8:00-9:30a: One-on-One SCN8A Registry Meetings with Michael Hammer, PhD, University of Arizona or Katrine M Johannesen, MD Danish Epilepsy Centre Conference Room and Watertable Ballroom
10:00-11:00a: Cute Syndrome Foundation Updates for Families
11:00-11:45a:Difficult Discussions: Impact of Severe Childhood Epilepsy on Siblings—Findings from the Sibling Voices Survey, Carla Schad, MD, and Laurie Bailey, Zogenix
11:45-12:15p:Difficult Discussions: Caregiver Stress, Tracy Salazar, Ph.D. Lennox-Gastaut Syndrome Foundation
12:00-1:30p:Simultaneous Meeting for Siblings ONLY with Carla Schad, MD, and Laurie Bailey, Zogenix
12:15-1:30p:Working Lunch and Discussion of Current SCN8A Research with Manoj Patel, PhD and Industry Partners Xenon and Praxis
1:30-2:00p:Adventures in AAC: Presuming Competence in Communication
2:00-4:00p:“McPosium” Model Patient-Centered Research Conversation
4:30-5:30p: Closed Meeting: Parent Advisory Panel Conference Room 6:30p:Meet for Family Outing Lobby