Raising Awareness: A Guide to Signs and Symptoms in the Early Years of Life
Produced in collaboration with Dravet Syndrome Foundation and NORD
Support for this patient education program was provided by Zogenix, Inc.
Dravet Syndrome is a rare, catastrophic, lifelong form of epilepsy that affects 1 in every 15,700 individuals and begins in the first year of life with frequent and/or prolonged seizures. This 6-part video education series explores the impact Dravet Syndrome can have on patients and their families while covering topics like diagnosis, treatment, family needs, support and more.
During the first 3 modules, Dr. Elizabeth Thiele, Professor of Neurology at Harvard Medical School and Director of the Pediatric Epilepsy Program at MGH will lead a discussion that addresses:
- 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
In modules 4,5 and 6, the expert speaker panel will continue their discussion to help caregivers:
- 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
Click a Module below to register and attend this on-demand program.
Diagnosis Received: What’s Next? – Being Prepared to Provide Support
Family Matters: Demands on the Immediate Family and Relatives
Effective Therapy: What Are My Child’s Options Now And in The Future?
Dravet in Transition: What Happens When A Child is Ready for Adult Care?
Managing Caregiver Burden: Balancing Needs and Accessing Support Resources
Elizabeth Thiele, MD, PhD
Director, Carol and James Herscot Center for Tuberous Sclerosis Complex, Massachusetts General Hospital
Professor of Neurology, Harvard Medical School
Dr. Elizabeth A. Thiele is a neurologist and epileptologist at Massachusetts General Hospital. She received her medical training at Johns Hopkins University School of Medicine in Baltimore, Maryland, and completed an internship and residency in pediatrics at the Johns Hopkins Hospital. She completed a second residency in child neurology and a postdoctoral research fellowship in neurology at Children's Hospital in Boston.
Dr. Thiele organized and established the Herscot Center for Tuberous Sclerosis Complex, a multidisciplinary comprehensive clinical program for TSC, as well as a ketogenic diet clinic to treat and manage patients with epilepsy. She is also the Director of the Pediatric Epilepsy Service at Mass General and a Professor in Neurology at Harvard Medical School.
Dr. Thiele's research and clinical interests include the role of diet in epilepsy treatment, genotype-phenotype correlation in TSC, the role of epilepsy surgery in management of intractable epilepsy, outcomes following infantile spasms, and neuropsychological profiles in relationship to tuber number and location in TSC.
Patricia Bruno, RN, BSN
Pediatric Epilepsy Program, Massachusetts General Hospital
Abby Hemani lives in Newton, Massachusetts with her husband, Micah, her three children, Jonah, Norah and Nate, and their dog Harlow. She is a practicing attorney who works for a large financial services firm. In 2010, Abby’s daughter, Norah, was diagnosed with Dravet Syndrome. Following Norah’s diagnosis, Abby became involved with the Dravet Syndrome Foundation. She joined the Board of DSF in 2012, and served as President of the Board for several years, before taking on a new role as Trustee Emeritus in 2017.
Mary Anne Meskis
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She has owned and managed several small businesses, with an emphasis on project management, in the private sector for over 25 years. She resides in Illinois with her husband and the youngest of her three children, Elliot, who has Dravet syndrome. In addition to her role at DSF, she currently serves on several epilepsy working groups and advisory panels.
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.
Barbara Swoyer is a volunteer, advocate, blogger and written contributor in the community of families caring for children with special needs and medical complexity. She and her husband are the parents of two adult children, the youngest of whom has a diagnosis of Dravet Syndrome and Secondary Mitochondrial Dysfunction. Barbara is active with the Dravet Syndrome Foundation as a member of the Caregivers of Adults with Dravet Syndrome Advisory Group. She also has a particular interest in palliative care and health care transition issues, and is a founding parent advisory board member and frequent contributor for the Courageous Parents Network.