The Pediatric Epilepsy Research Foundation® (PERF®) was established in 2004 as a not-for-profit foundation to support research in pediatric epilepsy and other pediatric neurologic conditions.
In 1994, two pediatric neurologists, Roy D. Elterman, MD (1) and W. Donald (Don) Shields, MD (2) filed an Investigational New Drug (IND) application with the Food and Drug Administration (FDA) to initiate a study of vigabatrin for the treatment of newly diagnosed infantile spasms. They organized a national collaborative group, the Vigabatrin Infantile Spasms Study Group (VISSG) to allow participating child neurologists access to vigabatrin for patients with infantile spasms until the drug was approved by the FDA.
Drs. Elterman and Shields received approval from the FDA to proceed with a single-blind, high dose versus low dose vigabatrin in newly diagnosed infantile spasms, which the members of the VISSG conducted between 1996-2001. The drug manufacturer, Aventis, later decided not to seek approval for vigabatrin in the United States (US). A start-up company, Ovation Pharmaceuticals, eventually purchased US rights for vigabatrin with the plan to seek FDA approval. The VISSG data proved to be essential for FDA approval. Because the VISSG study was not included in the purchase from Aventis, Ovation agreed to pay royalties for the data. It was decided that the highest and best use of that money would be to establish the Pediatric Epilepsy Research Foundation® as a not-for-profit foundation to support pediatric neurology research.
PERF® funded it first grant in 2010. Since that time, more than $18 million has been awarded to support more than 65 research projects, which includes collaborative grants with Child Neurology Foundation (CNF), Children Neurology Society (CNS), American Epilepsy Society (AES), and endowments to the University of California Los Angeles (UCLA), University of Texas Southwestern (UTSW), University of Miami, and University of Utah.
(1) Partner at Dallas Pediatric Neurology Associates between 1981 and 2011.
(2) Chief, Division of Pediatric Neurology at the University of California Los Angeles (UCLA), 1980-2005.
(1)(2) https://pubmed.ncbi.nlm.nih.gov/11673582/, Elterman RD, Shields WD, Mansfield KA, Nakagawa J; US Infantile Spasms Vigabatrin Study Group, “Randomized trial of vigabatrin in patients with infantile spasms”, Neurology 2001 Oct 23;57(8): 1416-21. doi:10.1212/wnl.57.8.1416.
(1)(2) https://pubmed.ncbi.nlm.nih.gov/20404353/, Elterman RD, Shields WD, Bittman RM, Torri SA, Sagar SM, Collins SD.
Vigabatrin for the treatment of infantile spasms: final report of a randomized trial. J Child Neurol. 2010 Nov;25(11):1340-7. doi: 10.1177/0883073810365103. Epub 2010 Apr 19.
Enhance the quality of life of children with neurological disorders. To accomplish this mission the Foundation, in particular seeks to support:
- Research in pediatric epilepsy (primarily), but all areas of pediatric neurology research are considered.
- The education and recruitment of young physicians in the field of child neurology.
Roy D. Elterman, MD
President & Treasurer
Dr. Roy Elterman is President of the Pediatric Epilepsy Research Foundation. Dr. Elterman was born in Miami, FL. He graduated from the University of Miami Miller School of Medicine in 1974. During medical school he was elected to Alpha Omega Alpha Honor Medical Society. He trained in pediatrics for 2 years at the University of California, San Francisco. This was followed by a year of adult neurology training at the University of Miami/Jackson Memorial Hospital and a two year pediatric neurology fellowship at the University of Texas Health Science Center in San Antonio. Elterman served his country as the chief of pediatric neurology at USAF Wilford Hall Medical Center, San Antonio, TX from 1979-1981. He is Board Certified in Neurology with special qualification in child neurology by the American Board of Psychiatry and Neurology (1981). He engaged in the clinical practice of child neurology at Dallas Pediatric Neurology Associates for thirty years, retiring from clinical practice in 2011. During that time, he was a founding member and active participant of the Neuro-Oncology Clinic at Children's Medical Center-Dallas and at times attended as a clinical professor of neurology (UTSW) on the pediatric neurology service. He has been active in the Child Neurology Society chairing both the Practice Committee and Legislative Affairs Committee and serving on the Training Committee and Nominating Committee. He is a founding member of the Child Neurology Foundation and served as Chairman of the Capital Acquisition Committee. Elterman has been an examiner for the Part II examination of the American Board of Psychiatry and Neurology and was on their committee to develop the re-certification examination in child neurology. He is a Fellow of the American Academy of Neurology (emeritus) and a member of both the Child Neurology Society (emeritus) and the American Epilepsy Society. His research interests and publications have been primarily in pediatric neuro-oncology and pediatric epilepsy. He has been active in the development of several recently marketed anti-epilepsy medications and played a key role in making vigabatrin available for the treatment of infantile spasms in the United States.
Donald Shields, MD
Vice-President & Secretary
Renée A. Shellhaas, MD, MS
Karen A. McEwen
Jo Anne Nakagawa
Director, Grants Review Liaison
Jo Anne Nakagawa joined PERF™ in September 2022 as Director, Grants Review Liaison. Her previous experience includes 17 years at the TSC Alliance as Director, Clinical Projects and TSC Clinic Liaison where she coordinated the development of the TSC Natural History Database and Biosample Repository projects. She also served as the principal liaison between the TSC Alliance and network of TSC Clinics in the U.S., which expanded from 16 to 70 clinical institutions providing multidisciplinary care for those affected. After graduating from the University of California Los Angeles (UCLA) with a bachelor’s degree in biology, she didn’t stay away very long. Within 5 months, she was back at UCLA as a research assistant in a rheumatology laboratory for one year. Jo Anne’s career at UCLA spanned 30 years during which time she acquired numerous laboratory and clinical skills. From 1980 to 2005, she worked in Pediatric Neurology for Dr. Don Shields, who with Co-Principal Investigator, Dr. Elterman (in Dallas) conducted the investigator-initiated, multicenter, randomized trial of vigabatrin in treating children with newly diagnosed infantile spasms between 1996-2001 (https://pubmed.ncbi.nlm.nih.gov/11673582/). She and Dr. Elterman’s research assistant, Karen (Mansfield) McEwen were the lead study coordinators. Concurrent with coordinating more than six industry-sponsored pediatric clinical epilepsy trials, Jo Anne managed the regulatory aspects of the vigabatrin study, and shared responsibilities with Karen in monitoring the 9 participating clinical sites, curating the clinical data, and communicating with the FDA. Jo Anne is very happy to be at PERF™ with her former colleagues. She enjoys traveling with her husband, gardening, going to the Stanford women’s basketball games, spending time with her grandchildren, and watching her favorite shows on DVD while on the treadmill.
Board of Directors
Roy D. Elterman, MD
President & Treasurer
Donald Shields, MD
Vice-President & Secretary
Renée A. Shellhaas, MD, MS
Stephen Ashwal, MD
Dr. Stephen Ashwal is Distinguished Professor and former Chief of the Division of Child Neurology in the Department of Pediatrics at Loma Linda University School of Medicine. He is co-senior editor with Dr. Phillip Pearl for one of the main textbooks in the field of child neurology, "Pediatric Neurology: Principles and Practice (2012)". He has served as President of the Child Neurology Society and has been active in child neurology practice guidelines development and is a member of the Guidelines Development Subcommittee of the American Academy of Neurology. He has been responsible for the development of pediatric guidelines related to brain deaths, the vegetative state, and the evaluation of child with autism, cerebral palsy, developmental delay, headaches and status epilepticus. His research has involved traumatic brain injury as well as the use of neural stem cells for neonatal hypoxic ischemic brain injury.
Martina Bebin, MD, MPA
Dr. Bebin is Professor of Neurology and Pediatrics at the University of Alabama at Birmingham. Her primary research interest is in tuberous sclerosis complex (TSC) and has been involved in several NIH funded TSC clinical research projects. She is co-director of the UAB TSC Center of Excellence, which is a comprehensive, multidisciplinary clinic for all ages. She has been involved in clinical epilepsy and TSC research for over 25 years and was the site PI for the Autism Center of Excellence grant investigating early biomarkers for autism spectrum disorders in infants with TSC(TACERN) and administrative PI for a NIH P20 grant, “Potential EEG Biomarkers and Antiepileptogenic Strategies for Epilepsy in TSC”. The identification of the EEG Biomarker provided the foundation and objectives for a NIH U01 project, “Preventing Epilepsy Using Vigabatrin in Infants with TSC” (PREVeNT Trial), 2016-2023. She also serves on the Department of Defense Congressionally Directed Medical Research Programs (DOD-CDMRP) for TSC and on the FDA Orphan Product Development grant review panels, American Board of Psychiatry and Neurology “Maintenance of Certification” Child Neurology Committee, and has been a member of the TSC Alliance Board of Directors.
Teri J. Behnke serves as a lay member of the PERF® Board of Directors. She has more than 25 years administrative experience at the University of Michigan (UM) in the Department of Pediatrics, Division of Neurology. Her responsibilities include pre- and post-award administration of faculty research grants; development of grant budgets and justification; and collaboration with principal investigators and their coordinators with the process of submitting IRB applications. She also provides Neurology Division Faculty and Administrative Support as well as serving as the coordinator of the Child Neurology Residency Program at Michigan Medicine. Her extracurricular activities include serving as the Vice President of the Programs Coordinators of Child Neurology (PCCN) at the Child Neurology Society and on several Graduate Medical Education Program Committees at Michigan Medicine. Teri has given professional presentations at Michigan Medicine and the Child Neurology Society Annual Meetings. She also is the recipient of awards recognizing her dedication and work performance at Michigan Medicine and the Department of Pediatrics.
Outside of work, Teri enjoys traveling with her husband and spending time with family, friends and their 4-legged children, as well as watching UM sports – “Go Blue”!
Peter Camfield, MD
Dr. Peter Camfield is Professor Emeritus, Department of Pediatrics, Dalhousie University and the IWK Health Centre, Halifax, Nova Scotia. He received his BA from Queen's University and MD at Harvard University. Following a Medical Internship at McGill he continued with a pediatric residency at the University of Michigan and a Child Neurology residency at McGill University. Along with Dr. Carol Camfield he continues a research program centered on the natural history of childhood epilepsy, medical and social outcomes. The foundation of much of this research is the Nova Scotia Population-Based Childhood Epilepsy Cohort which includes every child in the Province of Nova Scotia who developed epilepsy between 1977-1985. Follow up of this cohort has been a gold mine of information about practical issues in epilepsy. Along with Dr. Carol Camfield, Dr. Peter Camfield received the AES, Milken Award (Distinguished Clinical Investigator) in 1990 and the Canadian Pediatric Society Career Research Award 2010. In 2009 he received the Hower Award from the Child Neurology Society. He has >200 peer reviewed publications, >250 peer reviewed presentations, >50 book chapters and >200 invited lectures. He has served on the editorial boards of 5 medical journals and is a regular reviewer for 9 journals. The peak of his pediatric career was as a co-star on a segment of Sesame Street (Canadian), filmed in 1976 and still running. Dr. Camfield has no relevant disclosures but does admit to unabashed enthusiasm for sailing, skiing, cycling, jogging and grandchildren.
Dennis Dlugos, MD
Dennis J. Dlugos, MD, is Professor of Neurology and Pediatrics in the Perelman School of Medicine at the University of Pennsylvania; and Director, Pediatric Epilepsy Program at Children’s Hospital of Philadelphia (CHOP). He received his MD from Columbia University College of Physicians and Surgeons, New York. He went on to complete his internship in Pediatrics at the National Naval Medical Center, Bethesda, Maryland; a residency in Neurology / Child Neurology at the University of Pennsylvania Medical Center and CHOP; and his fellowship in Epilepsy at CHOP. Dr. Dlugos serves as Vice-President of The Epilepsy Study Consortium (TESC) and is a member of the Pediatric Epilepsy Research Consortium (PERC). His clinical and research interests include clinical trials, epilepsy genetics, and epilepsy surgery. Articles authored or co-authored by Dr. Dlugos have been published in Neurology, Annals of Neurology, Lancet Neurology, Epilepsia, Lancet, Nature, the New England Journal of Medicine, and other journals. Dr. Dlugos has helped train more than 30 pediatric epilepsy fellows. He has lectured extensively throughout the US, Europe, South America and Asia.
Deborah Hirtz, MD
Dr. Deborah Hirtz is a Professor in the Department of Neurological Sciences and Pediatrics, University of Vermont School of Medicine. She received her undergraduate degree at the University of Chicago and medical degree at Hahnemann Medical College. She is board-certified in Pediatrics and Neurology, and trained at the Children's Hospital Medical Center and George Washington University in Washington, DC. She had a long career as a Program Director for Clinical Trials and Studies at the National Institute of Neurological Disorders and Stroke, NIH, where she managed a large portfolio of research focused on clinical trials, seizure disorders in children, autism and other developmental disorders, cerebral palsy, and neurodevelopmental disorders of infants and children in lower and middle income countries. She was a clinical consultant in Child Neurology for the Montgomery County Health Department, the National Children's Center, and Children's National Medical Center of D.C. In her current position at the University of Vermont, she focuses on mentoring and teaching about clinical research. She is a member of Project TENDR (Targeting Environmental NeuroDevelopmental Risks) which advocates for reducing environmental toxins that affect children. She is a member of the Scientific Advisory Boards of the Pediatric Epilepsy Research Foundation, the North American Antiepileptic Drug Pregnancy Registry, the NeuroNetworks Fund, and is the Chair of the Scientific Advisory Committee of the Canadian CHILD-BRITE Network.
Lori Jordan, MD, PhD
Lori Jordan, MD, PhD is an Associate Professor of Pediatrics, Neurology, and Radiology at Vanderbilt University Medical Center in Nashville, TN. She completed residency in Pediatrics and Child Neurology followed by a fellowship in Vascular Neurology (Stroke) at the Johns Hopkins Hospital in Baltimore. Dr. Jordan also completed a PhD in Clinical Investigation at the Johns Hopkins Bloomberg School of Public Health. She has previously served as Associate Director for the Child Neurology residency programs at Johns Hopkins and Vanderbilt and as Program Director for the Child Neurology residency program at Vanderbilt. Dr. Jordan has served on the Child Neurology Society Board of Directors, first as Councilor from the South (2018-2020) and currently as Secretary-Treasurer (2020-2024). She is the founding and current Secretary-Treasurer for the International Pediatric Stroke Organization. She serves on the editorial boards of several journals: Pediatric Neurology, Neurology, and as an assistant editor for Stroke. Dr. Jordan has > 125 peer reviewed publications. With NIH funding, her research has focused on understanding predictors of recovery and epilepsy after stroke in children, brain injury in children with chronic illnesses, and using novel neuroimaging methods to understand cerebral hemodynamics and primary and secondary stroke prevention in children and young adults with sickle cell disease.
Niko Kaciroti, PhD
Niko Kaciroti is a Research Scientist in the Departments of Pediatrics and Biostatistics at the University of Michigan. He is a faculty member at the Center for Computational Medicine and Bioinformatics, Michigan Institute for Data Science, Biosocial Methods Collaborative, and Precision Medicine. Dr. Kaciroti received his PhD in Biostatistics from the University of Michigan. Since then he has collaborated in multidisciplinary research at the University of Michigan and with researchers across the United States and internationally. Dr. Kaciroti research interest is in developing and implementing statistical methodologies with a focus on pediatric populations. His main methodological research is in developing and using Bayesian models for analyzing longitudinal data from clinical trials with dropouts, as well as Bayesian methods for nonlinear and dynamic models. Kaciroti is an investigator in a number of large NIH funded grants including neonatal neurology multi-site research, obesity and family-based prevention, relationship between mobile technology use in children and their development. He serves as a scientific reviewer for the NIH and PCORI. Dr. Kaciroti is an elected member of the International Statistical Institute and serves as statistical editor for the American Journal of Preventive Medicine and the International Journal of Behavior Nutrition and Physical Activity.
Sookyong Koh, MD, PhD
Dr. Koh is a division chief of Pediatric Neurology, Children’s Hospital & Medical Center and Professor of Pediatrics, University of Nebraska Medical Center in Omaha. Her research interest includes the investigation of the role of immunity and inflammation in epileptogenesis and long term cellular and molecular consequences of early life seizures on the developing brain. In recognition of her independent contribution to pediatric epilepsy research, she received the Dreifuss-Penry Epilepsy Award from American Academy of Neurology. Her research has been supported by NIH/NINDS, K08, K02, R21 and R01 grants. She serves on the Scientific & Medical Advisory Board of the CACNA1A Foundation, Dravet Syndrome Foundation, American Epilepsy Foundation, NORSE Institute and is an associate editor of the peer-reviewed, scientific publication, Epilepsy and Behavior Reports.
- John Murray, MBA
- Herbert S. “Pug” Winokur, Jr., PhD
July 30, 2022: Michael V. Johnston, MD, Professor Emeritus of Pediatrics and Neurology at Johns Hopkins University School of Medicine and former Chief Medical Officer and Executive Vice President at the Kennedy Krieger Institute.
PERF® Board Member: 2015-2021.
July 5, 2022: Eric J. Weatherford, JD, law partner at Husch Blackwell, Dallas, TX.
PERF® Board Member: 2016-2022.
The PERF® board members serve a 3-year term without compensation, however the President-Elect and future Presidents receive a stipend for their administrative responsibilities.