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 bios

Celeste 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.

In today’s episode of the ICU Podcast, we explore the fascinating connection between gut health and vestibular disorders—and why taking care of your digestive system might be an overlooked piece of your wellness puzzle. What happens in your gut doesn’t always stay in your gut: when the lining of the intestine becomes compromised, it can lead to systemic inflammation, nutrient malabsorption, and an imbalanced microbiome—all of which may influence vestibular symptoms like vertigo, dizziness, and balance issues. The gut is also a major producer of neurotransmitters that affect mood and nervous system balance, and imbalances there could potentially affect how your brain processes vestibular signals. Today, we’ll break down what gut health really means, how it intersects with vestibular function, and practical takeaways you can consider as part of your overall health strategy.

Guest Bios

Leigha Kingsley is an actress, writer, producer, and director. Her acting credits include films starring Will Ferrell and Woody Harrelson, and TV shows like Criminal Minds. She is a champion for female-driven stories, and her scripts have been finalists for Sundance, HBO Project Greenlight, and the New York Television Festival. Leaha has been experiencing Vestibular Migraines for the past year. She is still new to this journey, but one thing she has noticed is that the foods she consumes have a direct correlation with how well her brain and vestibular system operate.

Carla Alpert, FDN-P, NBC-HWC, FMCHC, is a trauma-informed Board-Certified Health & Wellness Coach and Functional Medicine Practitioner. She focuses on gut health and how it affects overall health because, unlike Las Vegas, what happens in the gut doesn’t always stay in the gut. Symptoms become the way your body tells you there’s an imbalance. Many times, problems that seem unrelated to gastrointestinal health, such as brain fog, fatigue, anxiety, and even skin issues, can stem from an imbalance in the microbiome. Carla supports her clients in uncovering the root cause(s) of digestive problems and other chronic symptoms, restoring overall health and well-being. Her mission as a coach is to help her clients explore and discover solutions to live a life with renewed vitality, radiant health, authenticity, and purpose—without the overwhelm. Learn more about Carla here.

In this episode of the ICU Podcast, we explore how humor and gratitude can become powerful tools for coping with chronic vestibular disorders. Living with dizziness, vertigo, or imbalance can often feel isolating and overwhelming—but laughter and thankfulness can help restore balance to both body and mind. Research shows that humor can lower blood pressure, reduce stress hormones, boost immune function, and even trigger endorphins—our body’s natural painkillers. Similarly, practicing gratitude has been linked to better sleep, improved mood, and enhanced overall well-being. Our guests—a vestibular patient who’s found resilience through laughter, and health coach Hilary Russo, creator of the “HIListic” approach to mindful self-compassion—share how humor and gratitude have transformed their healing journeys and offer practical ways to bring more lightness and appreciation into everyday life.

Guest Bios

Mary Ziegler was once reliable, hard-working, and a dedicated wife and mother. But when Meniere's disease and vestibular migraine hit, she had to leave her job and stop driving. One of the things Mary misses the most is helping other people. She misses parties with friends and family. But she has devised ways to dwell in joy and gratitude. She likes being a VeDA Ambassador because it allows her to help people in Chicago, where she lives, and all over the world. She is grateful for her family and friends, and for the doctors who recognize her as an expert in her condition.

Hilary Russo is a certified trauma-informed holistic mental health practitioner and health coach, one of only 50 certified Havening Techniques® Trainers globally, and one of the first 100 Certified Havening Practitioners in the United States. Due to her work in Havening and trauma-informed care, Hilary is a recommended referral partner with the nationally recognized Amen Clinics for brain health. Her extensive background in media and military life gives her a unique perspective on working with secondary trauma, chronic stress, and burnout. She is the host of the globally top-rated podcast HIListically Speaking® and creator of the HUG it Out® Method, which reminds you to access self-healing through Humor, Understanding, and Gratitude and be a Pioneer Practitioner™of your own life. Connect with Hilary at hilaryrusso.com, on social @hilaryrusso, or on her Substack, The Brain Candy Blueprint.