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DMRF Canada, in partnership with the Edmonton Support Group, continues to advance better care, expand treatment options, and drive research toward a cure for dystonia. We’ve made meaningful progress, but there is still much to do. DMRF Canada remains deeply committed to this work, and once again we are asking for your support. Please help us move closer to a cure by making a gift today. Click here to read our 2026 Letter.
- “From Feeling Alone to Helping Others Find Hope” - Soréyea Apolzer's Story
Before dystonia, I was the healthiest and most accomplished I had ever been.
I worked full-time as a Legal Assistant in Personal Injury and had a bright future within the firm ahead of me. I volunteered weekly caring for the dogs at a local shelter, routinely took high-intensity fitness classes, and spent lunch hours training for a 10K marathon. I shot a traditional recurve bow while often training for local archery competitions and went on multi-hour hikes with the dream of one day completing the Pacific Crest Trail. I rode horses with my Mom and hunted/fished with my Stepdad for hours at a time and regularly took long road trips with the dream of one day driving across Canada.
Then, in September 2018, the life I knew changed.
Shortly after a serious car accident, I began experiencing severe and debilitating symptoms. My neck would involuntarily twist, forcing my head into a fixed position over my right shoulder. I could only turn my head by using my right hand and arm to physically push it back into place. But the moment I let go, my head would immediately twist back over my shoulder.
I went from doctor to doctor searching for answers. Eventually, my symptoms became so severe that I had to be admitted to the hospital. Three and a half months later, after being referred to a specialist by the hospital’s neurologist, I finally received a diagnosis in December 2018: dystonia.
I had never heard of it. No one I knew had either.
I was terrified. It felt like the life I had created and the future I was planning were suddenly out of reach, with no guarantee that I would ever get them back.
Sadly, I know that feeling is familiar to many people in the dystonia community.
The uncertainty. The search for answers. The fear of what comes next. And sometimes, the realization that the professionals you turn to for help may not have the answers either.
Finding someone who understood
Early in my journey, I was told that I was either the first or the worst case of dystonia that any of my treatment providers had ever seen. Imagine how frightening that is to hear when you are already struggling to understand what is happening to your body.My initial family doctor didn't take the situation seriously. Eventually, I found a new doctor who did.
He took the time to research dystonia, explore ways to help me manage my symptoms, and provide emotional support whenever I needed it.
My movement disorders specialist has guided me through so many life changes, provided me with a wealth of information and techniques to help manage my symptoms, adjusted my medications as needed, continued to follow up on what is and isn't working, and has always asked then truly listened to how I am managing everything emotionally.
I didn’t want someone else to feel as alone as I did
Finding doctors who were willing to listen, learn, and work with me made all the difference.I wish everyone living with dystonia could count on receiving that same level of care. Because I had service providers knowledgeable or willing to learn about dystonia, I have been able to lightly return to administrative work, caring for animals, fitness training and hiking, driving independently, and riding horses with my Mom. Thankfully, throughout everything I have faced, I have also had an incredible support system. My family and friends, treatment providers, the dystonia community, and so many others have stood beside me.
In May 2022, I was involved in a second serious car accident. All of the progress I had fought so hard to make through rehabilitation was diminished.
It was following that accident that I found the Dystonia Medical Research Foundation (DMRF) Canada online. I thought back to those first few months of my own journey and remembered exactly how it felt to be terrified, lost, and alone.
Becoming the Support I Once Needed
That is what motivated me to create and lead the Thompson/Okanagan Support Group in British Columbia. Today, I find hope and purpose in connecting with others with dystonia and building greater awareness of this often-misunderstood disorder. When someone comes to our community looking for answers, understanding, or simply another person who knows what they're going through, I can be there.Because of the support I received, I transformed from someone my treatment providers described as one of the first or most severe cases they had ever encountered, into someone they now refer to as an example of resilience and strength.
If there is one thing I could tell someone who has just been diagnosed with dystonia, it would be this: “Things can get better, and you're not alone.”
My hope for the future is that one day there will be a cure for dystonia. Until then, I want every person affected to have access to knowledgeable care, effective treatments, reliable resources, and the support they need.
I don't want another person to feel as lost and alone as I did before I connected with DMRF Canada.
This year, DMRF Canada is marking 50 years of serving the dystonia community. For five decades, the Foundation has worked alongside people and families affected by dystonia, advancing research, providing education and support, and helping build greater awareness and understanding.
As we mark this important milestone, there is still so much more to do. Continued investment in research is essential. It is the only way to improve treatment and care while continuing the search for a cure.
Please consider making a gift to DMRF Canada today.
Together, we can build on 50 years of progress and help shape what comes next. Your support can help people living with dystonia today while moving us toward a future of more knowledgeable care, better treatments and, ultimately, a cure.
Please consider making a gift to DMRF Canada today.
Together, we can build on 50 years of progress and help shape what comes next. Your support can help people living with dystonia today while moving us toward a future of more knowledgeable care, better treatments and, ultimately, a cure.Sincerely,
Soréyea Apolzer
Thompson/Okanagan, BC Support Group Leader
DMRF Canada
P.S. I know what it feels like to search for answers and wonder what the future will hold. Your gift
today can help someone affected by dystonia find information, support, and hope while investing in the research
needed for a better future. Thank you for your support.
If you would prefer to make your donation through Canada Helps, please click here