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Remission rates don’t rise by accident—they rise when people, data, and purpose align. This week we were joined by our friend Becky Johnson Rescola, Executive Director and President of ImprovedCareNow (ICN), to unpack how a learning health network is transforming pediatric IBD care through shared data, quality improvement, and genuine partnership with families.

We trace ICN’s journey from ten centers in 2007 to a 100+ site network with a registry tracking over 33,000 active kids and young adults. Becky explains how consistent measurement and coaching pushed remission from roughly 53% to about 84%, with growing emphasis on sustained and steroid‑free remission. You’ll hear a real-time example of change in motion: a shared decision-making tool piloted at eight centers to help families weigh adalimumab plus methotrexate, reflecting registry findings that combo therapy speeds remission with adalimumab but not infliximab. We also dig into how registry data supports off‑label insights, helps sponsors understand pediatric outcomes, and even flags potential trial participants through privacy‑preserving queries.

Beyond medications, we explore EMR integration with Epic to reduce data burden, targeted efforts to close gaps in race and ethnicity fields to spot disparities, and the network’s commitment to co‑producing resources with patients and parents. Becky brings the community to life through ICN’s conferences—scholarships, learning labs, and a welcoming vibe that empowers quieter voices to speak up and help set the agenda. From very early onset IBD and tailored transition to adult care, to smarter partnerships across GI and related conditions, the path forward is both practical and ambitious: make evidence usable, make participation easy, and make sure every child benefits whether or not they’re seen at an ICN center.

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Links

• ImproveCareNow's website
• ICN- Tools and resources for patients and parents

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A mouse who can’t eat cheese and an owl who loves her anyway—sometimes the simplest stories hold the biggest truths. We welcome author MB Mooney to share how The Mouse Who Couldn’t Eat Cheese grew from the life and legacy of Alex, a bright, owl‑loving kid who lived with Crohn’s disease and inspired a foundation, Beautiful Beyond the Pain. Instead of a medical explainer, MB wrote a friendship-first tale that helps children understand invisible illness, practice empathy, and see vulnerability as a path to connection.

We open up the creative process behind writing for kids and parents at once: crafting a title that hooks curiosity, choosing scenes that feel honest, and striking a tone that respects young readers without sanding down the hard parts. MB explains why children’s books are tougher than they look, how early readers—many without any IBD connection—found universal meaning in the story, and what it takes to put your heart on the page when criticism is part of the job. For aspiring authors in the chronic illness community, he shares a practical roadmap: draft freely, revise with audience in mind, find a writing group for accountability and critique, and build resilience for the inevitable one‑star review.

We also look ahead to future volumes featuring Alex the Owl, including a potential ADHD story drawn from MB’s family experience. Along the way we talk about making invisible illness visible, helping kids self‑advocate, and why every community benefits when friends learn to meet each other’s needs with flexibility and care. If you’re a parent, patient, educator, or creator looking for stories that heal and tools that help, this conversation is a warm, grounded guide.

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Links:

• MB Mooney's website
• The Mouse Who Couldn't Eat Cheese
• Camp Oasis- Crohn's & Colitis Foundation USA
• A longer interview with MB about his book- Adventures in the Heart of Children's Book Authors podcast

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What if the decision you feared most was the one that finally set you free? We sit with Gaylyn Henderson—writer, model, and founder of Gutless and Glamorous—to trace her path from a swift, severe Crohn’s diagnosis at fourteen to an ostomy that gave her health, energy, and a voice loud enough to change minds.

Gaylynn opens up about the early years when prednisone and 6MP were the only options and hospital stays collided with high school milestones. She explains how stigma around surgery—echoed by culture and sometimes even clinicians—kept her in pain despite worsening Crohn's with fistulas. The turning point came with a loop ileostomy and near-instant relief: weight returned, pain lifted, and daily life felt possible again. That contrast fuels her mission to push back on misinformation, normalize ostomies, and help others avoid years of needless suffering.

We explore how a personal blog became a movement. Gaylyn shares the moment she hit “send,” the flood of messages from people who finally felt seen, and how modeling with Aerie made ostomy visibility mainstream. Her nonprofit, Gutless and Glamorous, builds community through modern, welcoming spaces that don’t feel like traditional support groups, connecting patients who can check in when symptoms surge and silence sets in.

Mental health takes center stage as Gaylyn unpacks the myth of “I should be able to handle this,” and we discuss why therapy and tools like EMDR can help after the crisis has passed. Chronic illness can be isolating; community is part of care. Expect candid talk about advocacy, ostomy life, body image, and the courage to redefine normal on your own terms.

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Links:

• Gutless and Glamorous website
• Gaylyn on Instagram
• More of Gaylyn's story in Elle magazine
• Gaylyn in The Mighty

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