The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Day 2 Agenda

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
Past Annual Reports

Past PCDH19 Efforts

​Privacy Policy

The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
​
Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved
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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop