Advisory Board and Council

Renee JG Arnold completed her undergraduate training at the University of Maryland, received her Doctor of Pharmacy degree from the University of Southern California, and completed a post-doctoral residency at University Hospital in San Diego and the University of California at San Francisco School of Pharmacy. She is President & CEO of Arnold Consultancy & Technology LLC in New York City and Practice Lead, HEOR at Quorum Consulting, Inc. in San Francisco, where she oversees outcomes research and develops software for pharmaceutical and federal government programs. Her academic titles include Adjunct Associate Professor in the Master of Public Health program at the Mount Sinai School of Medicine and Full Adjunct Professor at Long Island University College of Pharmacy and Health Sciences, and she is a founding member of ISPOR and author or co-author of numerous articles and book chapters in pharmacology, pharmacoeconomics, and cost containment strategies.

Dr. Robert Bell is Chief Scientific Officer at Ascidian Therapeutics, a biotechnology company pioneering RNA exon editing therapies for human diseases. He previously held key positions in Pfizer's Neuroscience and Rare Disease Research Units, where he directed research teams and participated in business development initiatives. He has deep expertise in developing preclinical models to elucidate disease mechanisms and extensive experience leading drug discovery programs from target validation through clinical candidate selection and IND-enabling activities, including comprehensive research and clinical plans for multiple gene therapy programs. He earned his PhD in pathology and completed a postdoctoral fellowship at the University of Rochester, is an inventor on several patents, has authored numerous scientific publications, and serves on HNF's TRIAD Council.

Wayne S. Berberian, MD is an orthopaedic foot and ankle surgeon, educator, and researcher with over twenty years of experience treating hereditary motor and sensory neuropathies, evaluating and treating patients with Charcot-Marie-Tooth Disease using both non surgical and surgical methods. He trained in the Six Year Combined BA MD Program conducted jointly by Lehigh University and The Medical College of Pennsylvania, completed a research fellowship in bone regeneration at the Hospital for Special Surgery and an orthopaedic residency at New Jersey Medical School, and earned an MBA in Healthcare Administration from the University of Tennessee. He is currently Professor and Vice Chair of the Department of Orthopaedics and Section Chief of the Foot and Ankle Service at Hackensack Meridian School of Medicine.

Sheba Bergman-Golden is a Registered Dietitian Nutritionist licensed in New York, Connecticut, Texas, and Utah. She holds an MSc in Nutrition and Exercise Physiology from Teachers College, Columbia University, and a PhD in Chemistry from Tel Aviv University, and completed dietetic internships at Mt. Sinai's Weight and Eating Disorders Group, Blythedale Children's Hospital, New York Presbyterian Hospital's Medicine/Surgery department, and Columbia University Athletics working with Division 1 collegiate athletes. She is the founder and CEO of Collage Nutrition PLLC, a private practice that focuses on nutrition throughout the lifecycle, and VP of Project Management at Miralinc Pharma Inc, a company focused on bringing HDAC6 inhibitors to market for the treatment of hereditary and acquired neuropathies.

Dr. Robert Burgess received his B.S. in Biochemistry from Michigan State University in 1990 and his Ph.D. in Neuroscience from Stanford University in 1996, and after a postdoctoral fellowship at Washington University in St. Louis he took a faculty position at The Jackson Laboratory in Bar Harbor in 2001, where he is now a full Professor. Research in the Burgess lab seeks to understand the molecular mechanisms of synapse formation and maintenance at the peripheral neuromuscular junction and in the retina, basic mechanisms with direct relevance to human neuromuscular and neurodevelopmental disorders. The lab is heavily invested in developing and studying precision mouse models of inherited peripheral neuropathies (Charcot-Marie-Tooth disease) and increasingly uses them to test therapeutic strategies in preclinical studies, especially gene therapy approaches, with the goal of translating those findings to patients.

Dr. Joshua Burns is the Jeweler's Charity Fund Endowed Chair and Director of the Disability Prevention Program at St. Jude Children's Research Hospital in Memphis, Tennessee, where he leads a translational research program focused on precision measurement and personalized healthcare for pediatric patients with neurologic diseases and survivors of childhood cancer. His work integrates clinical neuroscience and cancer epidemiology to advance early detection, optimize functional outcomes, and prevent long-term disability. Prior to his appointment at St. Jude in 2024, he served as Dean of the School of Health Sciences at the University of Sydney, Australia.

Kayla Cornett, PhD, is an NIH funded postdoctoral research fellow at the University of Sydney and Children's Hospital at Westmead and an expert in clinical outcome measurement for pediatric neuromuscular diseases. As an early career researcher she has over 35 publications, including a seminal report in the Annals of Neurology on the natural history of Charcot-Marie-Tooth disease during childhood. She collaborates with leading Charcot-Marie-Tooth disease researchers internationally, with her research focusing on reliable and sensitive assessment of function in children with neuromuscular diseases.

Dr. Jahannaz Dastgir is a pediatric neurologist in Morristown, New Jersey, affiliated with multiple hospitals in the area, with more than a decade in practice. She treats disorders of the brain in children, including headaches, seizures, epilepsy, multiple sclerosis, sleep disorders, and neuromuscular disease.

Peter B. Kang, MD is a pediatric neurologist and physician scientist with subspecialty certification in neuromuscular medicine who diagnoses and treats children with hereditary neuropathy, and serves as Professor of Pediatrics and Chief of the Division of Pediatric Neurology at the University of Florida College of Medicine. His research has been funded by the National Institutes of Health, the Centers for Disease Control and Prevention, the Muscular Dystrophy Association, and the Xtraordinary Joy Foundation, and he serves as an associate editor for Muscle & Nerve and on the editorial boards of Neurology and Pediatric Neurology. He co-edited a textbook on pediatric electromyography published in 2017, has lectured at the national conferences of the AAN, AAP, AANEM, Child Neurology Society, and MDA, and was awarded a University of Florida Foundation Research Professorship in 2020.

Dr. Lucia Notterpek is Professor and Associate Dean of Biomedical Research at the School of Medicine, University of Nevada, Reno. She investigates how the loss of myelin, the glial insulation around axons, contributes to the pathogenesis of hereditary and age-related neural disorders. Her laboratory studies peripheral neuropathies, including CMT and trigeminal neuralgia, with a focus on glial biology and lipid metabolism, working to understand the subcellular changes within neural cells that underlie the progressive nature of these disorders and normal aging-associated myelin degeneration. A major emphasis of her research concerns dietary approaches that could support the maintenance of healthy myelin throughout the lifespan and its repair in disease. She has authored over 70 publications, reviews, and book chapters, and serves on research advisory and grant review panels for private and public organizations.

Dr. Sindhu Ramchandren is a board-certified neurologist and neuromuscular specialist who completed her medical degree at the University of Texas-Houston, her neurology residency at the University of Pennsylvania, a clinical neurophysiology-EMG fellowship at Johns Hopkins University, and a master's degree in clinical research design and statistical analysis at the University of Michigan. She was medical director of the Muscular Dystrophy Care Center and the CMT Center of Excellence at the University of Michigan, where her clinical program cared for pediatric and adult CMT patients and her research developed and validated patient-centered clinical trial outcome measures, and she later served as Medical Director at PRA Health Sciences. She is currently Executive Medical Director, Neuroscience and Disease Cluster Lead for Neuroimmunology and Neuromuscular Disorders at Johnson & Johnson.

Dr. Michael Sereda is Professor of Neurology and Group Leader in the Department of Neurogenetics at the Max Planck Institute of Experimental Medicine in Goettingen, Germany. A former postdoctoral fellow in the group of Prof. K.-A. Nave, he completed his neurology residency at the University of Goettingen, where he is currently a Consultant Neurologist. His research covers Schwann cell and molecular biology, axon-glia interaction, and the disease mechanisms of Charcot-Marie-Tooth disease. He generated a transgenic rat model of CMT1A used to analyze modifier genes and epigenetic factors and to evaluate experimental treatment strategies, and has identified biomarkers of disease severity in CMT1A patients that he is validating across Europe to support future clinical trials.

Dr. Thomas has cared for people with CMT and conducted CMT research for over 30 years, favoring an inter-professional, patient-centered approach; his past research focused on histological studies in CMT1B, he is US lead investigator on two CMT clinical trials, and with European colleagues he identified the gene mutation responsible for DI CMT C and characterized its cell biology. He serves as Founding Chair and Professor in the Department of Neurology at Hackensack Meridian School of Medicine and as Clinical Affiliate Professor at Seton Hall University, and at Hackensack University Medical Center he chairs the Neuroscience Institute and is Founding Director of the Multiple Sclerosis Center and the Hereditary Neuropathy Foundation Center of Excellence. He was previously a tenured Professor of Neurology at St. Louis University, where he directed the National MS Society Multiple Sclerosis Center and the Hereditary Neuropathy Foundation Center of Excellence.

Corinne Weinstein was born and raised in Colorado and completed her undergraduate coursework and Pharm.D. at Regis University. She works as an oncology pharmacist at an infusion center in Lafayette, Colorado, where as an oncology pharmacist she is in a unique position to educate her colleagues not only about CMT and related inherited neuropathies such as HSAN, but also about the detrimental effects neurotoxic chemotherapy can have in a CMT or HSAN patient. Despite having symptoms of CMT since childhood, including high arches and hammertoes, she has never received an official genetic diagnosis despite whole genome sequencing, and her clinical presentation is consistent with an unknown type of what her neurologist believes to be hereditary sensory and autonomic neuropathy (HSAN).

Dianna E. Willis, Ph.D., heads the Laboratory for Axonal and RNA Biology, is Director of the Center for Pain Research, and serves as Associate Director at the Burke Neurological Institute, as well as Assistant Professor of Neuroscience at Weill Cornell Medicine and Director of the Burke-Blythedale Program in Pediatric Clinical Neuroscience. She received her undergraduate degree in Biology from the University of Pittsburgh in 1994 and her Ph.D. in Molecular Biology and Genetics from the University of Delaware in 2002, followed by postdoctoral training at Nemours Biomedical Research and a visiting scientist position at Vrije Universiteit in the Netherlands. Her research focuses on how aberrant axonal translation may lead to maladaptive plasticity as seen in neuropathic pain and neuropathy.