October 17, 2020

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

9:00am-10:00am EST Sign into our virtual venue and take a look around
10:00am-10:15am EST Welcome Mary Anne Meskis
Executive Director, 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 Moderated by Veronica Hood, PhD
Research Coordinator, DSF
12:00pm-1:00pm Lunch Break / Exhibit Hall, DSF Resource Center, and DSF Lounges 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 Regional Breakout Group 1 TBA
2:45pm-3:15pm EST Regional Breakout Group 2 TBA
3:15pm-3:45pm EST Regional Breakout Group 3 TBA
3:45pm-4:00pm EST Meeting Wrap Up Mary Anne Meskis
Executive Director, DSF
4:00pm-5:00pm EST Exhibit Hall, DSF Resource Center, and DSF Lounges are open.
***The breakout session for siblings will take place from 10:30am-12:00pm, in tandem with the workshop sessions***

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.

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.

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.

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