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Episode Summary
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
- Â 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
- Â 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 recovery
Claire Snyman
With roots in pharma and biotech product and marketing management, and a unique perspective as both a patient and active patient partner, Claire Snyman helps health systems, researchers, and digital health organizations design with patients—not just for them.
She has led national and provincial patient experience and engagement strategies, embedding the voices of those with lived experience into strategy, policy, and conference discussions.
Claire also advises on integrating health data, personal health records, and digital tools into patient journeys—ensuring that technology enhances, rather than replaces, human connection.
Her mission is to blend compassionate care with data-driven insights to create healthcare experiences that are safe, high-quality, inclusive, interoperable, and deeply human.
She is currently open to:
- Consulting and advisory roles in patient experience, patient engagement, and digital health
- Speaking engagements on patient and public engagement, patient experience, health data, and co-production
- Collaborations at the intersection of health data, engagement, and care delivery
To connect or collaborate: claire@twosteps.ca
Website: https://twosteps.ca/
Mental health resources: https://twosteps.ca/mental-health-resources/
Book link: https://twosteps.ca/books/
Medical Disclaimer:
The content shared on Amplify is for informational and educational purposes only.
Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.
Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.