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.

Join our email list to get new episode updates

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.

Episode Summary

In this episode, Ursula Mann is joined by Christine Pisapia for a thoughtful conversation with Sigrun Watson, a healthcare leader and entrepreneur passionate about improving women’s health and reducing stigma around mental health.

Sigrun shares her personal journey with perfectionism, an eating disorder, depression, and what it meant to seek help—and why storytelling and community can be powerful first steps toward healing. The conversation also explores gaps in women’s health education and care, including pelvic floor health and menopause, and what Sigrun is building through her work with UROSPOT to make pelvic health support more accessible and modern.

Why you should listen

Listen if you want:

• A real, compassionate conversation about mental health, perfectionism, and asking for help
• Insight into why women’s health is still under-researched and under-discussed
• A clearer understanding of pelvic floor health, menopause-related changes, and why symptoms are often normalized
• A leadership perspective grounded in empathy, lived experience, and patient-centered care
• Hopeful reminders that you’re not alone—and that support can start with hearing someone else’s story

Episode Highlights

[00:00:00] Introduction
Ursula and Brent welcome listeners to Amplify – Elevating Patient Voices and introduce the themes of women’s health, mental health, and leadership.

[00:03:00] Meet Sigrun Watson
Sigrun shares her Icelandic roots, career journey from dietitian to pharmaceutical executive, and her passion for healthcare transformation.

[00:06:11] Perfectionism & Eating Disorders
Sigrun opens up about her struggle with bulimia, the connection between perfectionism and eating disorders, and how mental health shaped her career path.

[00:08:54] The Impact on Young People
Christine and Sigrun discuss perfectionism in children, early warning signs for parents, and the pressures of social media.

[00:12:15] Depression & Dark Thoughts in University
Sigrun shares her experience with depression during first-year university and why early intervention and support matter.

[00:14:03] The Power of Storytelling & Unsinkable
Sigrun discusses her work with Unsinkable, the healing power of shared stories, and how vulnerability creates connection and hope.

[00:18:52] Mental Health Access & Affordability
The conversation explores barriers to accessing care and why hearing others’ lived experiences can be a powerful first step.

[00:22:45] Women’s Health Gaps
Ursula transitions the discussion to women’s health—highlighting stigma, lack of education, and systemic research gaps in menopause and midlife care.

[00:23:19] Sigrun’s Menopause Journey
Sigrun shares her personal experience with perimenopause and menopause, and how it reshaped her perspective on healthcare.

[00:27:55] Pelvic Floor Health Explained
A deep dive into pelvic floor muscle function, why issues like bladder leakage are common but under-discussed, and how hormonal changes accelerate muscle weakening.

[00:30:36] What UROSPOT Does
Sigrun explains the technology behind pelvic floor rehabilitation and how non-invasive electromagnetic therapy works.

[00:33:41] The Reward of Being Close to Patients
Sigrun reflects on moving from corporate healthcare into entrepreneurship and the profound impact of working directly with patients.

[00:34:43] Closing Reflections
Ursula and Christine thank Sigrun for her candor and leadership in advancing mental health awareness and women’s health innovation.

Want to Share Your Voice?

If you’re a patient or caregiver, you&

Episode Summary

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Brent Korte speak with Reg Joseph, CEO of Health Cities, about how community-based care, patient empowerment, and system design shape real healthcare outcomes.

Reg shares insights from his background in biotechnology, finance, and healthcare innovation, explaining why technology alone cannot fix healthcare challenges. The conversation highlights the importance of redesigning care models, supporting patient self-management, and integrating healthcare into communities—especially in rural and underserved settings.

Drawing from real-world examples and personal experience as a patient, this episode explores prevention, data use, access to care, and why the future of healthcare must extend beyond hospitals and clinics.

Why You Should Listen

• Learn why community-based healthcare is critical to better outcomes
• Understand how innovation should be driven by patient and system needs, not technology
• Hear practical examples of remote monitoring and self-management in action
• Gain insights into rural healthcare access and decentralized care models
• Discover how patients can self-advocate and partner with clinicians
• Explore how responsible health data use can improve community wellness

Episode Highlights (with Timestamps)

• [00:00–01:36] Introduction to Reg Joseph and the focus on community-driven healthcare
• [02:06–04:21] Reg’s transition from biotech and finance into healthcare systems
• [04:21–05:14] Why healthcare innovation often fails due to system complexity
• [05:47–07:18] Designing care models before introducing technology
• [07:18–08:21] Meeting patients where they are to improve outcomes
• [08:36–11:22] Remote monitoring, rural care challenges, and patient self-management
• [11:22–12:32] Prevention, education, and long-term wellness
• [12:46–14:17] A personal patient experience inside the healthcare system
• [14:40–17:35] How patients can self-advocate and engage clinicians effectively
• [17:35–19:46] What healthcare can learn from banking and consultative models
• [20:01–22:31] Simplifying complex systems through community collaboration
• [22:31–24:37] Rural Alberta as a model for integrated community care
• [25:32–29:10] Decentralized care, technology, and access beyond urban centers
• [29:55–31:03] Looking ahead: leadership, recovery, and personal goals
• [31:03–32:01] Final reflections on patient-centered, community-based healthcare

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.

Join our email list to get new episode updates here.

Together, we can bring more voices to the table and shape the future of healthcare.

Share this episode, leave a review, and follow Patient Voice Partners on LinkedIn to help amplify more voices.

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 a

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Barry Liden are joined by Barry Stein, President and CEO of Colorectal Cancer Canada, for a powerful and deeply personal conversation about colorectal cancer, early screening, and why patient voices matter in shaping healthcare systems.

Barry Stein shares his remarkable journey—from a late-stage colorectal cancer diagnosis in the mid-1990s, through multiple surgeries and innovative treatments, to becoming one of Canada’s most influential patient advocates. His story highlights how determination, shared decision-making, and advocacy can drive meaningful change at both the individual and system level.

Together, the hosts explore why colorectal cancer screening is so critical, how screening programs have evolved across Canada, and the real-world barriers patients face when it comes to testing and access to care. The conversation also dives into the importance of patient engagement in research, clinical trials, and health technology decision-making—reminding us that data alone is never enough without lived experience.

This episode is a compelling reminder that patients are not just stakeholders in healthcare—they are essential partners.

In This Episode, You’ll Hear About:

• Barry Stein’s personal experience with stage IV colorectal cancer and what it taught him about advocacy
• Why early detection and screening save lives
• The role of FIT testing and colonoscopy in colorectal cancer screening
• How patient voices influence policy, access, and innovation in healthcare
• Why patient preference and lived experience matter in research and decision-making
• The long-term impact of advocacy—for individuals, families, and health systems

How is patient engagement evolving in one of the world’s fastest-changing healthcare regions?
In this episode, Ursula Mann and Christine Pisapia sit down with Mostafa Najib, a pharmaceutical leader with more than 20 years of experience across the Middle East.

Together, they explore how patient expectations are shifting, how technology and policy are reshaping access to innovation, and why meaningful patient insight is still one of healthcare’s biggest challenges—globally.

Why You Should Listen

• To gain a global perspective on how patient voices are being integrated into healthcare decision-making
• To understand what’s changing in the Middle East—and what remains surprisingly similar worldwide
• To hear real-world reflections from inside the pharmaceutical industry
• To explore how patient insight can shape better strategy, access, and outcomes
• To consider what the future of patient-centered healthcare could look like across systems

Episode Highlights

00:03:32 — Entering the pharmaceutical world
How Mostafa found his path into pharma and why the commercial side captured his interest.

00:05:03 — The rise of patient engagement in the Middle East
A look at how patient expectations and behaviors have shifted over the last two decades.

00:06:00 — The limits of traditional patient programs
Why awareness and access initiatives still fall short of capturing what patients truly value.

00:07:26 — When assumptions miss the mark
How physician perceptions sometimes diverge from what patients actually want or fear.

00:08:42 — Shared global patterns
Christine reflects on similar trends in North America—from “Dr. Google” to increasing patient advocacy.

00:09:05 — The evolving role of patient groups
Why patient associations are more established in Europe and North America than in the Middle East.

00:11:04 — Faster access to innovation
How regulatory modernization is closing the gap between U.S. approvals and local availability.

00:12:23 — Digital transformation (and no more faxing)
A lighthearted look at how digital health infrastructure has rapidly advanced in the region.

00:14:35 — What’s missing from patient insight
The everyday realities, symptoms, and priorities that often never reach the healthcare system.

00:17:09 — Shrinking visit time
How shorter appointments impact patient–physician communication and understanding.

00:20:20 — Designing a connected ecosystem
Mostafa imagines a future where patients, providers, payers, and pharma collaborate more seamlessly.

00:21:43 — When patient feedback redirects strategy
A real-world example of how one insight changed the course of a major investment.

00:25:30 — Surfing, seasons, and perspective
A glimpse into Mostafa’s life outside of work—and the waves he’s chasing next.

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.

Join our email list to get new episode updates here.

Together, we can bring more voices to the table and shape the future of healthcare.

Share this episode, leave a review, and follow Patient Voice Partners on LinkedIn to help amplify more voices.

Welcome to the launch episode of Amplify, the podcast powered by Patient Voice Partners, where real stories spark bold conversations. In this episode, host Ursula Mann is joined by her co-hosts Brent Korte, Barry Liden, Anne Marie Hayes, and Christine Pisapia as they explore what patient engagement really means - and why it’s personal, not just professional.

Together, they share stories of caregiving, lived experiences, and the ways patient voices can influence decisions across healthcare - from policy and regulation to research and clinical care. Learn why listening to patients, caregivers, and healthcare changemakers matters, how insights from lived experiences translate into action, and the impact of truly inclusive patient engagement.

This episode also introduces Amplify’s mission: to provide a platform that elevates patient voices, fosters understanding, and inspires listeners to think differently, listen differently, and take action in their own healthcare ecosystems.

What You’ll Learn:

• Why patient engagement is personal for every member of the healthcare ecosystem
• How patient perspectives can influence business, regulatory, and clinical decisions
• The challenges and opportunities in translating patient experiences into meaningful outcomes
• Ways listeners—patients, caregivers, clinicians, and innovators—can contribute to change

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.

Join our email list to get new episode updates here.

Together, we can bring more voices to the table and shape the future of healthcare.

Share this episode, leave a review, and follow Patient Voice Partners on LinkedIn to help amplify more voices.