Dystonia Association, Support, & Information - Alberta , CA

03/01/2026

Your support THIS year shapes the progress we can make next year. 💙
Take a look at what YOU made possible: www.dystoniacanada.org/2025successes

There’s still time to make a meaningful impact. Your year-end gift fuels research, support services, and nationwide awareness. Make your gift today: https://dystoniacanada.org/donateonline

02/01/2026

30/12/2025

29/12/2025

https://www.facebook.com/share/p/1AGY9K9S27/

How do I know if I have dystonia?The type of doctor with the training and expertise to diagnose and treat dystonia is a movement disorder specialist—a neurologist with special training in movement disorders. Dystonia is a clinical diagnosis, which means the physician must observe and recognize the...

29/12/2025

https://www.facebook.com/share/p/1BqbUEQpv8/

"Just when the illness tried to push me into a corner, I realized something: every fall, every obstacle, every struggle can become an opportunity. Every pain can teach us something—if we choose to listen."
Meet Antonio Santilli from Italy, who has shared his experience of living with oromandibular with us. Oromandibular dystonia ( ) is a focal neurological disorder causing involuntary, forceful muscle contractions in the jaw, tongue, and face, leading to difficulty speaking, chewing, and swallowing, often with grimacing or teeth grinding. Read Antonio's beautiful blog post here: https://dystonia-europe.org/2025/10/meet-antonio-santilli-my-dystonia-story/

26/12/2025

“I’ve explained it to 26 different doctors. I’m done explaining, I want this podcast to do the explaining for me.”

In this episode of the Dystonia Matters Pod, Tom opens up about life with dystonia and the quiet exhaustion of telling your story again and again to people who still do not fully understand.

Most people have never seen Tom have a spasm. Not because it does not happen, but because he has learned how to hide it. Hoodie pockets. Turning away. Timing his movements.

Dayna and Tom talk about what it means to mask symptoms. The constant calculations. The effort it takes just to get through the day. Not for attention. Not for sympathy. Just to cope.

🎧 Listen to the full episode here: https://open.spotify.com/episode/2K2I9iSwxkR0JHCohd7SWS?si=tPdHBecZQnOqdM9ALERxaQ

24/12/2025

There’s a pause before the words.

Not the pain—the pause.

The moment you decide whether to say something or let it go.

If you know that pause, I see you.

~ Stephanie ~

23/12/2025

Remember to take care of you this holiday season. 💙

Try giving yourself a little compassion by:
- Setting boundaries
- Saying no when you need to
- Making time for yourself
- Stepping back to recharge

And if you need someone to talk to, the 988 Lifeline is here for you 24/7. Call, text, or chat 988.

22/12/2025

Prof David Marsden (1938 – 1998) was one of the leading neuroscientists of his time and one of the profession’s most charismatic personalities. His unique clarity of vision, and his ability to combine clinical and scientific skills, brought the study of movement disorders to the forefront of clinical neurology and, in 1986, he co-founded the tremendously successful Movement Disorders Society.

Following the founding in 1993 of Dystonia Europe (at that time known as the European Dystonia Federation), Prof Marsden gave welcome advice and support until his untimely death in 1998. He was the pre-eminent scientist in Europe with a deep interest in dystonia, and his huge influence on advances in its diagnosis and treatment is undisputed.

Dystonia Europe established the David Marsden Award in 2003, to acknowledge his work on the dystonias, and to honour the immense part he played in improving the lives of so many people who live with the condition. The aim of this award is to stimulate developing knowledge of and interest in dystonia through publications of aetiology, pathogenesis, diagnosis in dystonia or on the psycho social effects.

Learn more: https://lnkd.in/eJYEeHh4

22/12/2025

If you are like me living with a health condition, or if you have any other situation in life where you are trying to figure out how to either improve your health or figure out a difficult challenge or situation you are working through, starting a business or a family, etc., it often takes a lot of....

22/12/2025

📢 Now available on the Dystonia Europe Youtube Channel:

📺 Watch Dystonia Europe President, Edwige Ponseel, interview Dr. Ahmet Kaymak, winner of the David Marsden Award 2025: https://lnkd.in/egc3EbQ9

💬 In the interview Dr. Kaymak discusses his research on 'Spiking Patterns in the Globus Pallidus Highlight Convergent Neural Dynamics across Diverse Genetic Dystonia Syndromes', and how this may lead to the refinement of therapies to improve treatment outcomes for individuals with .

🏆 Applications are now open for the 2026 David Marsden Award. The winning researcher will receive €10,000! Learn more at https://davidmarsdenaward.org/