About CPRP

Melissa Kochanowsky is Associate Director of Programs at PFIC Network, a nonprofit supporting patients and families affected by progressive familial intrahepatic cholestasis (PFIC). She leads programs spanning disease education, advocacy, and research, and serves as Principal Investigator of the PFIC Network Patient Registry. She is Co-Lead of two successive PCORI-funded projects building capacity for patient-centered comparative clinical effectiveness research on PFIC, including the current launch of a multi-stakeholder PFIC research consortium.

Gitta Lubke is a Professor Emerita of Quantitative Psychology at the University of Notre Dame. During her academic career she focused on the development of statistical models for complex data and their applications in psychiatric genetics. Since 2019 she has been a contractor for PFIC Network where she contributes to grant writing, research projects, and the PFIC Network Patient Registry.

Marianne Kingsley is a parent of a teen with PFIC type 1. Her difficult experiences since diagnosis at 3 months old have led her to this project to help other patients and families have better information and support. Professionally, she has been with a Canadian municipal government for over 20 years, specializing in environmental policy research, analysis, development and implementation supported by an M.Sc. in Ecology.

Dr. Squires earned his medical degree from the University of Texas and went on to complete his training in general pediatrics at the Cincinnati Children’s Hospital Medical Center (CCHMC). Following residency, he completed fellowships in both pediatric gastroenterology and pediatric advanced/transplant hepatology at CCHMC and completed a Masters in clinical and translational research at the University of Cincinnati. Following completion of his training, Dr. Squires joined the faculty at the Children’s Hospital of Pittsburgh in 2015 where he is currently an associate professor in pediatrics, the director of the pediatric advanced/transplant hepatology fellowship, and associate medical director of Hepatology.

Emily Ventura co-founded PFIC Network with 2 other PFIC moms in 2018 and has served as Executive Director since 2021. She combines over a decade of critical care nursing experience with 14 years as a PFIC caregiver and advocate. Under her leadership, PFIC Network was funded in the second grant cycle of the Chan Zuckerberg Initiative’s Rare As One program. PFIC Network’s mission is to improve the lives of patients and families affected by PFIC worldwide.

Emily Perito is a pediatric hepatologist at University of California San Francisco and medical director of UCSF’s Pediatric Liver Center. Her clinical expertise is in pediatric liver disease and liver transplant. Her research focuses on long-term outcomes after liver transplant and patient-centered outcomes research. As a Co-Chair of the Starzl Network for Excellence in Pediatric Transplantation, a learning health network dedicated to pediatric liver transplant, she helps lead efforts in developing evidence-based best practices for immunosuppression and engagement of adolescents and young adults in transplant research and advocacy.