Episode Summary

In this deeply moving episode of Amplify: Elevating Patient Voices, we sit down with Charles Cook—a two-time deceased donor transplant recipient who received a life-saving heart transplant in 2016 and a kidney transplant in 2017.

Charles shares his extraordinary journey—from being diagnosed with a genetic heart condition at 17, to surviving a massive stroke, to enduring years of recovery and ultimately facing end-stage heart failure. His story is one of resilience, faith, and an unshakable commitment to “keep banging”—his personal mantra for overcoming life’s toughest obstacles.

In recognition of National Organ & Tissue Donation Awareness Week, this conversation highlights the life-saving impact of organ donation, the importance of representation in healthcare, and why Charles has dedicated his life to giving back through advocacy and patient support.

Why You Should Listen

• Hear a powerful, real-life story of survival against overwhelming odds
• Understand the true impact of organ donation—from a recipient’s perspective
• Learn how resilience and mindset can shape outcomes in the face of adversity
• Discover the importance of advocacy and representation in healthcare systems
• Be inspired to take action and help amplify patient voices

Episode Highlights

• 00:00 – Introduction to Charles Cook and his powerful story
• 03:30 – A life-changing diagnosis at 17—and losing a dream overnight
• 12:30 – A sudden stroke and a near-death experience on the highway
• 21:00 – Facing heart failure and the reality of limited time
• 23:30 – The life-saving role of an LVAD as a bridge to transplant
• 27:00 – “Keep Banging”: the mindset that carried Charles through
• 31:00 – Advocacy, representation, and addressing disparities in care
• 38:00 – Life after transplant and finding purpose in giving back

Links & References:

• ACB Organ Health YouTube
• Transplant Ambassador Program
• Kidney Foundation

About the Guest

Charles Cook is a two-time organ transplant recipient, receiving a heart transplant in 2016 and a kidney transplant in 2017 at Toronto General Hospital.

He is an active volunteer and advocate, working with organizations such as the Kidney Foundation of Canada, the Transplant Ambassador Program, and the African Caribbean and Black Organ Health initiative.

Driven by gratitude for the “two gifts of life” he received, Charles is committed to paying it forward by supporting patients, raising awareness, and advocating for more equitable access to transplant care.

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.

Episode Summary

In this powerful episode of Amplify: Elevating Patient Voices, Harjeet Kaur shares her journey through an ultra-rare stage IV blood cancer—subcutaneous panniculitis-like T-cell lymphoma (SPTCL)—and the life-altering moments that followed. From months of unexplained symptoms and relentless advocacy for answers, to undergoing a stem cell transplant during the height of COVID-19, Harjeet’s story is one of resilience, courage, and survival.

But her journey goes beyond the medical. As a South Asian woman, Harjeet opens up about the cultural silence surrounding cancer, the stigma she faced, and the emotional weight of navigating illness without open conversations. Today, she is using her voice to break that silence—advocating for awareness, representation, and more inclusive support systems for patients from underrepresented communities.

Why You Should Listen

• To hear a deeply human story of survival, strength, and transformation
• To understand how culture and stigma can shape the cancer experience
• To learn why patient advocacy—especially self-advocacy—can be life-saving
• To gain insight into the challenges faced by young adults and immigrants navigating healthcare systems
• To be inspired by how one voice can create impact, build community, and drive change

Episode Highlights

00:00 – Introduction to Harjeet’s ultra-rare cancer journey

03:39 – Early symptoms and being dismissed as “just a viral illness”

06:02 – Months without answers—and fighting to be heard

07:50 – The life-changing moment: stage IV cancer diagnosis at 32

10:37 – Emotional impact and silent suffering

14:47 – “I want to live”: facing limited treatment options

15:47 – Choosing a stem cell transplant—and her brother as donor

17:37 – Transplant during COVID and complete isolation

19:32 – Cultural stigma and silence around cancer in South Asian communities

24:47 – Turning pain into purpose: advocacy and building Chai & Hope

Resources & Links

• Patient Voice Partners: https://patientvoicepartners.com
• Young Adult Cancer Canada (YAC)
• Canadian Cancer Society
• Harjeet Kaur on Instagram: https://www.instagram.com/harjeetkaur
• Chai & Hope (South Asian Cancer Community) https://www.instagram.com/chaiandhope

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.

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: