CANVAS-Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome

In this episode of the ICU podcast, we’re exploring CANVAS—short for cerebellar ataxia, neuropathy, and vestibular areflexia syndrome—a rare, progressive neurological condition that disrupts the very systems our bodies rely on to stay balanced and oriented. CANVAS affects the cerebellum, sensory nerves, and inner ear balance system all at once, creating a “triple hit” that can lead to unsteadiness, dizziness, vision changes with head movement, and worsening coordination over time. Although researchers have only recently begun to understand its genetic cause, much remains unknown about how it develops and how best to manage it. Today, we’re joined by Celeste Suart, Patient Engagement Director at the National Ataxia Foundation, and Denise Luken, who is living with CANVAS, to share both the clinical perspective and the lived experience of navigating this complex and often misunderstood condition.Guest biosCeleste Suart, PhD, is the Patient Engagement Director for the National Ataxia Foundation. She earned her PhD in biochemistry at McMaster University, where her research focused on Ataxia, science communication, and adult education. Celeste leads the development of various patient-facing research communications, educational materials, and informational webinars. She also acts as a liaison between NAF, researchers, clinicians, industry professionals, and the ataxia community. Celeste strongly believes in the empowering nature of education. She is committed to supporting the agency of Ataxians and their families through access to research information and opportunities.   Denise lives in North Carolina with her husband of nearly 25 years, Bill, and their two dogs. After an active life that included raising two children, working in IT, and enjoying sports like tennis and skiing, she began experiencing balance issues, falls, and coughing in her early 50s. Following years of testing, she was first diagnosed with idiopathic ataxia, and later with RFC1-related CANVAS. Now in her mid-60s, Denise stays active with regular exercise and physical therapy, using a cane or rollator for support.