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.

Episode Summary

In this powerful episode of Amplify, hosts Ursula Mann and Christina Pisapia speak with Erin Paterson, a writer, caregiver, and advocate whose life was transformed by Huntington’s Disease (HD).

Just as Erin and her husband were preparing to start a family, she learned a long-kept family secret: her grandmother may have died from Huntington’s. This revelation pushed Erin into rapid genetic testing, where she tested gene-positive. What followed was a decade-long struggle with depression, infertility, caregiving responsibilities, and fear of the future.

But Erin rebuilt her life through writing, community, caregiving, and storytelling. Today, she advocates globally for people living with rare diseases and cares for her father, who is now in his 80s with late-onset HD. Her story is one of courage, connection, and the quiet beauty of finding purpose—even when living with uncertainty.

Why You Should Listen

This episode is for you if you:

• Work in healthcare and want to understand how to deliver compassionate, human-centered care for people with neurological and rare diseases.
• Support a loved one with chronic illness and want to hear how another caregiver navigates emotional, logistical, and generational challenges.
• Are navigating inherited risk, fear of the unknown, or the emotional weight of a diagnosis—personally or within your family.
• Believe in the power of storytelling, community, and advocacy to transform pain into purpose.
• Want to hear how small acts of joy and presence can sustain connection—especially when speech and movement change.

You’ll walk away with a deeper understanding of Huntington’s disease, the importance of slowing down in care settings, and how love and community can reshape even the hardest realities.

Episode Highlights

00:00 — Understanding Huntington’s Disease
A clear, human explanation of what HD is and why lived experience is essential.

02:35 — A family secret revealed
Erin shares the unexpected moment that changed the course of her life.

03:57 — Facing a life-altering diagnosis
How Erin processed the news and what the early emotional impact looked like.

08:28 — Becoming a caregiver
What it meant to step into supporting her father as HD progressed.

09:46 — Advocacy in the healthcare system
Erin reflects on what patients and families often need—but don’t always receive.

13:24 — Rebuilding after a difficult season
The small, intentional practices that helped her slowly find her way forward.

15:49 — Transforming pain into purpose
How writing, publishing, and community shifted Erin’s path.

28:34 — Connection beyond words
A beautiful insight into staying close to a loved one when communication changes.

In this conversation, Ursula and Anne Marie sit down with Mark Stolow, Founding Director of People Before Patients, to explore what it truly means to humanize healthcare.

Drawing from early caregiving experiences and over two decades in public health, Mark challenges the industrial logic shaping today’s system and offers new metaphors—like forests, ecologies, and “the dome”—to help us reimagine care in a more relational, alive, and humane way.

He also introduces the practice of asking “more beautiful questions,” examines the difference between cold and warm data, and shares how slowing down might be the most urgent step toward redesigning healthcare for the future.

Why You Should Listen

• You’ll rethink the phrase “humanizing healthcare”—and why it reveals how far we’ve drifted from care’s original purpose.
• Mark offers powerful metaphors (forest ecology, The Truman Show dome, bonsai) that reframe how we understand illness, suffering, and systems.
• You’ll learn why data alone can’t capture a person’s lived experience, and why healthcare must balance cold metrics with warm context.
• This episode gives clinicians, patients, caregivers, and leaders a new lens for imagining what healthcare could become if we widen the frame.
• It invites us to ask better, more beautiful questions—the kind that open new pathways instead of repeating old answers.

Episode Highlights (Timestamps)

00:00 – Welcome to Amplify
Ursula, Brent, and Anne Marie introduce the episode and its focus on perspectives that can reshape healthcare’s future.

00:34 – Meet Mark Stolow
Mark is introduced as a thought explorer and founding director of People Before Patients, with more than 20 years in the human development and health space.

01:04 – Mark’s origin story
How caring for his mother during severe bipolar episodes shaped his lifelong interest in human suffering, psychology, and healing.

02:28 – Eastern philosophies and “the wisdom of anxiety”
Mark shares how Buddhist and Indian schools of thought influenced his academic and personal exploration of the mind.

04:00 – What does “humanizing healthcare” really mean?
Why the phrase surprises Mark, and what it reveals about how far we’ve drifted from a human-centered understanding of care.

05:45 – A family carrying the weight
Mark reflects on growing up in a household affected by mental illness and what he wishes the family had understood earlier.

07:54 – Healthcare professionals are longing for humanness too
The increasing dissatisfaction and yearning for meaning among clinicians.

08:56 – The forest metaphor: Healthcare as a living ecology
How interconnected systems like forests can teach us more about care than industrial models.

11:00 – What’s getting in the way? The limits of industrial thinking
Why healthcare’s “input-output” mindset fails to capture the complexity of human lives and chronic illness.

12:52 – Expanding the edges of illness
Cancer isn’t only what shows up on scans—Mark describes its ripple effects across relationships, identity, and daily life.

13:45 – Discreet solutions to complex problems
Why industrial solutions are often partial—and what’s missing.

14:38 – A better metaphor: ecological thinking
Shifting from centers and hierarchies to interdependence and mutuality.

16:00 – Ask a more beautiful question
What makes a question “beautiful,” why it requires patience, and how it helps us understand pro