More Than Our Story
Casey Kidson
Casey Kidson is a triathlete living and racing with dystonia. She launched the “100 Strong” campaign to secure support for her 2026 paratriathlon season, including race entries, travel expenses, and adaptive equipment. She’s an Olympic hopeful for the 2028 LA Paralympic Games and an ambassador for both the Dystonia Medical Research Foundation of Canada, launching the “Dyfying Dystonia Series,” and AdaptX, a company focused on making fitness and sport more accessible. She’s proof that limits aren’t the end.
Highlights
Growing up with dystonia, I was always trying to achieve and push where I could, and I try to stay as positive as I can.
It’s just hanging on to hope and not letting it go.
Dystonia is a neurological condition. It causes involuntary muscle contractions, leading to abnormal positioning and movements. I have Myoclonus dystonia, which is a genetic form of dystonia. There are three kinds of dystonia. There's primary dystonia, genetic dystonia, and then secondary dystonia, which could be caused by a stroke or brain injury.
There are approximately 50,000 Canadians diagnosed with dystonia and living with dystonia.
I started having symptoms around age three, but wasn't actually diagnosed until age 15, so there was a big gap where we didn't quite know what condition I had.
A lot, unfortunately, had to do with the lack of research and knowledge about dystonia. It was less known or heard of back then… Now we're building on research, which is super, incredible, and very important.
When I was three, my parents started to notice that I couldn't really sit still… I was constantly moving.
It started with the twitching, and (being) unable to stay still. Then it gradually progressed to (my) neck pulling to one side… Some teachers would reach out to my parents or pediatricians (thinking), maybe it's Tourette's, so there was that misdiagnosis.
There is unfortunately no cure at this point, but there are treatments.
I've tried different medications over the years, and unfortunately, a lot of the side effects from the medications in pill form… weighed a little bit heavier than the results that I was getting.
Botox treatment is a common treatment for many dystonia patients. So right now, that is my treatment course. I get injections four times a year. I get (it) usually in my neck, up my neck, down my traps a bit, and the doctor will use an ultrasound machine to see where the muscles are firing most.
There's also deep-brain stimulation (DBS), which is a somewhat common treatment that some patients will use. I did travel to London, Ontario, to speak to a neurologist there about my options for that. Currently, with my physical activity level within triathlon, it wasn't a route for me at this point, but I could be a potential candidate for it.
Through school, I looked like that shier child at the back of the room… I'd interact with my friends and stuff like that, but when it came time to find a space in the classroom, I'd usually sit off to the side or the back to try and hide and control the tremors and fit in.
That was extremely challenging. I'd try to fit in, but I would stay kind of quiet. And then through high school and college years, I started to come out more of my shell. I was always super active, involved in activities and sports. That was my happy place.
In college, I reached out and accessed support systems within the college, and it was super beneficial.
I did my first mile race in 2015, and after that, I was just like, ‘Wow.’ I kept going.
Once I made my connection with DMRF (Dystonia Medical Research Foundation) of Canada, and established Defying Dystonia in the beginning 2017, that was my spark. That's what changed everything for me.
A friend of mine did an Ironman. And when I saw her race, I was like, ‘Wow, that looks incredibly difficult and challenging, but what an accomplishment.’ So I signed up for my first Iron Girl, my Iron Girl race in Summer of 2016.
I registered in March. I didn’t own a bike… I just kind of built over the kind of Spring and into the Summer, and it was just absolutely incredible competing in that first triathlon.
Even on those difficult days, I'm just pushing to get to that goal, which I found amazing, and being out there really helps, it really helps my dystonia, the physical activity part of it.
On the PTS4 classification:
It's part of the paratriathlon category. It's for moderate to mild impairments for individuals who may have a neurological condition such as mine, or maybe have amputation of a hand or part of an arm, or part of a leg. So we'll swim, bike, run as we are. But we may have those adaptations or modifications, such as to our bikes. My bike may be set up slightly different with my aero bars. And then for the run, we're allowed to use something to help and assist to get through.
On competing in the World Triathlon Para Cup in Magog, Quebec, last year:
It was great. It was a fantastic experience. I had just actually received my international classification. So that was my first race. I just felt like I belonged, and I did quite well for my first one… I finished fourth in that race, so that gave me points and standings to go into the World Triathlon Standings, which was great.
I started the 100 Strong campaign to raise funds for my training and my goals within my triathlon season. I started this campaign as a way to reach out to businesses in and around Ontario, to help support that. So with each $100 donation, they become part of the 100 Strong campaign and support my triathlon season.
On being a hopeful for the 2028 LA Paralympic Games:
That's been my long-term goal since I started with Paratriathlon Ontario and the high-performance development team with Triathlon Canada.
My coaches have been fantastic… we're back on track, it's sticking to the plan, but also having acceptance and grace in the sense that it might not always go as planned. That's the biggest point for me, accepting that. I could be clear-cut, “I'm going there,” but unfortunately, we all know that those roads are not always straight.
You're going to have turns, bumps, and hills. Just leading with an open mind, being present in your day-to-day training and goals, and then just being positive, knowing yourself, and trusting the training, because going into my first race in just a few weeks, I am putting a lot of trust in myself and knowing that I'm capable of coming up to that race, even though I've had those setbacks.
On her role as an AdaptX ambassador:
AdaptX is a nonprofit, and their focus is on making fitness accessible. They're out of Lancaster, Massachusetts, and I'm one of their few ambassadors for their initial season of having ambassadors. Many of them are from the states, so I'm one of the only Canadians. We worked together to promote accessible fitness for all, especially those with disabilities.
AdaptX has been fantastic in supporting my journey, and they helped to provide support along the way with coaching, and they also provide training, training gear, and stuff for us, which is fantastic, as well as funding to help support our races and the fees that we may pay throughout the season.
AdaptX also runs multiple unified 5Ks throughout the states, (and) right now, we're hoping to bring one to Canada. That's where you can run, walk, wheel; so people of all abilities come together to raise funds and complete a 5K together. So they're a fantastic organization, and I'm super grateful for their support.
On what dystonia has taught her:
I like to say ‘defy the storm’. So any of those little storms that you may be experiencing, whether it be a setback, a medical challenge, anything like that, that you do have the ability to push through to the other side, where that sun will be shining through that storm and staying strong through your journey.
Limitations don't define us; we can push through.
What she would say to somebody receiving a dystonia diagnosis:
I found keeping your connections and your voice heard is very, very important… As challenging as it is, use your voice and make yourself heard and your needs heard as well. Listen and reach out to your support teams, your family, your friends, and your care providers. Physical activity, as hard as it is sometimes, even through small breaks, five, ten minutes of little exercises can make a big difference.
Dystonia Medical Research Foundation of Canada
Welcome to Dystonia Medical Research Foundation of Canada.
The mission of the Dystonia Medical Research Foundation (DMRF) Canada is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well-being of affected individuals and families. DMRF Canada is a registered non-profit Canadian charity governed by a volunteer Board of Directors.
DMRF Canada works in partnership with the Dystonia Medical Research Foundation in the United States to ensure funding of the best and most relevant dystonia medical research worldwide and partners with the other like-minded research organizations to fund excellent dystonia research in Canada.
Dyfying Dystonia Series
Casey Kidson, one of DMRF Canada’s Dystonia Ambassadors and a great ambassador for dystonia, has had an incredible athletic journey. She continues to ‘dyfy’ dystonia by swimming, biking and running towards many achievements that both athletes and non-competitors alike admire in awe.
Thanks to the Davies Charitable Foundation, Casey, in partnership with DMRF Canada, launched the Dyfying Dystonia Series in 2020.
Triathlon Ontario ParaTriathlon
Paratriathlon is a category of triathlon (swim, bike, run) for athletes with a physical disability. Athletes may use assistive devices, such as handcycles, tandems bicycles, racing wheelchairs and prosthetics to accommodate different types of impairments. Paratriathlon provides an inclusive and competitive race environment for athletes to showcase their endurance, strength, adaptability and talents.
Triathlon Canada’s National program continues to build and grow with our national team athletes being among the top medal winners in the World; Stefan Daniels (PTS5) and Leanne Taylor (PTWC). Triathlon Canada hosts an annual training camp alongside open paratriathlon nationals for development athletes across the nation.
AdaptX
Making Fitness Accessible
AdaptX creates access to better health and fitness for individuals with disabilities through education, research, advocacy, and scholarship.
100 Strong
Casey launched the 100 Strong campaign to raise funds for her training and goals within her triathlon season. The “100 Strong” campaign reaches out to businesses in and around Ontario for their support. With each $100 donation, they become part of the 100 Strong campaign and help support her triathlon goals.
Dogs and Cats of the Dominican Republic
Our mission is to significantly improve the health and well-being of the dogs (Coconut Hounds) and cats (Coconut Cats) living in the Dominican Republic. This mission is being accomplished through several programs including; spay/neuter, emergency vet care, providing preventive medicines, community outreach, and education. We could not do this important work without the commitment and compassion of our volunteers, supporters, community, and donors. Gracias!!!
Daniel
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