IFCR’s Science Director
Heidi Grabenstatter, PhD
Heidi Grabenstatter has dedicated her scientific career to understanding the underlying mechanisms of epilepsy and identifying potential therapeutics to inhibit the disease progression. After receiving a Ph.D. in Neuroscience from Colorado State University, Dr. Grabenstatter has spent over a decade conducting scientific research at the University of Wisconsin, University of Colorado Anschutz Medical Campus, and the University of Colorado Boulder using a multidisciplinary approach to better understand the mechanisms that contribute to the development and progression of epilepsy and associated comorbidities. Her commitment to epilepsy research is strengthened by her personal understanding of the extreme challenges that people with epilepsy face. She was diagnosed at age 5 with temporal lobe epilepsy that has been refractory to both medical and surgical therapies. Based on both her academic interests and personal experience with the disease, Heidi is committed to translational research to improve the lives of people with epilepsy and other neurological disorders. The combination of her passion, her academic experience, and her patient perspective make Dr. Grabenstatter uniquely positioned to act as a conduit between patients and caregivers with unmet needs and the CDKL5 clinical and research communities to foster innovative research solutions. In her free time, Heidi enjoys spending time with her family. She is the proud mom of three kids, Maggie (8), Harvey (7), and Sam (3).
Heidi can be reached at firstname.lastname@example.org
IFCR’s Science Advisory Board
Alysson R. Muotri, Ph.D
University of California San Diego, School of Medicine
Professor of Pediatrics
Professor of Cellular & Molecular Medicine
Director of the UCSD Stem Cell Program
Dr. Muotri earned a BSc in Biological Sciences from the State University of Campinas in 1995 and a Ph.D. in Genetics in 2001 from University of Sao Paulo, in Brazil. He moved to the Salk Institute as Pew Latin America Fellow in 2002 for a postdoctoral training in the fields of neuroscience and stem cell biology. He has been a Professor at the School of Medicine, University of California in San Diego since late 2008. His research focuses on modeling neurological diseases, such as Autism Spectrum Disorders, using human induced pluripotent stem cells. His lab has developed several techniques to culture human neurons and glia for basic research and drug-screening platforms. He has received several awards, including the prestigious NIH Director’s New Innovator Award, NARSAD, Emerald Foundation Young Investigator Award, Surugadai Award from Tokyo University, Rock Star of Innovation from CONNECT, NIH EUREKA Award among others.
Zhaolan (Joe) Zhou, Ph.D.
Dr. Zhou is an Associate Professor of Genetics at the University of Pennsylvania Perelman School of Medicine, and Director of the Preclinical Models Core at the Intellectual and Developmental Disabilities Research Center (IDDRC) at the Children’s Hospital of Philadelphia. After receiving a B.S. in bioengineering from Nankai University and a Ph.D. in molecular and cellular biology from Harvard University, he carried out his postdoctoral training in neuroscience at Harvard Medical School and Children’s Hospital of Boston. His research focuses on understanding the pathophysiology of genetic disorders that impact brain development and function. These include Rett Syndrome and CDKL5 Deficiency with monogenic causes, Asperger Syndrome with complex genetics, and Major Depressive Disorder with environmental insults. As a recipient of the NIH BRAINS award and a Pew Scholar in biomedical sciences, Dr. Zhou has led a research team that developed the first lines of mouse models recapitulating human genetic mutations in Rett Syndrome and CDKL5 Deficiency, and engineered genetically modified mice to interrogate the genetic basis of Asperger Syndrome and environmental stress-related epigenetics in the brain. Through a combination of genetic, genomic, physiological, and behavioral approaches, the Zhou laboratory aims to gain pathophysiological insights into genetic disorders of interest, identify robust and quantitative biomarkers, and uncover new therapeutic avenues to improve treatment for patients.
Dr. Bernhard Suter, MD
Dr. Suter underwent post graduate training at Harvard in Developmental Neuroscience at Massachusetts General Hospital. He trained in Child Neurology at Texas Children’s Hospital and Baylor College of Medicine. Currently, he is the Director of the MECP2 Duplication Clinic and the Medical Co-Director of the Blue Bird Circle Rett Center at Texas Children’s Hospital. This Rett Center specializes in the treatment of children with Rett syndrome and related disorders, including CDKL5 syndrome.
He is board certified in Child Neurology and Epilepsy. He has both basic and clinical translational science experience and has published a number of publications pertaining to epilepsy as well as Rett related disorders. He has a special interest in gait analysis and movement disorders.
He is a scholar of the NIH Rare Diseases Clinical Research Network and is also a co-investigator of the NIH sponsored Rett and related disorders Natural History Study, which includes CDKL5.
Rebecca J. Schultz PhD, RN, CPNP
Dr. Schultz received her PhD in Nursing Science from Texas Woman’s University in Houston, Texas and her Master of Science in Nursing from the University of Texas, Graduate School of Biomedical Sciences in Galveston, Texas. She is an Assistant Professor of Pediatric Neurology and Developmental Medicine at Baylor College of Medicine and Pediatric Nurse Practitioner in the Comprehensive Epilepsy Program, Blue Bird Circle Clinic for Pediatric Neurology at Texas Children’s Hospital and Associate Professor at Texas Woman’s University, College of Nursing.
She is a nurse scientist and pediatric nurse practitioner with 30 years’ experience caring for youth with neurological conditions and their families. She was the principal nurse practitioner in the Blue Bird Circle Rett Center from 1988 until 2001 then joined the Comprehensive Epilepsy Program at Texas Children’s Hospital where she has directed the ketogenic diet program for the past 17 years and been a principle investigator or co-investigator in 25 research studies. Her research interests include the psycho-social aspects of epilepsy in youth, efficacy and side effects of the ketogenic diet, and the transition of adolescents with epilepsy from pediatric to adult care. She serves as the medical advisor for the Epilepsy Foundation Houston HRSA grant Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy.
Dr. Schultz’s awards include the 2017 American Epilepsy Society Dreifuss Lecturer, the 2017 Nurse Practitioner Excellence in Child Neurology Nurses award, the Excellence in Nursing Practice Award from Sigma Theta Tau in 2014, Texas Nurses Association Outstanding Nurse of 2008 Award, and the Kiffen Penry Top Scholar award in 2003.
Dr. Schultz is actively involved in the American Epilepsy Society where she served as chair of Professionals in Epilepsy Care and served on the Scientific Program Committee and the Student & Resident Education Subcommittee. She is an active member of the National Epilepsy Foundation of America, Professional Advisory Board, and the Child Neurology Foundation, Transition Project Advisory Committee. Additionally, she serves on the American Academy of Neurology Epilepsy Quality Measure Development Work Group, and the Board of Directors of the Association of Child Neurology Nurses.
Walter Erwin Kaufmann, M.D.
Dr. Kaufmann is an active medical staff member and professor at Boston Children’s Hospital and Harvard Medical School, where he is head of the Rett Syndrome Clinic. He has a vast collection of publications covering a wide range of neurological conditions including Rett Syndrome, Fragile X and autism. Dr. Kaufmann brings with him more than 30 years of experience, research and education to IFCR.
Dr. Sumit Parikh, M.D.
Dr. Parikh currently holds several positions at the Cleveland Clinic including: co-director of Neurogenetics, metabolic and mitochondrial disease clinic, co-director of Cyclic Vomiting Syndrome Clinic, staff physician of Cleveland Clinic Neuroscience and Pediatric Institutes, Staff Physician at Fairview Hospital, and eCleveland Clinic Consultant. Dr. Parikh holds many board certifications including certifications in pediatrics, child neurology, medical genetics and metabolic disease. He has contributed to a number of publications. Dr. Parikh has had the opportunity to diagnose many of our CDKL5 children.