Episode Summary

In this powerful episode of Amplify, hosts Ursula Mann and Christina Pisapia speak with Erin Patterson, 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

A routine nudge from a family doctor changed everything. After being sent for a mammogram she had delayed, Share was diagnosed with stage 0, triple-negative breast cancer—caught extraordinarily early. In this candid conversation, she walks us through that phone call, the whirlwind of next steps, and the mindset and micro-supports that helped her stay grounded: humor, weekly friend check-ins, complementary therapies, and clear self-advocacy. We also talk about what truly helpful support sounds like, why routine screening matters (even without symptoms), and how this experience is shaping her life, work, and a new legacy-preserving project for families.

Why listen

• A real-world case of early detection saving options—and likely outcomes
• Practical scripts for self-advocacy when guidelines and funding create friction
• Compassionate guidance for friends & family: what to say, how to show up, and when to just listen
• An uplifting reminder that attitude and humor are legitimate forms of support

Key moments

• 00:01:02 — The curveball: A proactive GP flags an overdue mammogram; results move quickly to ultrasound and biopsy.
• 00:05:00 — “Triple-negative” at stage 0: Why speed mattered; a second tiny tumor was found by surgery day.
• 00:06:07 — The GP everyone deserves: Thorough history, time to listen, and even a hug.
• 00:11:00 — Two diagnoses in one day: Processing the news and choosing a forward plan.
• 00:12:00 — Building a circle of support fast: Reiki, self-hypnosis audio, nutrition plan, acupuncture & herbs.
• 00:13:05 — “Don’t should me”: Responding to others’ expectations about how to feel.
• 00:17:32 — Feeling seen: The power of two close friends and brave, non-invasive check-ins.
• 00:20:08 — Daily gratitude practice: Coffee, quiet, noticing small joys.
• 00:25:30 — Screening: No symptoms, no pain—still cancer. Don’t delay routine tests.
• 00:27:14 — Mindset matters: “Cancer loves despair.” Choose light, and ask for help if you can’t find it.
• 00:28:03 — Work & legacy: Launching Film & Life to preserve family memories.
• 00:30:14 — What she’s reading: Murder mysteries and JD Robb’s In Death series.
• 00:29:13 — Raiders fan for life: Loyalty, teamwork, and showing up to the end.

Resources & mentions

• Routine screening: talk to your GP about what’s recommended for your age & history and what’s available beyond funded programs.
• Books: JD Robb — In Death series (futuristic detective fiction).
• Share’s company: Film & Life
  — helping families preserve their stories through legacy videos and media digitization.

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