Sponsored by
presented by
FEATURED SPEAKERS
Amy Armstrong, MD
Assistant Professor of Pediatrics, Division of Hematology/Oncology
Washington University, St. Louis
Dr. Armstrong grew up in St. Louis. She attended the University of North Carolina Chapel Hill and then worked in clinical research at Brigham and Women’s Hospital. She attended medical school at Virginia Commonwealth University and did her pediatric residency and a hematology/oncology fellowship at Northwestern/Lurie Children’s Hospital in Chicago. She became interested in solid tumors as an attending at IU/Riley Children’s Hospital. Working there with experts in neurofibromatosis preclinical research she became involved with the NF Clinical Trials Consortium, and was a co-PI for a clinical trial treating plexiform neurofibromas. Dr. Armstrong is now an assistant professor at Washington University in St. Louis working in the pediatric hem/onc division. She heads the solid tumor team, is part of the COG renal tumor committee, is site PI for the NF Clinical Trials Consortium, and has built a collaboration with the adult sarcoma team at Siteman Cancer Center for the treatment of adolescent and young adults with sarcomas as well as optimizing therapeutic approaches for NF1-associated tumors.
Donald Basel, MD
Geneticist and Co-Director of the Neurofibromatosis and RASopathy Clinic
Children's Hospital of Wisconsin in Milwaukee
Dr. Basel considers himself very fortunate to be able to do what he does. Not only does he get to work in a field that he is passionate about, but he is afforded the opportunity to meet people who have been searching for answers, which he can frequently provide, to help them understand why they have the health concerns that they do.
Miriam Bornhorst, MD
Neuro-Oncologist and Clinical Director, Gilbert Neurofibromatosis Institute
Children's National Hospital in Washington, DC
Dr. Bornhorst is a Neuro-Oncologist, the Clinical Director of the Gilbert Neurofibromatosis Institute at Children’s National Medical Center, Medical Director of the Cancer Genetics Program at Children’s National Hospital and an Assistant Professor in the George Washington University Department of Pediatrics. In the clinic, she primarily cares for patients with Neurofibromatosis or other predisposition to develop tumors/cancer. She is the institutional PI for many of the Mek-inhibitor and targeted treatment studies for patients with NF1 at Children’s National. Her initial laboratory research focused on the development of early intervention therapies for optic pathway gliomas in NF. She is now focusing on the identification of novel genomic and metabolomic biomarkers in patients with central and peripheral nervous system tumors, particularly in patients who have cancer predisposition syndromes and brain tumors.
Gary Brenner, MD, PhD
Director, Pain Medicine Fellowship, Massachusetts General Hospital
Associate Professor, Harvard Medical School
Gary J. Brenner currently sees patients at the Massachusetts General Hospital Pain Management Center where he is the Director of the Mass General Pain Medicine Fellowship. He is an Associate Professor in Anesthesia at Harvard Medical School. Dr. Brenner runs an NIH-funded lab focused on developing gene therapy for the often painful peripheral nervous system tumors associated with neurofibromatosis. He also conducts neuroscience research on the mechanism of action of opioids in the brain, and has authored more than 45 articles, reviews, chapters, and abstracts on gene therapy strategies for NF tumors, the pathophysiology of pain, basic pain mechanisms and immune function, and clinical approaches to chronic pain. Dr. Brenner currently has several national leadership positions related to pain medicine education/training.
Virginia L. Harrod, MD, PhD
Co-Chief, Pediatric Neuro-Oncology
Dell Children's Medical Center
Dr. Harrod is Co-Chief of Pediatric Neuro-Oncology, Dell Children’s Medical Center. She is actively involved with the Children's Oncology Group in the Neuro-Oncology division, and participates in research studies for patients at Dell Children's Medical Center. Dr. Harrod lives in Central Austin with her husband and two children. She enjoys hiking and running in the greenbelt.
Justin Jordan, MD, MPH, FAAN
Clinical Director, Pappas Center for Neuro-Oncology
Director, Family Center for Neurofibromatosis, Mass General Hospital
Dr. Jordan is an assistant professor of neurology at Harvard Medical School and serves as the Director of the Family Center for Neurofibromatosis and as the Clinical Director for Neuro-Oncology at Massachusetts General Hospital. In addition to his clinical work, Dr. Jordan is involved in both translational and clinical research, including serving as site PI for the national Neurofibromatosis Clinical Trials Consortium. He is a leader in multiple national organizations, currently serving as a member of the Children’s Tumor Foundation Clinical Care Advisory Committee, vice chair of the Health Policy Subcommittee of American Academy of Neurology (AAN), member of the guidelines committee of the Society for Neuro-Oncology, and several other roles.
AeRang Kim, MD, PhD
Center for Cancer and Blood Disorders
Children's National Hospital, Washington, D.C.
The George Washington School of Medicine
Dr. Kim is an Associate Professor of Pediatrics and Director of Clinical Research in the Division of Oncology at Children’s National Hospital in Washington, DC. Her research has focused on the development of novel therapeutics for pediatric solid tumors, sarcomas, and neurofibromatosis type-1 (NF1) associated tumors, in particular malignant peripheral nerve sheath tumors (MPNST). She serves as the MPNST disease committee chair for the Department of Defense NF Clinical Trials Consortium. Along with collaborators and funding support from the NIH and Department of Defense, she has been able to develop and lead early phase trials of novel combination therapeutics for MPNST.
Lu Q. Le, MD, PhD
Simmons Comprehensive Cancer Center
Hamon Center for Regenerative Science and Medicine
University of Texas Southwestern Medical Center
Dr. Le received his Ph.D. in Immunology and Molecular Genetics, and a medical degree (M.D.) from the Medical Scientist Training Program at the University of California, Los Angeles (UCLA). He completed an Internship in Internal Medicine at UCLA/St. Mary Medical Center, residency training in Dermatology and a postdoctoral fellowship in Cancer Biology from University of Texas Southwestern Medical Center. He is board certified by the American Board of Dermatology. Dr. Le sees patients in the Dermatology clinic and at the UTSW Neurofibromatosis clinic.
John Mekalanos, PhD
Professor of the Department of Microbiology and Immunobiology
Harvard Medical School
John Mekalanos is the Adele Lehman Professor of the Department of Microbiology and Immunobiology at Harvard Medical School. He has been a member of the FDA Advisory Committee on Vaccines and Related Biologics and has consulted for numerous governmental and private agencies including the National Institutes of Health, the World Health Organization, The International Vaccine Institute, the National Academy of Sciences, Massachusetts Public Health Biological Laboratories, and the U.S.-Japan Cooperative Medical Science Program. His laboratory has provided many genetic tools that have been successfully used in the field for decades, establishing fundamentally new approaches to understanding bacterial virulence from the gene to the genomic levels.
Manikum Moodley, MD, FRCP
Pediatric Neurologist
UT Health Austin Pediatric Neurosciences at Dell Children’s
Manikum Moodley, MD, FRCP, is a professor in the Department of Neurology and a pediatric neurologist at UT Health Austin Pediatric Neurosciences at Dell Children’s. He specializes in pediatric multiple sclerosis and neuro-immunological diseases, neurofibromatosis, autonomic disorders and neonatal neurology.
Gillian Payne
Leadership Advocacy Coordinator
The Littlest Tumor Foundation
Gillian loves being able to advocate alongside other young adults for NF medical research through the NFYA Leadership Program. She graduated from the University of Wisconsin-Milwaukee with a Bachelor of Arts in Economics and Political Science in May of 2020. Before her position as Leadership Advocacy Coordinator, Gillian worked as an organizer in Milwaukee, WI. She is passionate about those with NF being able to advocate on behalf of themselves and hopes to help build a future where everyone with NF has access to adequate treatments and care. If you would like to learn more about how to advocate for the NF community, please contact info@littlesttumor.org
Anna F. Piotrowski, MD
Neuro-oncologist and Director of
The Neurofibromatosis Center at Memorial Sloan Kettering Cancer Center
Anna F. Piotrowski, MD is a neuro-oncologist and Director of the Neurofibromatosis Center at Memorial Sloan Kettering Cancer Center (MSKCC) in NY and NJ. Dr. Piotrowski cares for patients with primary brain tumors and conducts translational research in NF1 associated gliomas. She is interested in developing novel therapeutics.
Dr. Piotrowski completed a residency in Neurology at Stony Brook University Medical Center and a fellowship in Neuro-Oncology at Johns Hopkins University. She serves as the MSKCC site director for the Weill Cornell Neurology clerkship.
Steven Rhodes, MD, PhD
Assistant Professor, Department of Pediatrics
Division of Pediatric Hematology-Oncology
Indiana University School of Medicine, Riley Hospital for Children
Dr. Steven Rhodes is an Assistant Professor of Pediatrics at the Indiana University School of Medicine and Riley Hospital for Children. His research focuses on using preclinical disease models to study the biology of NF1-associated neurofibromas and malignant peripheral nerve sheath tumors (MPNST), with the goal of developing new therapeutics to treat and ultimately prevent precancerous neurofibromas from undergoing malignant transformation. Dr. Rhodes’s research is supported by the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research funded by the Neurofibromatosis Therapeutic Acceleration Program (NTAP). As a pediatric oncologist, he devotes his clinical practice to caring for children with NF-associated tumors through the Neurofibromatosis Multidisciplinary Clinic at Indiana University School of Medicine.
Carlos Romo, MD
Assistant Professor of Neurology, Oncology and Medicine
Director of Clinical Research, Neurofibromatosis Therapeutic Acceleration Program
Johns Hopkins University School of Medicine
Dr. Romo specializes in the diagnosis and treatment of people with neurofibromatosis, schwannomatosis, and brain tumors. Dr. Romo earned his medical degree from the School of Medicine and Health Sciences at Tecnológico de Monterrey in Mexico and completed his Neurology residency at the University of Arkansas for Medical Sciences, where he served as chief resident. He then completed a Neuro-oncology clinical and research fellowship in a joint program between The Johns Hopkins University and the National Institutes of Health. Dr. Romo additionally trained as a clinical pharmacology fellow at The Johns Hopkins University and completed training on clinical cancer research at the University of Texas MD Anderson Cancer Center. In his research, Dr. Romo studies the natural history and treatments for people with neurofibromatosis. He also studies drug pharmacokinetics and the blood-brain barrier, and investigates better ways to reach tumors in the central nervous system. In addition to patient care and research, Dr. Romo teaches and mentors medical and undergraduate students to help develop a future generation of neurologists.
Bonnie Klein-Tasman, PhD
Director, Child Neurodevelopment Research Lab
Professor, University of Wisconsin-Milwaukee
Dr. Bonnie Klein-Tasman is a Professor in the Department of Psychology at the University of Wisconsin- Milwaukee. She completed a Ph.D. in Psychology at Emory University in the areas of Clinical Psychology and Cognition & Development, as well as internship and post-doctoral training at University of Chicago Medicine. Dr. Klein-Tasman conducts research on the cognitive and psychosocial functioning of children with genetically-based neurodevelopmental disorders including NF1. She uses developmental neuropsychological approaches to study cognitive, social, attention, adaptive, and academic functioning and development beginning in the preschool years, with an eye to identification of the measures most likely to be appropriate for use with children with NF1. She and her students also conduct research about the effectiveness of telehealth intervention for improving social skills and peer relationships of teens with NF1. Her research has been funded by NF Midwest, NF Northeast, NF MidAtlantic, and the Children’s Tumor Foundation.
Brad Welling, MD, PhD, FACS
Massachusetts Eye and Ear
Physician and Surgeon
Harvard Medical School
Dr. Bradley Welling is a neurotologic surgeon whose clinical interests involve caring for patients with diseases of the ear and lateral cranial base. More specifically, he focuses on hearing loss, cochlear implants, auditory brainstem implants, as well as facial paralysis and deafness related to Neurofibromatosis type 2 (NF2)-associated tumors.