Welcome to Day 2!

Family Education Day Event Agenda

All activities in Watertable Ballroom unless otherwise specified

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

9:30a:     Family Photo
Meet outside 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