Two Steps Forward: Living, Advocating, and Rebuilding After a Brain Tumor with Claire Snyman

What happens when your life changes in an instant—and you’re left to navigate uncertainty, fear, and a system that isn’t built around you?In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte sit down with Claire Snyman, a brain tumor survivor, patient advocate, and health data champion.Claire shares the moment everything shifted—from a sudden onset of vertigo to an unexpected diagnosis of a brain tumor. What followed was not just a medical journey, but an emotional and systemic one—marked by uncertainty, gaps in communication, and the need to advocate for her own care while critically ill.Through her story, Claire reveals what it means to “surf the waves of uncertainty,” rebuild life after brain surgery, and transform personal experience into purpose. Today, she is helping reshape how patients access care, understand their data, and take an active role in their health journey.This episode is a powerful reminder that behind every patient is a story—and a system that still has work to do.Why You Should Listen You want to understand the real-life impact of a brain tumor diagnosis beyond the clinical perspective  You’re interested in patient advocacy and the role of caregivers in navigating care  You work in healthcare, research, or policy and want insight into system gaps  You believe patients should have access to their data—and a voice in their care Episode Highlights[00:00:00] Introduction & setting the stage Ursula and Brent introduce Claire Snyman’s story and the realities behind a brain tumor diagnosis [00:04:24] Life before diagnosis Claire shares her busy life as a working mom before everything changed [00:05:18] First symptoms appear Sudden vertigo, migraines, and the first signs that something was wrong [00:07:09] The unexpected diagnosis Hearing “you have a brain tumor” — and realizing the news was about her [00:08:31] Processing the shock alone Claire receives the diagnosis while her husband is out of the room [00:10:53] Living in uncertainty (“watch and wait”) What it means to monitor a brain tumor while fearing every symptom [00:12:48] Surfing the waves of uncertainty Learning how to mentally cope with fear and constant unknowns [00:14:04] Symptoms worsen The turning point when her condition begins to deteriorate [00:16:02] When the system fails A missed diagnosis, lack of documentation, and gaps in care [00:17:24] Medical emergency & urgent surgery Discovering the tumor doubled in size and required immediate intervention [00:18:52] The importance of advocacy and support Why having a caregiver and speaking up can be life-saving [00:21:13] Living with long-term effects Brain injury, memory challenges, and invisible struggles [00:26:54] “Two Steps Forward” mindset How Claire rebuilt her life and found meaning after recovery [00:27:53] Empowering patients through data & advocacy Helping others take ownership of their health and information [00:30:14] Advice for patients and caregivers Track, educate, ask, and manage — a practical framework for navigating care [00:31:11] Finding healing in nature How walking and hiking became part of Claire’s recoveryLinks:Website: https://twosteps.ca/ Mental health resources: https://twosteps.ca/mental-health-resources/ Book link: