You can still visit our virtual conference center through December at https://dayofdravet.live/ to watch presentations, stop by our virtual exhibit hall, and access resources.

Presentations and slides from each of our sessions are also available below.

SESSION MATERIALS
Welcome
Mary Anne Meskis – Executive Director, DSF
Veronica Hood, PhD – Research Coordinator, DSF
Presentation
Overview of Dravet Syndrome
M. Scott Perry, MD – Cook Children’s Medical Center
Presentation

View Slides

The Genetics of Dravet Syndrome
Douglas M. Smith, MD – Minnesota Epilepsy Group
Presentation

View Slides

New Treatments for Dravet Syndrome
Elaine Wirrell, MD – Mayo Clinic
Presentation

View Slides

Q & A Presentation
Research Update
Veronica Hood, PhD – Research Coordinator, DSF
Presentation

View Slides

Caregiver Stress in the Time of COVID (followed by a Q&A)
Jamie Zuckerman, PsyD
Presentation

View Slides

Sleep, Cognitive and Other Non-seizure Disorders in Dravet Syndrome
Orrin Devinsky, MD – NYU Langone
Presentation

View Slides

Intro to unspoken symphony, Meeting Wrap Up & Prize Drawings
Mary Anne Meskis – Executive Director, DSF
Veronica Hood, PhD – Research Coordinator, DSF
Presentation

Dr. Scott Perry (@TheNotoriousEEG) is the Medical Director of Neurology and the Genetic Epilepsy Clinic, as well as co-Director of the Jane and John Justin Neurosciences Center at Cook Children’s Medical Center, Fort Worth, TX. He completed his MD at the University of Mississippi School of Medicine and general pediatrics and child neurology training at Emory University. He completed a Clinical Neurophysiology fellowship at Miami Children’s Hospital before joining Cook Children’s in 2009. His clinical and research interests include the use of epilepsy surgery for the treatment of intractable childhood epilepsy and the evaluation and treatment of genetic epilepsy syndromes.

Dr. Douglas Smith received his bachelor of science at The College of New Jersey and his medical degree from New Jersey Medical School. He completed his pediatric neurology and pediatric epilepsy training at the Children’s Hospital of Philadelphia. He has been with the Minnesota Epilepsy Group for the last 4 years, where he started a clinic dedicated to the diagnosis and treatment of rare genetic causes of epilepsy, including Dravet syndrome. He brought the drug trial for fenfluramine for Dravet syndrome to the Minnesota Epilepsy Group and served as the Principal Investigator for the study site. He will present on what we know and what we don’t know about the genetics of Dravet syndrome, and to help us understand the possible genetic treatments in the future.

Dr. Elaine Wirrell is the director of pediatric epilepsy and professor of neurology at the Mayo Clinic in Rochester, Minnesota. She completed medical school at the University of British Columbia and her pediatric neurology training at Dalhousie University in Halifax, Nova Scotia. She is the co-chair of the Nosology and Status Epilepticus Task Force and a member of the Psychiatric Issues in Pediatric Epilepsy Task Force of the International League Against Epilepsy. She is also the chair the Pediatric Content Committee at the American Epilepsy Society and a member of the Medical Advisory Board for the Dravet Syndrome Foundation. Dr. Wirrell’s main research interests are in early onset, medically intractable epilepsies, and epileptic encephalopathies.

Dr. Veronica Hood joined DSF in June 2020. She 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 2007, she had a son, Gabriel, who faced severe developmental challenges. Gabriel presented with initial seizure activity within his first two months of life, and his medical needs quickly became quite complex. Despite endless testing, a diagnosis remained elusive, and at the age of 8, Gabriel passed away. These experiences fueled her passion to advance medical research and shaped her desire to support other families facing similar challenges.

Dr. Orrin Devinsky is professor of neurology, neurosurgery, and psychiatry at the New York University School of Medicine. His epilepsy research includes sudden unexpected death in epilepsy (SUDEP), cannabinoids, phenome-genome correlations, autism, neural markers and imaging, therapeutic electrical stimulation, quality-of-life, cognitive and behavioral issues, and surgical therapy. He is the principal investigator for the North American SUDEP Registry and on the Executive Committee of the SUDEP Institute. He has chaired several committees of the Epilepsy Foundation and the American Epilepsy Society and has served as a Board member of both organizations. He founded Finding A Cure for Epilepsy and Seizures (FACES) and co-founded the Epilepsy Therapy Project and epilepsy.com. Outside interests include behavioral neurology (intracranial and functional imagining studies to understand language and sensory processing), evolutionary biology and history of neuroscience.

Every year attendees tell us that one of their favorite parts of the workshop is the opportunity to meet industry representatives and ask questions. While we won’t be able to meet in person this year, we will have a virtual exhibit hall.

As a registered attendee, you will be able to stop by our event sponsors exhibit booths online and ask questions, before, during, and even a few weeks after the event. We know it’s not the same as meeting and asking questions in person, but we think you’ll find the information and access to industry partners just as valuable.

TIME SESSION
8:30am-10:00am EST Sign into our virtual venue and take a look around!
8:30am-9:30am EST Technical Check Session – an informal session designed to make sure that your computer or device works with the virtual conference platform. We are available to answer questions and help with technical issues.
10:00am-10:15am EST Welcome
Mary Anne Meskis – Executive Director, DSF
Veronica Hood, PhD – Research Coordinator, DSF
10:15am-10:45am EST Overview of Dravet Syndrome
M. Scott Perry, MD – Cook Children’s Medical Center
10:45am-11:15am EST The Genetics of Dravet Syndrome
Douglas M. Smith, MD – Minnesota Epilepsy Group
11:15am-11:45am EST New Treatments for Dravet Syndrome
Elaine Wirrell, MD – Mayo Clinic
11:45am-12:00pm EST Q & A
12:00pm-1:00pm Lunch Break
Exhibit Hall, DSF Resource Center, and Lounge open
1:00pm-1:30pm EST Research Update
Veronica Hood, PhD – Research Coordinator, DSF
1:30pm-2:15pm EST Caregiver Stress in the Time of COVID (followed by a Q&A)
Jamie Zuckerman, PsyD
2:15pm-2:45pm EST Sleep, Cognitive and Other Non-seizure Disorders in Dravet Syndrome
Session sponsored by Zogenix
Orrin Devinsky, MD – NYU Langone
2:45pm-3:45pm EST Moderated Regional Breakout Groups
Session sponsored by Greenwich Biosciences
3:45pm-3:55pm EST Introduction to unspoken symphony
3:55pm-4:00pm EST Meeting Wrap Up & Prize Drawings
Mary Anne Meskis – Executive Director, DSF
Veronica Hood, PhD – Research Coordinator, DSF
4:00pm-5:00pm EST Exhibit Hall, DSF Resource Center, and Lounge are open.
***The breakout session for siblings will take place from 10:30am-12:00pm, in tandem with the workshop sessions***

REGISTRATION IS NOW CLOSED

You will receive log-in info for your child(ren) via email.

If you have not received your log-in info or have any questions, contact Mary Anne.

Day of Dravet Sibling Camp is a unique experience for siblings of children with Dravet to connect with each other, so we are disappointed we can’t meet in person this year.

We will be offering a fun breakaway session full of surprises during Day of Dravet for siblings whose parent is registered for the event. The session will take place in tandem with the workshop, from 10:30-12:00pm EST. Families who have registered will receive information on how to register your child(ren) for this session, or you can register at this link.

Registered siblings will be encouraged to have their free VIP Sibling Kit handy during the event. If you have not yet ordered your kit, you can learn more and order at this link.

Questions? Email Mary Anne.

Dravet Syndrome Foundation’s (DSF) Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome.

This year, our virtual event takes place on Saturday, October 17th. Learn from professionals in the morning, then join us for regional breakout sessions in the afternoon. We will also be offering a fun breakout session for siblings since they can’t meet in person this year for Super Sibling Camp.

The first 400 families located in the U.S to register are guaranteed an event tote bag and materials, which will be shipped prior to the event. Attendees also have an opportunity to win DSF swag during the event!

There is no fee to participate, but pre-registration is required.
Registration closes October 14, 2020.

You will receive information via email the week of the event on how to sign into the event.

A technology test will be offered from 9:30-10:30am the day of the event for participants who would like to test their computer before connecting to the workshop.

Questions? Contact maryanne@dravetfoundation.org

Registration is now closed.

Registered attendees will receive a email before the event with personalized log-in information to join the live event. If you did not receive your email, please contact Mary Anne.

Sessions will be recorded and archived.

Thank you to our sponsors:

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