Agenda & Speakers

Speakers and presentation times are subject to change.

Thursday, July 19 Speaker Topic
4:00pm-4:45pm Early Registration Packet Pickup
4:45pm-5:00pm Amy Brooks-Kayal, MD Welcome
5:00pm-6:00pm Ian Miller, MD Dravet 101
5:00pm-6:00pm Danielle Andrade, MD MSC FRCPC Dravet in Adults
6:00pm-8:00pm Welcome Reception & Registration Packet Pickup
Friday, July 20 – CME Track Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:00am Kelly Knupp, MD & Nicole Villas Welcome
9:00am-9:30am M. Scott Perry, MD Iceberg, Straight Ahead! Introduction to Dravet Syndrome
9:30am-10:00am Eric Segal, MD Second Line Treatments
10:00am-10:30am Kelly Knupp, MD Co-morbities in Dravet Syndrome
10:30am-10:45am Break
10:45am-11:15am Brian Morrow, Esq Legal Ambiguity of Artisanal Medical Marijuana Use
11:15am-11:45am Charuta Joshi, MD MBBS Medical Marijuana in Treating Dravet Syndrome
11:45am-12:15pm Elizabeth Donner, MD SUDEP in Dravet Syndrome
12:15pm-12:30pm Clinical Management Panel Q&A
12:30pm-1:30pm Lunch
1:30pm-2:00pm Kourtney Santucci, MD Partnering with your Pediatrician
2:00pm-2:30pm Scott Demarest, MD Epilepsy Disorders
2:30pm-3:00pm Dennis Lal, PhD SCN1A Data Science – Challenges and Opportunities
3:00pm-3:30pm Anne Stratton, MD Gait & Dravet Syndrome
3:30pm-3:45pm Break
3:45pm-4:15pm Russ Saneto, DO PHD Keto & Dravet Syndrome
4:15pm-4:45pm Amy E. Sass, MD Puberty & Dravet Syndrome
4:45pm-5:15pm Ginenne Sullivan, BSN RN CPN Pediatric Transition to Adult Care in Dravet Syndrome
5:15pm-5:45pm Craig Press, MD PHD Non-Convulsive Status Epilepticus in Dravet Syndrome
5:45pm-6:00pm Clinical Management Panel Q&A
6:30pm-9:00pm Social Event at Hyatt
Friday, July 20 – Family Track Speaker Topic
10:45am-11:30am Laurie Bailey Sibling Survey Update & Sibling Panel
11:30am-12:30pm Julie Hagy-Hancock, MS Developing Your Child’s IEP: Rights and Roadblocks
12:30pm-1:30pm Lunch
1:30pm-2:00pm Nicole Villas, M Ed DSF Research Summary and Q&A
2:00pm-2:30pm Ashley Wood, LCSW CEAP Life Support – Daily Tips & Tools for Families
2:30pm-3:30pm Jennifer Tischer Parents Supporting Parents – Questions in the Community
3:30pm-3:45pm Break
3:45pm-4:15pm Lori O’Driscoll Hope in Dravet Syndrome
4:15pm-4:45pm Greta Wilkening, PHD, PSYD The Role of Neuropsychological Assessment in Caring for Children with Dravet Syndrome
6:30pm-9:00pm Family Event at Hyatt
Saturday, July 21 – CME Track Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:15am Jack Parent, MD Update on Human Pluripotent Stem Cell Research in Epilepsy
9:15am-9:45am Lori Isom, PHD Discovering Mechanisms of Dravet Syndrome
9:45am-10:15am Scott Baraban, PHD A Zebrafish Model of Dravet Syndrome
10:15am-10:45am Manisha Patel, PHD Disruption of glucose metabolism in zebrafish model of Dravet Syndrome
10:45am-11:00am Break
11:00am-11:45am Katie Angione, MS CGC Genetics 101
11:00am-12:00pm Betty Lehman Disability Planning (in Yale/Princeton Rooms)
11:45am-12:30pm Timothy Benke, MD PHD Where’s My Gene Therapy?
12:30pm-12:45pm Basic Science Panel Q&A
12:45pm-1:45pm Lunch
1:45pm-2:15pm Michelle Welborn, PharmD Introduction to Pharmacology
2:15pm-2:45pm Sooky Koh, MD PHD Role of Neuroinflammation in Dravet Syndrome
2:45pm-3:15pm Dennis Dlugos, MD MSCE Clinical Trial Overview
3:15pm-3:30pm Break
3:30pm-4:00pm Anne Berg, PHD Natural History of Dravet Syndrome: Identifying Goals, Setting Priorities, and Building Partnerships
4:00pm-4:30pm Linda Laux, MD Dravet Syndrome Delphi Project
4:30pm-4:45pm Trials Panel Q&A
4:45pm-5:45pm Kelly Knupp, MD & Nicole Villas Patient Centered Outcome Research & the Patient Voice
6:30pm-9:00pm Family Event at Hyatt
Saturday, July 21 – Family Track Speaker Topic
8:45am-10:45am Brad & Karen Thompson Marriage & Relationships with a Special Needs Child (offered at two times)
10:45am-12:45pm Brad & Karen Thompson Marriage & Relationships with a Special Needs Child (offered at two times)
12:45am-1:45pm Lunch
1:45am-5:45pm  Brad & Karen Thompson Individual counseling sessions available
Sunday, July 22 – Family Sessions Speaker Topic
8:00am-9:00am Wings of Hope Butterfly Release
9:00am-10:00am Breakfast
10:00am-12:00pm Caregiver Concerns & Patient Centered Research