Medical Advisory Board

Miriam Bornhorst, MD 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. 

Emily is a Pediatric Nurse Practitioner at Children’s Wisconsin, where she specializes in the care of patients with Neurofibromatosis Type 1 and other RASopathy disorders. In her role, she works closely with patients and their families to provide comprehensive, coordinated care tailored to the unique needs of children with complex genetic conditions. Emily places a strong value on the continuity of care that comes from supporting patients with Neurofibromatosis Type 1 from initial diagnosis through childhood and into early adulthood. She believes that building long-term, trusting relationships with patients and families is essential to achieving positive health outcomes and empowering families to actively participate in care decisions. With a longstanding passion for pediatric healthcare, Emily is deeply committed to providing compassionate, evidence-based, and family-centered care. She strives to ease fear and anxiety related to medical visits and hospitalization by creating a supportive and reassuring environment for both patients and caregivers. Through patient education, advocacy, and collaboration with multidisciplinary teams, Emily is dedicated to improving quality of life and long-term outcomes for children living with complex medical conditions.

Shawn Damodharan, DO is the director of pediatric neuro-oncology at UChicago Medicine/Chicagoland Children’s Health Alliance specializing in brain tumors and neurocutaneous disorders, including neurofibromatosis (NF1 and NF2-related schwannomatosis). His interest in NF began during pediatric residency and has remained a central focus throughout his training and career, ultimately shaping his path into neuro-oncology. He is drawn to the multidisciplinary, longitudinal care of this unique patient population, ongoing advances in surveillance and treatment, and the lasting relationships formed with patients and families.

Cristin is a genetic counselor in the Genetics and Genomics Department at Children’s Wisconsin/Medical College of Wisconsin and has worked in the Neurofibromatosis and RASopathy Clinic there since 2014. She has developed a strong interest in neurofibromatosis and related conditions and is dedicated to empowering families through education and support.

Dr. Klein-Tasman is a Professor in the Department of Psychological and Brain Sciences at the University of Wisconsin-Milwaukee and directs the Child Neurodevelopment Research Lab. Bonnie earned her doctorate in Clinical Psychology and Cognition & Development from Emory University and completed clinical internship and post-doctoral fellowship at the University of Chicago Medical Center. Together with graduate students and undergraduate research assistants, she conducts research about the development of children with specific neurogenetic conditions, including neurofibromatosis type 1. She has conducted research about the cognitive, social, and motor development of children with NF1 from the preschool years through early adolescence, neural underpinnings of attention in NF1, and about the impact of the PEERS Telehealth intervention to support social functioning in teens with NF1.  Her work with children with NF1 has been generously funded by NF Midwest, NF Northeast, NF MidAtlantic, University of Chicago CTSI, and the Children’s Tumor Foundation. Dr. Klein-Tasman is pleased to bring her clinical and research-related expertise to the board.

Nikolas Mata-Machado, MD, MHA, serves as Chief of Pediatric Neurology at the University of Illinois Chicago in Chicago. He is a pediatric neurologist with more than 15 years of experience caring for patients with Neurofibromatosis and related neurocutaneous disorders.

Dr. Mata-Machado holds multiple board certifications, including pediatric neurology, epilepsy, neuroimaging, and headache medicine. His clinical and academic work focuses on autism and neurodevelopmental disabilities in children with Neurofibromatosis Type 1, with an emphasis on comprehensive, patient-centered care.

In his clinical practice, he manages children with Neurofibromatosis and its complex manifestations through a holistic approach that integrates neurological, developmental, and psychosocial dimensions of care.