Burden of Disease from a Caregiver's Perspective
Produced in collaboration with Dravet Syndrome Foundation and NORD
Support for this patient education program was provided by Zogenix, Inc.
Dravet syndrome (DS) is a severe form of epilepsy that can cause frequent and prolonged seizures, developmental delay, speech impairment, ataxia, hypotonia, sleep disturbances, and other health problems. Join our on demand educational session to hear a dialogue between medical specialists and families facing DS. Together the panelists will present to both families managing DS and clinicians treating DS, on topics including:
- Differences between the stages of DS
- Developmental and behavioral changes that can accompany DS
- The impact of a diagnosis on the whole family, and supportive resources for caregivers
Kelly Knupp, MD, MSCS
University of Colorado, Anschutz Medical Campus
Kelly Knupp, MD, is an associate professor of Pediatrics and Neurology at the University of Colorado. She practices at Children’s Hospital Colorado in Aurora, where she is an associate research director of Neuroscience Institute and director of the Dravet Program. Her interests are epileptic encephalopathies, including Dravet Syndrome and infantile spasms. Dr Knupp was a founding member of the Pediatric Epilepsy Research Consortium, which focuses on developing collaborative research nationally for children with epileptic encephalopathies. She serves on the medical advisory boards of the Epilepsy Foundation of Colorado, Roundup River Ranch, and the Dravet Syndrome Foundation. She received her medical degree from the University of New Mexico School of Medicine in Albuquerque.
Nicole Villas, MEd
Dravet Syndrome Foundation
Nicole Villas, board president and scientific director of the Dravet Syndrome Foundation, earned her bachelor’s degree in chemistry and master’s degree in science education from the University of Minnesota. She worked in research and development at the University of Minnesota and for a small wet chemistry company for several years before teaching chemistry and physics. Nicole has been using her scientific background to educate, empower, and support parents of children with Dravet syndrome since shortly after her youngest son’s diagnosis in 2008. Nicole also volunteers with the Epilepsy Foundation of Colorado in Greenwood Village, Colorado.
Dagmar Amtmann, PhD
University of Washington, Seattle Department of Rehabilitation Medicine
Dagmar Amtmann, PhD, is a research associate professor at the University of Washington, Department of Rehabilitation Medicine in Seattle. Over the past 20 years, she has led or participated in numerous studies of health and quality of life of people with disabilities or chronic conditions. Dr Amtmann has interviewed parents of children with the Dravet Syndrome and other severe epilepsies living both in the United States and internationally about the stressors and benefits of taking care of children with epilepsy, and about the quality of life of caregivers of children with severe epilepsy.
Meghan Wilson, BS
Parent of Child with Dravet Syndrome
Meghan Wilson lives in Denver, Colorado with her husband and two children, Adele and Vivian. She has an undergraduate degree in biological sciences from the University of Pittsburgh in Pittsburgh, Pennsylvania and is a certified Project Management Professional (PMP). Meghan has been working in the field of clinical research for 20 years. In 2012, Meghan’s daughter, Vivian, was diagnosed with Dravet Syndrome, which prompted her to connect with the Dravet Syndrome Foundation (DSF). She was previously a DSF Parent Ambassador and currently leads a monthly support group for parents and caregivers of children with Dravet Syndrome.