Episode Summary

In this episode of Amplify: Elevating Patient Voices, hosts Ursula Mann and Anne Marie Hayes are joined by Jeff Beach, President & CEO of Asthma Canada.

Jeff shares his deeply personal journey—from a childhood marked by severe allergies to a life-changing asthma diagnosis in adulthood—and how that experience shaped his path into patient advocacy and leadership.

The conversation explores the realities of living with asthma, including common misconceptions, the importance of proper disease management, and what “good control” truly looks like. Jeff also provides a behind-the-scenes look at leading a national patient organization—navigating funding, maintaining independence, and ensuring patient voices remain at the center of healthcare decisions.

With World Asthma Day approaching, this episode is both timely and powerful—reminding us that asthma is not just occasional wheezing, but a chronic condition that requires awareness, action, and advocacy.

Why You Should Listen

• Understand the difference between controlled and uncontrolled asthma
• Learn how lived experience shapes healthcare leadership and advocacy
• Discover why asthma is often misunderstood—and underestimated
• Hear practical insights on managing triggers and improving daily life
• Get inspired by stories of resilience, including patients who went from struggling to walk to running marathons
• Gain perspective on how patient organizations operate, stay independent, and drive change

Episode Highlights

00:01 – Introduction to Amplify & today’s conversation
Setting the stage: patient voices and why this discussion matters.

04:39 – Jeff’s journey with asthma
From childhood allergies to an unexpected diagnosis in adulthood.

07:21 – The reality of diagnosis
Why asthma can be difficult to identify—especially in children.

11:22 – Rescue vs. controller medication
What proper asthma management really looks like.

13:14 – Signs your asthma is not controlled
Common misconceptions and warning signs to watch for.

14:12 – Can people with asthma stay active?
Breaking the myth—why movement is part of better control.

18:38 – From lived experience to leadership
Jeff’s path into patient advocacy and nonprofit leadership.

23:36 – Funding, independence, and trust
How patient organizations operate and stay patient-centered.

27:53 – The role of patient voices in healthcare
Why advocacy and storytelling drive real change.

31:17 – Looking ahead: World Asthma Day
Shifting from awareness to taking asthma seriously.

Links & References

• Asthma Canada: https://asthma.ca/
• Asthma Canada YouTube: https://www.youtube.com/user/AsthmaSocietyCanada
• Asthma & Allergy HelpLine: https://asthma.ca/what-we-do/helpline/
• Patient Voice Partners: https://patientvoicepartners.com
• Medlior Health Outcomes Research: https://www.medlior.com/
  
  

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—sho

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.