What changes when a patient advocate becomes the mother of a critically ill child? Julie Croner joins Ursula Mann and co-host Anne-Marie Hayes to share her experiences with psoriatic arthritis, avascular necrosis, complex regional pain syndrome, and melanoma—and how her youngest daughter’s six-month hospitalization gave her a different understanding of caregiving.

Julie reflects on the patient communities that helped her find a path forward, the emotional impact of illness on the whole family, and her work at Health Union helping others turn lived experience into meaningful advocacy.

Highlights With Timestamps

• 00:33 — Meet Julie Croner: Patient leader, mother of four, and the “complex medical mama.”
• 04:40 — Childhood symptoms and the search for answers: Repeated knee surgeries and the difficulty of accepting psoriatic arthritis at a young age.
• 07:19 — Facing avascular necrosis: A devastating diagnosis and uncertainty about her mobility and future.
• 08:43 — Finding the patient community: How online connections offered support and helped Julie discover information about treatment options.
• 11:57 — Becoming an active partner in care: Tracking symptoms, identifying patterns, and sharing her findings with doctors.
• 12:56 — The mental health impact of chronic illness: Depression, panic attacks, and asking for professional support.
• 14:45 — Melanoma and rediscovering herself: An early skin cancer diagnosis, an unexpected singing performance, and the beginnings of her blog.
• 18:30 — Becoming a complex medical mama: Pregnancy uncertainty and her youngest daughter’s early feeding difficulties.
• 21:19 — A medical emergency at five weeks old: Influenza B, pneumonia, and complications that led to two months on a ventilator and six months in hospital.
• 23:34 — Illness affects the whole family: A new understanding of her parents’ caregiving experience and supporting Ellie’s siblings through trauma.
• 25:46 — “It’s just a bad day, not a bad life”: Finding moments of hope during difficult seasons.
• 26:45 — Turning lived experience into a career: Julie’s transition from IT consulting to patient community leadership.
• 29:05 — Recognizing the value of patient expertise: Fair compensation, collective knowledge, and why advocates should not undervalue their contributions.
• 30:28 — Building confidence as a patient leader: A certification resource for responsible storytelling and advocacy.
• 32:21 — Finding joy in family life: Togetherness, new experiences, and a shared love of Disney.

Links and Resources

• Julie’s blog: It’s Just a Bad Day, Not a Bad Life — Her personal story and advocacy journey. itsjustabadday.com
• Social Health Network — A community for patients, caregivers, and healthcare professionals. socialhealthnetwork.com
• Patient Leader Certification Program — Free training to strengthen storytelling, credibility, and advocacy skills. socialhealthnetwork.com
• Patient Voice Partners — Learn more about Amplify and opportunities to share your patient or caregiver experience.

Disclaimer:

The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates.

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 does it take to turn lived experience into lasting change for patients? Gail Attara joins Ursula Mann and Anne-Marie Hayes to share how growing up with a mother living with Crohn’s disease shaped her commitment to advocacy. Together, they explore the impact of inflammatory bowel disease beyond the gut, the importance of medication coverage, and the work behind patient organizations. Gail also offers candid insights into funding, accountability, and what meaningful collaboration requires to build better, more individualized care.

Episode Highlights

• 02:25 — Why healthcare cannot be one size fits all: Gail’s red-stiletto analogy illustrates why policies must reflect different patient needs.
• 03:22 — Three decades of advocacy: Gail introduces the two organizations she leads and explains the origins of the Gastrointestinal Society.
• 04:19 — When lived experience becomes a calling: Her mother’s experience with Crohn’s disease—and the blame she faced—helped shape Gail’s advocacy.
• 08:01 — New hope in IBD treatment: Moving beyond symptom management toward therapies that can change the course of disease.
• 09:00 — Trusted education and medical collaboration: How gastroenterologists help review patient resources and support advocacy.
• 10:20 — IBD beyond the gut: Exploring mental health, the gut–brain connection, and the broader burden of chronic illness.
• 11:48 — Medication approval versus coverage: Why an available treatment may still be out of reach for the person who needs it.
• 12:18 — Why patient organizations matter: Helping people navigate healthcare, access reliable information, and evaluate an organization’s credibility.
• 19:11 — Ethics and independence: Gail discusses fundraising boundaries and her organizations’ approach to product endorsements.
• 22:53 — Making patient voices part of drug reviews: Gail reflects on advocating for patient-group submissions to the Common Drug Review.
• 25:41 — Care that recognizes individual needs: Why treatment coverage must account for differences between patients.
• 28:05 — Behind the scenes of collaboration: Funding pressures, unequal workloads, and fair compensation.
• 31:09 — Supporting patients in everyday life: Employer education and free resources bring digestive-health information into workplaces and communities.
• 36:57 — Advocacy in action: Helping connect a patient needing an intestinal transplant with political support.
• 39:47 — What authentic collaboration requires: Respect, addressing harmful behaviour, and returning to a shared mission.

Links and Resources

• Connect with Gail Attara on LinkedIn
• Gastrointestinal Society and Canadian Society of Intestinal Research
• GI Society Programs and Services
• Patient Voice Partners — Learn More or Join Patient Voice Connect

About Gail Attara

Gail Attara is Chief Executive Officer and Co-Founder of the Gastrointestinal Society and President of the Canadian Society of Intestinal Research. With three decades of leadership in patient advocacy, she champions trusted digestive-health education, patient involvement in healthcare decisions, and better access to appropriate treatment. Her family’s experience with chronic illness helped shape her commitment to keeping patients at the centre of care.

Disclaimer:

The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates.

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.