I did not set out to become an advocate for Spinocerebellar Ataxia. Like many people, I first came to understand SCA because it touched my own life and my own family.
I was recently diagnosed with SCA6, one form of Spinocerebellar Ataxia. In many ways, my life was planned long before I knew it: the genetic inheritance was already there. The diagnosis did not create the journey; it finally gave it a name.
Not knowing at the time that it was genetically inherited, I asked my neurologist two important questions.
The first was: “Could I have eaten better or exercised more to have avoided this?”
“No, not at all. This train has been coming for you all your life. Only now can we see it coming.”
The second question seemed only logical: “What is the protocol? What is the care? What is the cure?”
That was when I learned there is currently no established treatment capable of slowing the disease’s progression, stopping it, reversing it or curing it.
It was also when I realised that, in practical terms, I had three choices.
I could sit on the tracks and wait for the disease to take over. Or I could wait at the station, knowing the train was coming, enjoying visits from family and friends on the platform but never really leaving.
But I chose a third option.
I decided I would live nowhere near the tracks or the station — and you certainly will not find me spending my time near either of them. If that train wants me, it will have to come and find me somewhere else, enjoying life.
Yes! I will be somewhere else: spending time with family and friends, making music, writing songs, enjoying performances and, whenever I can, going out to see or do something I have never done before. There are still so many places to see, songs to write and moments to enjoy. I intend to pursue them for as long as I am able.
This is not denial. I know what SCA can eventually do, and I do not take the disease lightly. It is a decision to keep living fully; to find joy, create, connect with people and refuse to let a diagnosis become the only thing that defines my life.
Perhaps that is not only an SCA message. None of us — even those who consider themselves healthy — knows exactly how much time we have. We were never given an expiration date, even though we all have one. Make the most of the time in front of you. Love and cherish the people around you. Pursue what matters. Try to leave the stage with as few regrets as possible.
Turning awareness into action
Creating the Spinocerebellar Ataxia Awareness Fund is my first step toward turning that outlook into action. My goal is to connect people with reliable information and help direct support toward meaningful research into this genetic disorder.
As a musician, I plan to use my own talents — such as they are — alongside other artists and supporters who choose to join me, to create uniquely entertaining fundraising concerts, events and opportunities that raise both awareness and badly needed funds.
The mission is to direct net proceeds toward awareness and research programs, ideally here in Canada, that can advance earlier and more accurate diagnosis, deepen our understanding of the different forms of SCA and move us closer to effective treatments and, with all hope, one day a cure.
Until there is a cure, the science is ahead of us — not behind us.
SCA can share movement and coordination symptoms with other neurological conditions, including Parkinsonism. Better awareness and appropriately ordered genetic testing can help doctors and families get clearer answers.
Genetic testing can be costly and is not always easy to access, but it can confirm a diagnosis, put a name to what a family is experiencing, guide care, support family decision-making and connect people with relevant research opportunities.
SCA is often described as rare, which can make it easier to overlook. Yet in my own immediate family, four of us live with it, and two cousins are also affected. That experience leaves me asking an important question: how many people may be living with an inherited ataxia that has not yet been recognised or correctly diagnosed?
Awareness must come first.
Awareness can lead to more accurate diagnosis. Diagnosis can bring understanding. Understanding leads to support. And support helps create hope — especially when it is joined by serious, in-depth research.
If sharing my story helps one person feel less alone, encourages one family to seek answers or brings more attention to research, then it is worth telling.
I love you all, and I thank you dearly for your love and support.