareness and support for the dystonia community. 💙✨

Discover more about Dystonia Awareness Month and how you can contribute at dystoniacanada.org/dystoniaawarenessmonth.

08/21/2024

Jennifer Lovell, our Winnipeg Support Group Leader, will be featured in our upcoming Fall Newsletter. 🌟

Jennifer's journey with dystonia has been filled with challenges. She waited 44 years, facing misdiagnosis after misdiagnosis, before finally finding hope with a correct diagnosis and treatment.

👉 To read more about Jennifer’s story and other dystonia updates, sign up for our newsletter: dystoniacanada.org/signup

Stay tuned!

08/16/2024

Join the Winnipeg Dystonia Symposium on October 19! Participate in an enriching day filled with dystonia education, information, and community sharing.

Thank you to our wonderful support group leader, Jennifer and her committee of volunteers for planning this Symposium.

Secure your spot by registering now.

For more details, please visit: dystoniacanada.org/upcoming-events/winnipeg

08/14/2024

🎥 The Freedom to Move highlights video is now available!

A heartfelt thank you to all participants, donors, volunteers, and sponsors! Together, you helped raise awareness for dystonia, support research, and build a stronger community.

Check out our event's highlights video to relive the inspiring moments and see the impact you made.



Special thank you to our sponsor Ipsen for their unwavering support of this event.

08/08/2024

🚨 Call for Connecting DMRF Canada with Your Network

The evolving economic landscape and the loss of some of our most generous supporters have severely impacted our ability to fund crucial dystonia research and support programs.

We’re calling on you to help amplify our reach. Connect us with your network or introduce us to organizations that can provide sponsorships, grants, and donations, or include us in their employee giving programs.

Learn more about how you can help: www.dystoniacanada.org/connectdmrfc

For referrals or questions, contact us at [email protected].

08/07/2024

New research from the Dystonia Coalition in the post below.

You can also stay informed about ongoing efforts through our website www.dystoniacanada.org/latest-dystonia-research-news

Movement Disorders Clinical Practice is a peer-reviewed journal publishing high-quality articles related to clinical aspects of movement disorders.

08/04/2024

🎙️ Check out a special episode from the United Way's podcast featuring an interview on living with dystonia.

In this episode, Donna Bedard shares her personal journey with dystonia. Donna is a long-time member of the Edmonton Support Group. She offers great insights on how as a society we can work to support the community of people living with disabilities.

Listen now: feeds.transistor.fm/peace-out-poverty

08/02/2024

🌟 Toronto Volunteer Opportunity

DMRF Canada has an exciting fundraising opportunity through Bingo World and Gaming Richmond Hill In exchange for volunteers’ time, the Foundation will receive a portion of the money raised from the Bingo events.

Volunteering Details:

Shift Duration: 2.5 hours

Funds Raised: Approximately $3,000 per event for dystonia research and support programs

Commitment: Participate every two months for at least six months

Requirements: You don’t need to have dystonia to volunteer. Volunteers should be able to walk or stand for their 2.5-hour shift and be capable of tucking in chairs.

For more information or to volunteer, please email us at [email protected].

A heartfelt thanks to Bingo World and Gaming Richmond Hill for this opportunity.

07/31/2024

📢 Our July 2024 E-newsletter has just been released!

Discover the latest news, upcoming events, and important updates. Check your inbox or visit dystoniacanada.org/newsletters to sign up.

Stay tuned. Stay engaged. Stay informed.

07/26/2024

🎉 National Disability Independence Day!

At DMRF Canada, we are dedicated to empowering our community and advocating for their right to live fulfilling lives. Visit our disability advocacy page to learn how you can advocate for yourself www.dystoniacanada.org/disability-advocacy

07/22/2024

🧠 Happy World Brain Day

Today, we join the global community in raising awareness about brain health and neurological disorders.

At DMRF Canada, we are committed to supporting those affected by and promoting research for better treatments and a cure. Thank you to everyone who contributes to our mission. Whether you volunteer, donate, or spread awareness, your support means the world to us and those we serve.

07/15/2024

Join the National Virtual Support Meeting next week.

🗓️ July 27, 2024

⏱️ 1 PM – 3 PM Central Time

📍Virtual: Zoom


Thank you to our wonderful volunteer, Jennifer, for hosting this session.

For more details, please visit:

https://ow.ly/w9up50SAL1Q

07/13/2024

📣 September is Dystonia Awareness Month! Become an Awareness Ambassador and help us raise awareness of dystonia. We rely on your strength and support.

Help us spread the word by distributing our educational materials to your friends, family, local businesses, clinics, hospitals, and healthcare professionals.

🌟 Request your package by contacting [email protected] by August 10th.

🌟 For more information, please visit dystoniacanada.org/become-dystonia-awareness-ambassador.

07/07/2024

🚨 Only 7 Days Left to Raise $50,000 for Critical Dystonia Research and Support Programs.

With the finish line in sight, we’ve raised over $46,000! You can propel us over the final hurdle by fundraising or donating to close the gap.

Let’s cross the finish together and stronger than ever!

Donate NOW: www.freedomtomove.org

07/05/2024

Join the Greater Vancouver Support Group Virtual Meeting next week.

🗓️ July 13, 2024

⏱️10:00 AM – 12:00 PM PST

📍Virtual: Zoom

For more details, please visit: https://ow.ly/3Ll050SvAbL

07/01/2024

🇨🇦 Happy Canada Day!

As we celebrate the unity and pride of our nation, we thank you all for embracing Canadian values of helping others in the community. Your support means so much to the 50,000 Canadians living with . 🎉

If you would like to learn more about ways to get involved in the dystonia community, please visit our website at www.dystoniacanada.org

06/27/2024

ICYMI – Tim Williston was our feature cover story in our Fall 2023 Newsletter. His story in full is now available to read on our website

Tim is a traveler and sports enthusiast from New Brunswick. He has faced dystonia with unwavering determination for 17 years.

Tim advocates for awareness and understanding, ensuring that everyone in his circle knows about dystonia and supports the cause. He reminds us that living with dystonia doesn't mean giving up on the things you love – it's about finding new ways to enjoy life and staying positive. 🌟

👉To read more about Tim’s story, please visit: https://dystoniacanada.org/TimWilliston

To sign up to receive our newsletters, please visit: www.dystoniacanada.org/signup

06/23/2024

🚨 Only 7 days left to help us reach our $50,000 goal and support the 50,000 Canadians living with dystonia!

Register or Donate Today: www.freedomtomove.org

People give to people. YOU are the reason they will support this event. Promote the event to everyone in your network, including employers. Encourage them to donate or join your team.

For more tips and tools, please visit our website

06/22/2024

We are delighted to see the medical community participating in . A special thank you to Dr. Talyta Grippe from Toronto Western Hospital UHN Toronto General Hospital and Krembil Research Institute for walking with us at this year's event.

Dr. Grippe is the recipient of the 2023 – 2025 DMRF Canada Clinical and Research Fellowship Supported by Merz Therapeutics. Her unwavering support and commitment to are invaluable.

She is actively recruiting dystonia patients for her research study in Toronto. If you are interested in participating, please visit: www.dystoniacanada.org/study-Grippe

06/19/2024

Join the Winnipeg Support Group as they walk together to raise funds, awareness and support for dystonia!

Our thanks to group leader, Jennifer, for planning this walk. Jennifer is a strong supporter of this event as she waited 44 years for her correct diagnosis due to a lack of awareness of dystonia. By raising funds and awareness through Freedom to Move, Jennifer is actively changing the future for people living with dystonia.

📅 Date: Sunday, June 23, 2024
⏰ Time: 1:00 PM - 3:00 PM Central Time
📍 Location: St. Vital Park, 190 River Road, Winnipeg, MB

Register or donate to support the team here - www.dystonia.crowdchange.ca/54743/team/35015

If you have any questions about the Walk, please reach out to Jennifer at [email protected].

Let’s move together for dystonia!

06/16/2024

To all the fathers dealing with dystonia in their lives or in their children's lives, your resilience shines brightly and does not go overlooked. Today, we honor you for the unwavering support and strength you provide every day. 💪

DMRF Canada is here to help. Our resources are designed to support fathers facing dystonia, offering guidance and community connections. Discover more at www.dystoniacanada.org/parentsupport.

Let’s continue to support and inspire each other, today and every day. Happy Father's Day!

06/14/2024

🏆 Thank You to Our Generous Prizing Sponsors!

We're halfway through our Freedom to Move event, and it’s exciting to see so much enthusiasm and participation!

Remember, while the race will end on June 30, fundraising will continue until July 14. There's still a month left to fundraise and win amazing prizes through your virtual participation.

Let’s keep the momentum going and finish strong. 💪

👉 Check out our Fundraising Leaderboard to see where you stand: https://www.freedomtomove.org/leaderboard

06/10/2024

Dr. Talyta Grippe is recruiting patients in Toronto for a research study.

If you missed the virtual information session on May 16, you can find a recording, the study information and how to participate on our website here: https://dystoniacanada.org/study-Grippe.

Thank you for your interest and support in advancing research.

06/08/2024

🎉 Thank You to Everyone at Freedom to Move Toronto 2024!

Despite the rain, our hearts were warmed by the incredible turnout at Downsview Park this past Sunday. We are incredibly grateful for the 80 participants who joined us this year—runners, walkers, wheelers, and even our four-legged friends! 🏃‍♂️🐕

Even in the wet weather, we united with a common purpose: to raise funds for critical dystonia research and support programs in Canada. 💪

👉 Missed the in-person event? You can still contribute by making a donation: https://dystonia.crowdchange.ca/54262

👉 Complete the post-event survey: https://dystonia.crowdchange.ca/54262

Thank you to our event sponsor Ipsen

Photo credit: Steve Kean

06/06/2024

Shared with permission from DMRF (USA)

Register for Botulinum Neurotoxin Webinar on June 12th.

Join Dr. H. A. “Buz” Jinnah from Emory University School of Medicine as he explores the use of Botulinum neurotoxin injections in treating dystonia, including those recently approved. This session will cover how the treatment works, what factors can influence the outcome of treatment, and the chances of side effects.

📅 June 12 (Wednesday)
⏰ 6 PM CT
📍 ZOOM

👉 Register Here: https://ow.ly/LRRs50Sbh74

Please be aware that some of the information presented may not be applicable or relevant to Canadian audiences as it may be based on resources and regulations specific to the United States.

06/05/2024

🌟 Join Us Across Canada This June!

Unite with us from every corner of Canada and be a part of the Freedom to Move for Dystonia throughout the entire month of June. Your involvement plays a crucial role in a nationwide effort to ensure that dystonia research and patient assistance continues. 🏃‍♂️🏃‍♀️

Let’s rally to raise $50,000 for the 50,000 Canadians living with dystonia. 🏃‍♂️🏃‍♀️

Thanks to our generous prizing partners, the top three individual fundraisers will receive something special! 🎉

👉 Join Now: https://dystonia.crowdchange.ca/54743