BARE 'On the Road' brings hope and healing to Children’s Mercy
On Oct. 18, Children’s Mercy proudly hosted BARE (Biliary Atresia Research and Education) “On the Road,” a powerful half-day event dedicated to supporting families, patients, caregivers and medical professionals affected by biliary atresia (BA)—a rare and serious pediatric liver disease.
This event was part of BARE’s national initiative to bring education, resources and community-building directly to leading pediatric institutions. In collaboration with BARE, Children’s Mercy’s Child Life team and liver nurses created a joyful “kids camp” for patients and siblings, ensuring a welcoming and supportive environment for all attendees.
The day brought together a diverse and passionate group of participants. BARE, a national nonprofit founded by parents of children with BA, led the charge in driving research and education. Medical experts from across disciplines, including hepatology, surgery, psychology, nutrition, and transplant care, shared their insights. Among them was Jonathan Merola, MD, from Cincinnati Children’s, who presented “Frontiers in Pediatric Liver Transplantation.” Families living with BA and those who have undergone liver transplants came together with their caregivers to share experiences and build community. Advocates like Lauren Wilmer from COTA (Children's Organ Transplant Association) and Chloe Simmons from Make-A-Wish Missouri and Kansas offered valuable resources and support.
The event’s impact was felt deeply. Families gained practical knowledge on diagnosis, treatment, mental health and life post-transplant through expert-led talks and breakout sessions. Connections formed among attendees who understood the unique challenges of the BA journey, fostering emotional support and solidarity. Open dialogue between clinicians and families helped shape future care models and research priorities. By visiting individual centers like Children’s Mercy, BARE ensured its resources reached diverse communities. All BA families were invited free of charge, including those receiving care outside of Children’s Mercy.
For Children’s Mercy, hosting BARE “On the Road” was a meaningful affirmation of its leadership in pediatric liver care, while highlighting the hospital’s commitment to holistic support—clinical, emotional, and educational—for families navigating chronic illness.
BARE “On the Road” was more than an event, it was a celebration of resilience, knowledge, and community. By bringing together experts, advocates, and families, it created a space where healing and hope could thrive.