Produced in collaboration with Dravet Syndrome Foundation and NORD
Support for this patient education program was provided by Zogenix, Inc.
“Dravet Syndrome and Caregiving: Your Voices Heard and Answered” is a new live, interactive, virtual education program created for caregivers of children or adults with Dravet Syndrome.
This program will feature a panel of experts as they discuss and address the following topics:
- Services and resources that can help address challenges in providing care for children and adults with Dravet Syndrome
- Promoting awareness of Dravet Syndrome, from early childhood throughout adulthood while addressing symptoms and burden of disease
- Harnessing positive coping mechanisms after your child is diagnosed with Dravet Syndrome
- Recognizing the impact of Dravet Syndrome diagnosis with immediate family and relatives
- Evaluate treatment options for Dravet syndrome with your child’s health care provider
- Collaborate with health care teams to ensure smooth transition from pediatric to adult health care
- Adopt strategies to address caregiver burden
Do you have any specific questions you would like the expert panel to discuss like during the program? Submit them to the Q-Board today:
Elaine Wirrell MD, FRCPC
Professor of Child and Adolescent Neurology. Consultant and Chief of Pediatric Epilepsy Mayo Clinic, Rochester, MN
Professor of Neurology, Harvard Medical School
Wirrell Bio: Elaine C. Wirrell, MD, FRCPC, is professor of child and adolescent neurology, and consultant and chief of Pediatric Epilepsy at Mayo Clinic in Rochester, Minnesota. Dr Wirrell’s research focuses on epidemiology and the treatment of pediatric epilepsy, as well as comorbidities. Her research has led to 173 peer-reviewed articles and 19 book chapters. Dr Wirrell is chair of the AES Pediatric Content Committee and of the ICNA Research Committee, and co-chair of the ILAE Nosology and Definitions Committee Member: Pediatric Psychiatry Committee. She is a member of the Fellow of the Royal College of Physicians & Surgeons of Canada, the Minnesota Board of Medical Practice, and the American Epilepsy Society. Dr Wirrell received her medical degree from University of British Columbia in Vancouver.
Kathy lives in a suburb of Chicago with her husband Bob and their 2 daughters, Cameron and Stacy. Stacy, now age 22, had her first seizure in January 1999 and was diagnosed with Dravet Syndrome in August of 2006. Like so many families, Stacy has endured hundreds of seizures, too many trips to the Emergency room, lots of failed epilepsy medicines and many other challenges due to her repeated seizures. Stacy’s determination and strength through all of this, has motivated us search for a cure for epilepsy.
Our family attended our first Dravet Conference in August 2006, when the Dravet Foundation at that time was referred to as the Idea League. Since then, we’ve attended many other conferences. However, we will never forget our experience attending our first Dravet Conference as we felt such comfort in meeting so many families struggling with the same things we were, but also overwhelmed by the stories of every family and the difficulties they each endured.
Because I have lived this journey for over 20 years, I like to share my experiences with others. I know having a child with Dravet can be very lonely, isolating and overwhelming (especially now with COVID) and want to help in any way I can.
Patricia Dean BSN, MSN
Clinical Coordinator of the Comprehensive Epilepsy Program at Miami Children's Hospital
Patricia Dean received her BSN from Downstate Medical Center and her MSN from the University of Miami. Ms. Dean has been involved in every aspect of nursing care of the pediatric epilepsy patient. She is presently the Clinical Coordinator of the Comprehensive Epilepsy Program at Miami Children's Hospital.
She has worked extensively with the Epilepsy Foundation at both the national and state level. She served on the Board of Directors of the National Epilepsy Foundation and the Professional Advisory Board. She is the Immediate Past President of the Epilepsy Foundation of Florida. She has received awards for her service from both the local chapter and national office.
She has authored numerous journal articles and book chapters on seizures and epilepsy and is a sought after speaker on the topic. She is well known in the epilepsy community for her work with children and families.
Veronica Hood PhD
Research Coordinator, Dravet Syndrome Foundation
Dr. Veronica Hood began her position as research coordinator for the Dravet Syndrome Foundation in 2020 and currently resides in Johnson City, Tennessee. Veronica has an MS in Biology from East Tennessee State University and a PhD in Cell, Stem Cell, and Developmental Biology from the University of Colorado. She spent 10 years in laboratory settings researching how small changes in genetic and molecular regulation contribute to complex neurological diseases. In addition to her scientific training, Veronica has lived the caregiver perspective, as her son Gabriel faced complex neurodevelopmental challenges that began with seizures during infancy. Despite endless testing, a diagnosis remained elusive, and at the age of 8, Gabriel passed away. These experiences fueled Veronica’s passion to advance medical research and shaped her desire to support other families facing similar challenges. She applies her scientific knowledge and her understanding of the caregiver experience to support the Dravet community by facilitating research activities and acting as a liaison between researchers, medical professionals, and families.