As a parent, advocate, and self-described IBD "researcher," Inbal has been on the front lines of her family’s IBD journey for a decade. But this isn't just one story, it’s two. Inbal's family has navigated two separate Crohn's disease diagnoses, years apart: one for her younger son in the pediatric system and one for her older son as a young adult. This gave her a unique, firsthand view of the striking differences between the two healthcare worlds. In this insightful Ignite Talk, Inbal shares her lived experience…the fear, the advocacy, the care, the community, the systems that worked, and the ones that failed, to show us the importance of sharing lived experiences and coming together. Her message is a vital one: the healthcare system must learn from families, not just about them, to bring this kind of supportive care to every IBD patient.

Be inspired by Inbal's #IgniteTalk 🔥

We are excited to be hosting our Fall 2025 Community Conference in Orlando, Florida from September 17 to September 19. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda to check out topics and sessions for this event ⬇⬇

When a child is diagnosed with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Disease (AILD), everyday life can feel completely upended. Doctor visits, flare-ups, and unexpected hospital stays often interrupt routines, making it hard to keep a sense of normal. But holding on to simple expectations, like going back to school after summer break or helping with chores at home, can give children the comfort of stability. Finding that balance between compassion and structure not only helps kids feel more grounded but also supports the well-being of the whole family.

Chapters 9 and 12 from the Caregiver Coping Resource highlight how maintaining routines and balance at home can support children, while also offering caregivers practical tools and strategies to navigate daily life with greater ease and confidence.

Caring for a child with Inflammatory Bowel Disease (IBD) or Autoimmune Liver Disease (AILD) can be demanding, and caregivers often put their own needs last. Chapter 4 of the Caregiver Coping Resource reminds parents and caregivers that taking care of yourself is not a luxury—it’s a vital part of caring for your family. Coping with stress and emotions is a skill that takes time and practice. Through personal stories and expert insights, this chapter offers encouragement and practical strategies to help you rest, seek support, and strengthen your emotional well-being.

We know all caregivers can experience big feelings when their children are diagnosed with a chronic illness and face complex and ongoing medical needs. As part of coproducing the comprehensive Caregiver Coping Resource, the resource team reached out to caregivers who identified as dads for their insights into caring for a child with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Disease (AILD). In honor of Men's Mental Health Awareness Month, we are highlighting some of those insights - from Chapter 5 of the Caregiver Coping Resource. 

The summer of my son’s diagnosis was one our family will never forget. While backpacking in California, my then 16-year-old son developed severe, life-threatening diarrhea. This would ultimately lead to a diagnosis of Inflammatory Bowel Disease (IBD) and within 18 months my son would have a total colectomy. We ended up at an ImproveCareNow care center - Children’s Healthcare of Atlanta/GI Care for Kids – and the rest is history as they say. Except that “history” has been long, overwhelming, saddening, frustrating, hopeful, and inspiring, full of questions.

Looking back over the journal I kept during my son’s diagnosis, I am reminded of what was missing - information for the caregiver.

When I was diagnosed with Crohn’s disease at 12 years old, I was inundated with thoughts and feelings about my new diagnosis – what did it mean, why did I need to take medicine, what did a chronic illness mean for my future, how was I going to learn to swallow pills? I was – understandably and developmentally-appropriately – focused on my own coping with a new illness as a young person. I remember feeling frustrated and impatient with my very supportive parents when they prompted me to take my new medication; I cried and was obstinate often in those early weeks and months, with my parents’ support unwavering and steadfast. My mom was my advocate and champion, she always made sure my voice was heard during medical visits. My dad helped me to feel less alone, including a sincere offer to also have an NG (nasogastric) tube placed when we considered enteral therapy.

Nutritional Therapy for IBD - an ICN partner organization dedicated to advancing evidence-based nutrition as part of IBD treatment plans to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis, recently launched an IBD Nutrition Navigator^™ 

ImproveCareNow (ICN) believes that when patients and parents/caregivers are true partners in the design and delivery of IBD care, we can achieve even better outcomes. One way our Learning Health Network fosters this partnership with our pediatric IBD families is through a Community Conference scholarship program. Scholarships cover the full costs for patients and parents/caregivers to attend our in-person meetings. 

Medical conferences have traditionally been designed just for medical professionals. Shifting this paradigm - offering enriching, content-focused meetings that engage and meet the needs of a diverse audience - is both a challenge and an opportunity. In ICN we are committed to continuously improving our conferences to better include all members of our community. Patients and parents/caregivers not only attend as full participants in our conferences, many of our sessions are also co-created and presented by these vital partners. 

Below are some reflections shared by patient & parent/caregiver attendees from our Fall 2024 Community Conference. If you would like to support this important work and bring more IBD family voices to our learning events, please make a donation to the Richard B. Colletti Family Fund.

This is Tori's story about her son's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) diagnosis at just two years old. It's a story of misdiagnoses, frustrating dismissals, and the eventual discovery of a chronic condition that affects a growing number of very young children. More importantly, it's a story of resilience, hope, and the power of community. Enjoy Tori's powerful #IgniteTalk as she recalls the challenges and triumphs of raising a child with VEO-IBD and discovers how this journey has transformed her family and inspired them to advocate for others.

Be inspired by Tori's #IgniteTalk 🔥