2024 iNFo Fair

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.  

Vanessa L. Merker, PhD, is a health services researcher at Massachusetts General Hospital and an Assistant Professor in Neurology at Harvard Medical School. Her research program leverages information collected directly from patients and their family members to improve clinical trial design and healthcare delivery for rare, genetic diseases like neurofibromatosis and schwannomatosis. She seeks to highlight patients’ priorities and tailor clinical interventions to match their preferences by using research methods such as in-depth qualitative interviews and patient-reported outcome measures.

Dr. Merker is also committed to partnering with NF families to help design and disseminate research. As Chair of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REINS) International Collaboration Patient Representative working group, she helps enable NF patients/caregivers to give feedback on the design of new research studies.

Dr. Gross is a pediatric oncologist and researcher at the National Institutes of Health National Cancer Institute (NIH/NCI). She is a prominent researcher and clinician with a focus on neurofibromatosis type 1 (NF1). Her areas of interest include developing and utilizing functional outcome measures for tumor predisposition syndromes, working with rare disease patient advocates to increase patient engagement in clinical trial design, and dealing with the challenge of medication adherence in the NF1 population.

Dr. Karajannis has been serving as Chief of the Pediatric Neuro-Oncology Service at Memorial Sloan Kettering Cancer Center since 2017 and is a Professor of Pediatrics at Weill-Cornell Medical College. Previously, he directed the Pediatric Hematology/Oncology Fellowship Training Program at NYU Langone Medical Center. He received his MD from the Free University Berlin, Germany, completed residency training at Duke University Medical Center, and fellowships in pediatric hematology/oncology, as well as pediatric neuro-oncology, at Memorial Sloan-Kettering Cancer Center. His clinical and translational research aims at developing novel diagnostic tools and therapies for patients with nervous system tumors. Dr. Karajannis currently serves as Study Chair on clinical trials conducted by the Pedatric Brain Tumor Consortium, the NF Clinical Trials Consortium and the Children’s Oncology Group.

Sarah Lees is Director of Research Education and Engagement at the Children’s Tumor Foundation (CTF).

Miranda McManus, MS, a parent to a son with NF1, her inspiration and hero. Miranda is also part of the Biology faculty at the College of Charleston, in Charleston, SC, and has a background in molecular genetics. She is a member of the REiNS Gene Therapy working group and serves on the REiNS Director’s Council.

Dr. Prada finds it an honor to work with children, adults, and families with genetic diseases. His clinical work focuses on improving health for individuals with rare diseases by developing individualized and integrated care across specialties to promote their well-being. For 6 years, he co-led the RASopathies program at Cincinnati Children’s Hospital to develop a care-based model on genetic pathways. He has conducted randomized clinical trials of lysosomal storage disorders, neurofibromatosis type 1, RASopathies, mTORopathies, and several natural history studies of genetic disorders in partnership with family groups and foundations.

Dr. Prada joined the faculty at Cincinnati Children’s Hospital Medical Center in 2013. He became director of the RASopathies Program in 2016 and director of the Neurofibromatosis Program in 2020 at Cincinnati Children’s Hospital. In 2021, Dr. Prada joined Lurie Children’s and the Feinberg School of Medicine at Northwestern University as the Division Head of Genetics, Genomics and Metabolism. 

Kavita Sarin, M.D./Ph.D., is an Associate Professor of Dermatology and is the Director of the Stanford Skin Cancer Genetics Program at the Stanford Cancer Institute. She has an academic interest in Precision Medicine, focused on the integration of genetic and clinical patient data to inform susceptibility, prognosis, and treatments in skin cancer and other rare dermatologic disorders. Her lab applies cutting-edge sequencing and imaging technologies to better understand skin cancer and rare immunologic skin diseases. She sees patients in medical dermatology at Portola Valley and the Stanford Cancer Institute.