Therapeutic Research In Accelerated Discovery (TRIAD) Council is composed of CMT thought leaders engaged in collaborative planning and decision making to provide regular guidance and direction to HNF’s research strategy. This network of professionals will review grant proposals, provide expert guidance and assess project outcomes to advance therapeutic development for CMT.
Lucia Notterpek, PhD
Chief Scientific Officer
Dr. Lucia Notterpek is Professor and Associate Dean of Biomedical Research at the School of Medicine, University of Nevada, Reno, Nevada. Dr. Notterpek investigates how the loss of glial insulation around axons, called myelin, contributes to the pathogenesis of hereditary and age-related neural disorders. Her laboratory studies peripheral neuropathies, including CMTs and trigeminal neuralgia, with focus on glial biology and lipid metabolism. Current research is focused on understanding the subcellular changes within neural cells that underlie the progressive nature of these disorders and normal aging-associated myelin degeneration. A major emphasis of Dr. Notterpek’s research concerns dietary approaches that could be utilized to support the maintenance of healthy myelin throughout lifespan and/or its repair in disease paradigms. The laboratory is equipped with models and reagents, including small molecule therapeutics and genetic models to attain these goals. She has authored and co-authored over 70 publications, reviews and book chapters. Nationally and internationally, she serves on research advisory and grant review panels for private and public organizations.
Wayne Berberian, MD
Orthopaedic Foot & Ankle Surgeon, Educator & Researcher
Wayne S. Berberian, MD is an orthopaedic foot and ankle surgeon, educator, and researcher with over twenty years of experience in treating hereditary motor and sensory neuropathies. In his practice, Dr. Berberian evaluates and treats patients with Charcot-Marie-Tooth Disease using both non surgical and surgical methods. During his 17 year tenure on the faculty at Rutgers University, he had the opportunity to perform reconstructive surgery on a multitude of patients with this challenging condition. Dr. Berberian is well versed in treating severe deformities and arthritis associated with CMT, and works with a multidisciplinary team of physicians and health care extenders.
Dr. Berberian began his training in the Six Year Combined BA MD Program that was conducted jointly by Lehigh University and The Medical College of Pennsylvania. Following a research fellowship in bone regeneration at The Hospital For Special Surgery- Cornell University Medical Center and Memorial Sloan Kettering Cancer Center, he began his orthopaedic residency in 1994 at New Jersey Medical School. After four more years of training, he returned to Philadelphia to engage in another fellowship offering additional experience in Reconstructive Surgery of the Foot and Ankle. Dr. Berberian completed his formal education with an MBA in Healthcare Administration awarded by the University of Tennessee.
In 1999, Dr. Berberian was invited back to New Jersey Medical School, where he served as a faculty member in the Department of Orthopaedic Surgery and Co-Chief of the Orthopaedic Foot and Ankle Service. He was subsequently asked to assume the mantle of Vice Chair and Residency Program Director, a position that he held for the next 17 years. In this capacity, he was the primary individual responsible for the training of over 100 orthopaedic surgeons currently practicing throughout the continental United States and Hawaii.
In addition to his contributions toward clinical care and education, Dr. Berberian is a researcher who has authored over 80 published articles, grants, book chapters, monographs, and abstracts. He has taught several courses for the American Academy of Orthopaedic Surgeons, the American Orthopaedic Foot and Ankle Society, the Council of Orthopaedic Residency Directors, and other entities.
Dr. Berberian is recognized annually as a Castle Connolly Top Doctor. He has been invited by the American Board of Orthopaedic Surgery to assist in accreditation of other surgeons by serving as an Oral Board Examiner. He is a Fellow of both the American Academy of Orthopaedic Surgeons and the American Orthopaedic Association, having served for three years on the AOA Academic Leadership Committee. He also served for three years as a Member of the House of Delegates of the American Medical Association.
He served as Chair of the Graduate Medical Education Committee at New Jersey Medical School. He is a long-time editorial reviewer for the journals Clinical Orthopaedics and Related Research and Foot and Ankle International, and has been designated as a Top CORR Reviewer. He has served on a number of scientific advisory boards for orthopaedic biotechnology corporations.
Dr. Berberian is currently Professor and Vice Chair of the Department of Orthopaedics at Hackensack Meridian School of Medicine. He is Section Chief of the Foot and Ankle Service at Hackensack University Medical School. His practice is located in Maywood, NJ.
Renée JG Arnold, PharmD, RPh
President & CEO, Arnold Consultancy & Technology LLC
Renée JG Arnold completed her undergraduate training at the University of Maryland and received her Doctor of Pharmacy degree from the University of Southern California in Los Angeles. She also completed a one-year post-doctoral residency at University Hospital in San Diego/University of California at San Francisco School of Pharmacy. Dr. Arnold was most recently Principal, IMS Health; President and Co-Founder of Pharmacon International, Inc. Center for Health Outcomes Excellence.
Dr. Arnold is currently President & CEO, Arnold Consultancy & Technology LLC, headquartered in New York City, and Practice Lead, HEOR, Quorum Consulting, Inc., based in San Francisco, CA, where she oversees outcomes research and develops affiliated software for pharmaceutical and federal government programs. Her special interest in evidence-based health derives from her research that deals with use of technology to collect and/or model real-world data for use in rational decision-making by healthcare practitioners and policy makers. Dr. Arnold’s academic titles include Adjunct Associate Professor, Master of Public Health program, Department of Preventive Medicine at the Mount Sinai School of Medicine, where she has developed and teaches the pharmacoeconomics coursework. She is also Full Adjunct Professor at Long Island University College of Pharmacy and Health Sciences. Dr. Arnold is a founding member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and is an author/co-author of numerous articles and book chapters in the areas of pharmacology, pharmacoeconomics and cost containment strategies.
Robert D. Bell, PhD
Associate Research Fellow, Rare Disease Research Unit, Pfizer World Wide Research and Development
Robert received a PhD in Pathology studying the role of cerebral vascular dysfunction in Alzheimer’s disease at the University of Rochester. He then completed an AHA funded postdoctoral fellowship in cardiovascular biology and held a Research Assistant Professor position in the Department of Neurosurgery at the University of Rochester Medical Center. He joined Pfizer’s Neuroscience Research Unit in 2012 and built a preclinical research lab focused on vascular targets in central nervous system (CNS) disorders and drug delivery across the blood-brain barrier. In 2017, Robert joined the Rare Disease Research Unit where he leads a group focused on developing novel AAV-based gene therapies for the rare neurological conditions. Robert has an interest in understanding molecular mechanisms that regulate AAV biodistribution and cellular trafficking at the blood-brain barrier and in the CNS.
Robert Burgess, PhD
Faculty of The Jackson Laboratory in Bar Harbor, Maine
Dr. Robert Burgess has a long-standing interest in basic Neurobiology research. Dr. Burgess received his B.S. in Biochemistry and Physiology from Michigan State University in 1990, and his Ph.D. in Neuroscience from Stanford University in 1996. Following postdoctoral training at Washington University, St. Louis, Dr. Burgess joined the faculty of The Jackson Laboratory in Bar Harbor, Maine in 2001. His research program uses genetic approaches in mice to examine neurodevelopmental and neuromuscular diseases, including mouse models of Charcot-Marie-Tooth disease and other inherited peripheral neuropathies.
Areas of study include the use of mouse models to understand pathophysiology, developing and improving animal models for preclinical research, and exploring therapeutic strategies using mouse models of human disease. The Burgess lab is funded by the National Institutes of Health and has also received support from numerous disease foundations. Dr. Burgess has published over 50 peer-reviewed publications, including papers in high impact journals such as Nature and Neuron.
Erik Ensrud, MD
Professor, Orthopaedics & Rehabilitation Dept. & the Neurology Dept., Oregon Health & Sciences University School of Medicine
Erik Ensrud, MD has a joint appointment as a Professor in both the Orthopaedics and Rehabilitation department and the Neurology department at the Oregon Health and Sciences University School of Medicine (OHSU). His clinical practice focuses on nonsurgical treatment of neuromuscular disorders, physical medicine and rehabilitation, and considerate use of electromyography. Dr. Ensrud’s research interests include effective use of orthotics for nerve and muscle disease, exercise in neuromuscular diseases such as hereditary neuropathies, efficient and accurate physical examination of the neuromuscular system, clinical trials for neuromuscular diseases, electromyography education, and neuromuscular disorders unique to service veterans.
Joseph J. Higgins, MD, FAAN
Medical Director, Neurology for Quest Diagnostics and the Laboratory Director at Athena Diagnostics
Prior to joining Quest Diagnostics in 2012, Dr. Higgins was a Professor at Weill Cornell Medical College where he directed the Autism Research Program and was the principal investigator on several private foundation and NIH research grants focused on clinical neurogenetics. For over 10 years, he held senior leadership positions in the federal and state governments at the National Institute of Neurological Disorders and Stroke and the New York State Department of Health. He is a fellow of the American Academy of Neurology with board certifications in Pediatrics by the American Board of Pediatrics and Neurology with Special Qualification in Child Neurology by the American Board of Psychiatry and Neurology. He has authored more than 90 peer‐reviewed publications, six book chapters, and eight reviews articles in the field of neurogenetics. He is the CLIA Laboratory Director at the Athena Diagnostics lab and is a Voluntary Clinical Professor of Pediatric Neurology at Weill Cornell Medical College.
Dr. Higgins earned his bachelor’s degree in biology from Marist College and finished his medical degree at New York University.
Peter B. Kang, MD
Pediatric Neurologist & Physician Scientist, Professor of Pediatrics & Chief of the Division of Pediatric Neurology -University of Florida College of Medicine.
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 in his clinic. He is 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 (NIH), the Centers for Disease Control and Prevention (CDC), the Muscular Dystrophy Association (MDA), and the Xtraordinary Joy Foundation. He serves as an associate editor for Muscle & Nerve, and also serves on the editorial boards of Neurology and Pediatric Neurology. A textbook on pediatric electromyography that he co-edited was published in 2017. He has been invited to present lectures on pediatric neuromuscular disorders at the annual national conferences of the American Academy of Neurology (AAN), American Academy of Pediatrics (AAP), American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM), Child Neurology Society (CNS), and Muscular Dystrophy Association (MDA). In 2020, he was awarded a University of Florida Foundation Research Professorship.
Brett Langley, PhD
Director of Neural Epigenetics at the Burke Medical Research Institute, Assistant Professor of Neurology and Neuroscience at Weill Medical College of Cornell University
Brett Langley completed his undergraduate (1995) and Masters degree with First Class Honors (1999) from the University of Waikato, and his Ph.D. degree in Molecular Medicine (2002) from the University of Auckland School of Medicine in New Zealand. Following his Ph.D. studies, Brett did postdoctoral research training Dr. Rajiv R. Ratan at the Beth Israel Deaconess Medical Center and Harvard Medical School. He then joined the Faculty at the Burke Medical Research Institute and was appointed to the position of Instructor of Neurology and Neuroscience at Weill Medical College of Cornell University.
His area of research focuses on understanding the molecular events that determine a neuron’s or axon’s fate following injury or during disease, and ultimately, whether they can be modulated therapeutically to promote better outcomes in patients.
Nadia Litterman, PhD
PhD Collaborations Director at Collaborative Drug Discovery (CDD)
Nadia Litterman, PhD is Collaborations Director at Collaborative Drug Discovery (CDD), where she aims to identify and develop collaborations for drug discovery using CDD’s innovative informatics technologies. She has a long standing interesting in finding therapeutics for neuronal disorders and rare diseases, with more than 10 years of broad research experience in the areas of chemistry, cell biology, and neuroscience. During postdoctoral research in the laboratory of Dr. Lee Rubin at Harvard University, she utilized stem cell models of the rare, genetic, early onset motor neuron disorder Spinal Muscular Atrophy (SMA) to search for novel therapeutic strategies.
She identified an opportunity for drug repurposing of an anti-cancer compound for SMA and found that this approach may be broadened for a second disease of motor neurons, Amyotrophic Lateral Sclerosis. As a National Science Foundation graduate fellow in the Pathology Department at Harvard Medical School, she led an investigation to explore biochemical processes that control protein trafficking in neurons. Her undergraduate research in the Chemistry department at Princeton University focused on free radical toxicity as it relates to protein misfolding and neurodegeneration.
Sindhu Ramchandren, MD, MS
Medical Director- Neurology, Medical Affairs at PRA Health Sciences
Dr. Sindhu Ramchandren is a board-certified neurologist and neuromuscular specialist who completed her medical degree at the University of Texas-Houston, neurology residency at the University of Pennsylvania, 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 is currently the Medical Director- Neurology, Medical Affairs at PRA Health Sciences. Before joining PRA in 2018, Dr. Ramchandren was the medical director of the Muscular Dystrophy Care Center and the CMT Center of Excellence at the University of Michigan. Her clinical program included caring for pediatric and adult CMT patients, and her research included development and validation of patient-centered clinical trial outcome measures. Dr. Ramchandren has over 14 years of experience in clinical neurology with expertise in Phase I-IV rare neurology clinical trials, a strong record of publications, invited presentations, and relationships with key opinion leaders in academia and patient advocacy groups.
Michael Sereda, MD, PhD
Professor of Neurology & Group leader in the Department of Neurogenetics, Max Planck Institute (MPI) of Experimental Medicine, Göttingen, Germany
Dr. Michael Sereda M.D. is Professor of Neurology and Group leader in the Department of Neurogenetics, Max Planck Institute (MPI) of Experimental Medicine, Göttingen, Germany. He was a postdoctoral fellow in the group of Prof K.-A. Nave, PhD at MPI. He also completed a Residency in Neurology in the Dept. of Clinical Neurophysiology and Neurology, University of Göttingen and is currently Consultant Neurologist there. Hisdomain of research is Schwann cell and molecular biology as well as axon-glia interaction and disease mechanisms of Charcot-Marie-Tooth disease.
He has generated a transgenic rat model of CMT1A which is helpful in the analysis of modifier genes, epigenetic factors, and in the evaluation of experimental treatment strategies. He has also recently identified biomarkers of disease severity in CMT1A patients and is currently validating markers in patients from across Europe which should help in performing clinical trials in the near future.
Amro Stino, MD
Assistant Professor, Dept. of Neurology – University of Michigan Medical School
Amro Stino, MD is an Assistant Professor in the Department of Neurology in the University of Michigan Medical School, Division of Neuromuscular Medicine. Dr. Stino has expertise in the treatment of neuromuscular disorders, with special clinical and research interest in the care of patients with acquired and hereditary peripheral neuropathy.
Dr. Stino obtained his Bachelor of Science degree in Brain, Behavioral, and Cognitive Sciences from the University of Michigan, Ann Arbor, which he completed in 2006. He received his medical degree from Wayne State University, School of Medicine in Detroit, MI in 2010 and completed a transitional year internship at St. Joseph Mercy Hospital, in Ann Arbor, MI. He then completed his neurology residency training at the Wayne State University, School of Medicine – Detroit Medical Center, followed by a fellowship in clinical neurophysiology / neuromuscular medicine at The Mayo Clinic in Arizona. He joined The Ohio State University faculty in 2015 as Director of the Peripheral Neuropathy Clinic and Autonomic Lab. During his time there, he oversaw expansion of diagnostic testing and clinical operations of both, helping provide more comprehensive neuropathy care for central and southern Ohio patients seeking multi-disciplinary neuropathy care. He helped obtain CMT center of excellence accreditation. While at Ohio State, he served as site investigator in the Pharnext PXT3003 trial in CMT1A. He also conducted an investigator initiated study evaluating the diagnostic value of foot architecture in CMT. He joined the University of Michigan faculty in 2019 as Director of the Peripheral Neuropathy clinic and Co-director of the Autonomic Lab. Currently, he remains actively involved in CMT research. He serves as site principal investigator on multi-center studies and is leading an investigator initiated phase 1b study as well. Dr. Stino is an advocate for patient awareness and education in neuropathy through patient advocacy organizations.
Florian P. Thomas, MD, MA, PhD, MSc
Director, Hereditary Neuropathy Center, Hackensack University Medical Center, Founding Chair & Professor, Department of Neurology, Hackensack Meridian School of Medicine
Dr. Thomas has cared for people with CMT and engaged in CMT research for over 30 years. He believes that an inter-professional, patient-centered approach is essential to help people with chronic illnesses live well despite their illness or disability. His past CMT research focused on histological studies in CMT1B. He is US lead investigator on 2 clinical trials of CMT. In collaboration with European colleagues he identified the gene mutation responsible for DI CMT C & characterized its cell biology.
He serves as Founding Chair & Professor in the Department of Neurology at Hackensack-Meridian School of Medicine, and as Clinical Affiliate Professor in the Department of Professional Psychology & Family Therapy at Seton Hall University in New Jersey. At Hackensack University Medical Center he is the Chair of the Neuroscience Institute and Founding Director of the Multiple Sclerosis Center and the Hereditary Neuropathy Foundation Center of Excellence. Previously he was a tenured Professor of Neurology, Adjunct Professor of Physical Therapy, and Associate Professor of Molecular Virology at St. Louis University in Missouri. There he directed the National MS Society Multiple Sclerosis Center, the Hereditary Neuropathy Foundation Center of Excellence, and the Clinical Research Unit of the Departments of Neurology and Psychiatry and served as Director of the Spinal Cord Injury Service and the Regional MS Center of Excellence at the St. Louis VA Medical Center, where he also founded the Pain Rehabilitation Service. He is board certified in spinal cord medicine, neurology, and neural repair and rehabilitation. He completed his residency at Case Western Reserve University and post-doctoral training at Columbia University & McGill University. He has graduate degrees in microbiology, psychology, molecular biology & health outcomes research from University of Bonn, McGill University & St. Louis University, respectively. He is editor-in-chief of the Journal of Spinal Cord Medicine and serves on other editorial boards.
Mitchell Warner, CPO
Prosthetist / Orthotist – President of Ortho Rehab Designs & Helios Bracing Inc
Mitchell Warner is the President of Ortho Rehab Designs and Helios Bracing Inc, in Las Vegas, Nevada. He received his undergraduate degree from New York University in 1984, and completed his training at New York University Post Graduate Medical School in Prosthetics and Orthotics, in 1988. He is an American Board Certified Prosthetist and Orthotist. Mr. Warner’s career started in New York, where he attended prosthetic and orthotic clinics on Long Island and New York City, and routinely treated hospital patients. He spent extensive time treating patients at NYU Medical Center, Hospital for Special Surgery, Lenox Hill Hospital, Bellevue Hospital, and Hospital for Joint Diseases.
Mitchell Warner founded Ortho Rehab Designs in Las Vegas, NV in 1991. His practice focused on amputees and patients with lower limb neurological loss. He soon learned that many patients who had Charcot Marie Tooth Disease, did not have many advanced options for bracing, as did his amputee patients for artificial limbs. Already using advanced carbon fiber procedures with prosthetics, this led him to develop new designs for Charcot Marie Tooth patients, and his inventing of the Helios Energy Storing Orthosis.
He has participated in a CMT leg brace research study with the Helios Orthosis, that was published in the Journal of Gait and posture in 2014. Mr. Warner’s clinic in Las Vegas, treats patients suffering from all types of neuropathy, however his practice does focus on advanced triplanar orthotic treatment for CMT patients. His current research is on developing new orthotic strategies with the use of 3D printing, and further advancement of carbon fiber and other composite technologies for lower limb leg bracing.
Dianna E. Willis, PhD
Associate Director, Burke Neurological Institute Director, Burke-Blythedale Program in Pediatric Clinical Neuroscience Assistant Professor, Brain and Mind Research Institute, Weill Cornell Medicine
Dianna E. Willis, Ph.D., is the head of the Laboratory for Axonal and RNA Biology, Director of the Center for Pain Research, and Associate Director at the Burke Neurological Institute, an Assistant Professor of Neuroscience at Weill Cornell Medicine, and Director of the Burke-Blythedale Program in Pediatric Clinic Neuroscience. Dr. Willis 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. Her postdoctoral training at Nemours Biomedical Research at the Alfred I. duPont Hospital for Children from 2002 – 2007 focused on the newly emerging understanding of local translation in neuronal axons.
After completing a visiting scientist position in the Department of Molecular and Cellular Neurobiology at Vrije Universiteit in the Netherlands in 2007, she returned to Nemours as an Assistant Research Scientist in the Center for Translational Neurobiology. In 2010, Dr. Willis was recruited to be the Director of the Center for Pain Research at the Burke Neurological Institute. Her research has focused on understanding how aberrant axonal translation may lead to maladaptive plasticity as is evident in neuropathic pain and neuropathy. In 2016, she was named Associate Director of the Burke Neurological Institute, and in 2018, Dr. Willis became Director of the Burke-Blythedale Program in Pediatric Clinical Neuroscience.