Healthy nutrition is more than what’s on our plates, it’s often a lifeline, a form of empowerment, and a source of hope for families navigating chronic health conditions.

My name is Leah, and I am a parent on the ImproveCareNow Parent/Family Advisory Council (PFAC) with two children diagnosed with Crohn’s disease. In 2016, our world turned upside down when both our children were diagnosed with IBD. We were nervous, scared, and overwhelmed facing not one but two Crohn’s diagnoses. Our wonderful GI, Dr. Suskind, discussed various treatment options, one of which included a dietary therapy approach that he had been newly researching called the Specific Carbohydrate Diet (SCD). I went home from the hospital armed with food lists and determination and got started right away on a new way of cooking.

On Rhys' very first day home from the hospital, his Mom and Dad knew something wasn't right. This is Rhys' story in his Mom, Colby's words.

Parenting a child with a chronic illness like Inflammatory Bowel Disease (IBD) can feel isolating for both the child and the caregiver. While the love and support of family and friends are vital, connecting with others who truly "get it" offers a unique and powerful kind of support: peer support. The Caregiver Coping Resource emphasizes the immense value of supportive connections for both children and their families.

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.