Dušan Stojanovich

“His Light Endures”: Honoring Dušan Through Art and Advocacy

By Dr. Nanette Presswell

My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full of imagination. He had a passion for life and a restless mind that never stopped asking questions, especially about the rare illness he lived with: RFC1 CANVAS, a type of Cerebellar Ataxia.

For over 20 years, Dušan faced this disease with courage and dignity. RFC1 CANVAS gradually took away the coordination of his body, his thinking, and eventually his independence. It is devastating to witness such a condition unfold, both as a loved one and as a doctor. Watching someone you love slowly lose the ability to walk, speak, and even swallow is something no family should have to endure.

After Dušan passed away in 2022, I knew I needed to honor his legacy in a way that reflected who he was: an artist, a deep thinker, and someone who believed in the power of storytelling. That’s how Stardust was born—a visual tribute and exhibition showcasing the vibrant paintings he created, most of them during the final decade of his life, when his physical abilities were already so limited. Through his art, his spirit continues to shine.

This exhibition, which was featured from June-September 2025 in Melbourne, Austrailia was also my way of raising awareness and advocating for more research into RFC1 CANVAS and other Hereditary Ataxias. Although the genetic cause of RFC1 was only discovered in 2019, we still don’t fully understand how it leads to the damage seen in this condition. That’s where my focus lies now—encouraging scientific enquiry into what causes this neurodegeneration, and ultimately how it might be stopped.

We are learning more every day about the genetic drivers of these conditions, and for many ataxias that have been studied longer, we’re beginning to understand how they affect nerve cells and what pathways might lead to treatment. My hope is that RFC1 CANVAS will follow that path too, and that people like Dušan—and his three brothers, two of whom are also affected—will one day have more answers, more support, and more hope.

This journey has become about more than just honoring Dušan’s memory. It’s about changing the trajectory of these cruel illnesses—for families like mine, and for the broader Ataxia community around the world.

To everyone working toward that shared goal: thank you. You are lighting the path forward, and I am grateful.

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