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.

• 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

• [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

Links:

• Website: https://twosteps.ca/
• Mental health resources: https://twosteps.ca/mental-health-resources/
• Book link:

Kidney disease is often called a “silent illness”—but for those living with it, the reality is anything but quiet.

In this powerful episode of Amplify: Elevating Patient Voices, Ursula Mann joined by Christine Pisapia and special guest Susan McKenzie, a kidney transplant recipient and leading patient advocate. Sue shares her deeply personal journey—from delayed diagnosis and emergency dialysis to receiving a life-changing transplant from her sister-in-law.

Together, they unpack the hidden challenges within the healthcare system, including missed early detection, long donor testing timelines, and the emotional toll of dialysis. The conversation also shines a light on the transformative impact of peer support through the Transplant Ambassador Program, and why a “transplant-first” approach could improve both patient outcomes and healthcare costs.

This episode is a candid, eye-opening look at the realities of kidney disease—and a hopeful call to action for better awareness, advocacy, and patient-centered care.

🎧 Why You Should Listen

• Gain a real-life perspective on kidney disease, dialysis, and transplant
• Understand the gaps in early diagnosis and healthcare systems
• Learn why living donor transplants are often the best option
• Discover the emotional and mental health impact of dialysis
• Be inspired by powerful patient advocacy and peer support initiatives

⏱️ Episode Highlights

[00:00:00] – Introduction to Kidney Transplant Conversations
Ursula and Brent introduce the episode and welcome Christine Pia and guest Susan McKenzie.

[00:02:00] – Sue’s Personal Journey with Kidney Disease
Family history, early warning signs, and the long road to diagnosis.

[00:04:30] – Delayed Diagnosis and Missed Opportunities
How lack of early intervention led to disease progression.

[00:06:00] – Finding a Living Donor
Challenges of genetic conditions and the emotional journey of donor matching.

[00:08:30] – What Donor Testing Really Involves
A deep dive into the extensive and often lengthy donor evaluation process.

[00:12:00] – Why Preemptive Transplant Matters
The missed opportunity to avoid dialysis and why timing is critical.

[00:14:30] – The Reality of Dialysis
Breaking the myth: why dialysis is physically and emotionally exhausting.

[00:17:00] – The Hidden Struggles Patients Face
Living with illness while trying to maintain a “normal” life.

[00:18:30] – The Power of Peer Support
How the Transplant Ambassador Program is changing patient experiences.

[00:24:00] – Advocacy and the ‘Transplant First’ Movement
Why systemic change is needed to prioritize transplants over dialysis.

[00:26:00] – The Cost of Dialysis vs. Transplant
A compelling case for better healthcare investment decisions.

[00:29:00] – Barriers to Living Donation
Why willing donors sometimes don’t make it through the system.

[00:32:00] – Debunking Myths About Donor Risk
Understanding the real (and minimal) risks of kidney donation.

[00:33:30] – What People Don’t Know About Kidney Disease
Why awareness and education are still lacking.

[00:34:00] – A New Podcast to Amplify Kidney Patient Voices
Sue shares her upcoming initiative to educate and support patients.

[00:35:00] – A Heartwarming Ending
Sue reflects on life after transplant—and time with her twin granddaughters.

Want to Share Your Voice?

If you’re a patient or caregiver, you can join Patient Voice Connect to share your experiences and help shape healthcare here.

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In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte sit down with Sandra Walker, venture capital partner at Hard Climate Venture Studio and founder of Viacern.

Sandra has spent decades working across global healthcare systems—spanning pharmaceuticals, biotechnology, diagnostics, venture capital, and now climate innovation. Throughout her career, she has been drawn to tackling the kinds of complex, messy problems that require systems thinking, collaboration, and bold leadership.

The conversation explores how leaders make decisions within complex systems, why unconscious bias often shapes those decisions, and how personal experiences—like caregiving—can influence how we approach change.

Sandra also shares her journey as a remote caregiver for her father during a critical health period, highlighting the emotional and logistical challenges many caregivers face but rarely talk about.

From healthcare leadership to climate innovation, this episode examines how different systems intersect—and why solving tomorrow’s healthcare challenges requires thinking beyond traditional boundaries.