2025 iNFo Fair

Dr. Damodharan is the Director of Pediatric Neuro-Oncology at the University of Chicago and the Chicagoland Children’s Health Alliance—a partnership between Advocate Children’s Hospitals, Endeavor Health System, and the University of Chicago. He provides specialized clinical care for children and young adults with brain tumors, neurofibromatosis type 1 (NF1), and NF2-related schwannomatosis.

His research focuses on advancing the understanding and development of novel therapeutic strategies for pediatric brain tumors. In addition, he is committed to exploring the epidemiology and long-term outcomes of patients with NF1 and NF2-related schwannomatosis, with the goal of improving both treatment options and quality of life.

Dr. Nicholas Pytel is an assistant professor in the Division of Hematology, Oncology, Transplant, and Cellular Therapy at the University of Wisconsin School of Medicine and Public Health. He co-directs the Pediatric Brain Tumor Program at UW Health and is the medical director of the Pediatric Neuro-Oncology and Pediatric Neurocutaneous Disorders multidisciplinary clinics at UW Health. He also heads the Pediatric Molecular Targeted Radiotherapy Program at UW Health. He is the institutional responsible investigator of neuroscience for UW Carbone Cancer Center in the Children’s Oncology Group. He is involved in the Society of Neuro-Oncology, the International Symposium on Pediatric Neurology-Oncology, and the American Society of Pediatric Hematology/Oncology. He has attended and presented research at these conferences. His research interests involve pediatric central nervous system tumors, targeted therapy, and issues affecting those patients.

Joe Booe serves as a Patient Education Manager (PEM) at Alexion, supporting individuals and families affected by Neurofibromatosis Type 1 with Plexiform Neurofibromas (NF1 PN). In this role, he provides education, resources, and local community connections to help patients better understand and manage their condition.

Joe is passionate about his work, sharing: “Patients living with rare diseases face many challenges that impact their daily lives. I’m inspired by their stories and welcome the opportunity to provide educational resources to help patients effectively manage their condition.”

Through Alexion’s OneSource™ program, Joe connects patients with information about their disease, guidance on treatment, opportunities to engage with others in the rare disease community, and events that provide education and support

Dr. Bornhorst is a pediatric neuro-oncologist at Lurie Children’s Hospital (LCH), principal investigator in the Stanley Manne Children’s Research Institute, Max Lacewell Endowed Brain Tumor Research Scholar, and an Associate Professor in Pediatrics at Northwestern University, Chicago, IL. Her research interest and experience are in the discovery of tumor biomarkers that predict tumor behavior, including response to treatment. She has an active, funded research project looking at baseline metabolism in NF1, and how to leverage changes in metabolism to prevent/treat plexiform neurofibromas. She also has an active project researching SV patterns within tumors associated with risk for progression/decreased treatment response. In her role as a neuro-oncologist, she has extensive experience with the clinical care of children with brain tumors, Neurofibromatosis Type 1, and Cancer Predisposition, including clinical trial development and execution.  

Dr. Jordan is Associate Professor of Neurology with a secondary appointment in the Peter O’Donnell Jr. Brain Institute at the University of Texas Southwestern Medical Center in Dallas, Texas. He serves as Head of the Neuro-Oncology Section, where he also runs a comprehensive clinic for adult patients affected by NF1 and schwannomatosis. Dr. Jordan also has a long history of leading research efforts related to NF1 and schwannomatosis, including work on interventional clinical trials for cutaneous neurofibromas, plexiform neurofibromas, and gliomas in NF1, all tumor types in NF2-related schwannomatosis, and chronic pain in non-NF2-related schwannomatosis. He has collaborated or led research investigations on novel imaging techniques including longitudinal whole body MRI scans, radiomics, and high-frequency ultrasound to advance our understanding of tumor behavior over time. Finally, Dr. Jordan has a strong interest in improving quality of care for patients affected by NF1 and schwannomatosis; he has published on both physician and patient-reported care patterns as they relate to published care recommendations, and is engaged in collaborative work at multiple levels to improve care for all. He serves as chair of the Scientific Advisory Committee for Neurofibromatosis Network, and is a member of the Clinical Care Advisory Board within the Children’s Tumor Foundation.

Robert Listernick, MD is a General Academic Pediatrician in the Division of Advanced General Pediatrics and Primary Care. He is a Professor at Northwestern University Feinberg School of Medicine in the Department of Pediatrics. He is director of the Diagnostic and Consultation Service and Co-Director of the Neurofibromatosis Clinic which he cofounded in 1985. He obtained his BA in Biology and English from the University of Rochester and his medical degree from University of Pennsylvania School of Medicine. He performed his residency at The Children’s Memorial Hospital and has been on staff since 1982.His research has focused primarily on optic pathway tumors in children with NF-1.

Jon Mietchen is a pediatric neuropsychologist and an assistant professor in the Department of Neurology at the University of Wisconsin School of Medicine and Public Health.

He completed his PhD in Neuropsychology at Brigham Young University. He completed his residency at the University of Kansas School of Medicine and he completed his fellowship at the University of Wisconsin School of Medicine and Public Health.

Jon specializes in cognitive and neuropsychological evaluations for children and adolescents with medical disorders, including NF. These assessments look for strengths and challenges a child may have in memory, attention, executive function skills, and learning.

He has presented research related to neuropsychological screening and NF1 at the Children’s Tumor Foundation and the Society for Neuro-oncology.

Jordyn Prell joined the Medical College of Wisconsin in June 2020. She obtained her Master of Science degree in Genetic Counseling in May 2020 at Virginia Commonwealth University. She is a board-certified genetic counselor through the American Board of Genetic Counseling. As a pediatric genetic counselor, Jordyn’s clinical focus is serving patients and their families through our Neurofibromatosis/RASopathies Clinic as well as Children Wisconsin’s Multidisciplinary Cleft Lip and Palate team. As an educator, Jordyn strives to create a welcoming and interactive learning environment that allows students to develop personal and professional skills that are necessary to thrive in the field of genetic counseling.