6th PAME Conference

Wednesday, November 30, 2022

2:00 pm Registration opens
2:30 pm Welcome session for families and advocates

  1. Welcome remarks
    • Tom Stanton, Danny Did Foundation and Alison Kukla, Epilepsy Foundation
  2. Navigating Traumatic Grief
    • Gina Frieden, Vanderbilt University and Gardiner Lapham, Band Foundation
  3. Group discussion
    • Led by Maureen Slotnick, Danny Did Foundation Ambassador and Alison Kukla, Epilepsy Foundation
  4. Panel discussion: Turning grief into action
    • Libby Boyce, The Cameron Boyce Foundation
    • Tanisha Tyler-Graves, When the Trumpet Sounds
    • Nora Wong, The NORSE Institute
    • moderated by Tom Stanton, Danny Did Foundation
5:30 pm Adjourn
6:00 pm Welcome reception in the Market Place area of the lobby (open to all conference attendees)

Thursday, December 1, 2022

7:30 am Registration opens, Continental breakfast available
8:00 – 8:30 am Welcome
8:30-10:00 am Global Epilepsy Mortality – The Public Health Burden and International Initiatives
10:00-10:30 am Break
10:30 am-12:00 pm Blurred distinctions between SIDS, SUDC and SUDEP
12:00-1:00 pm Lunch
1:00-2:30 pm Breakout 1

Counting Better: Why epilepsy mortality surveillance matters, where are we now and where should we go?

Breakout 2

The Science of Devices for Prevention of SUDEP

2:30-3:00 pm Break
3:00pm-4:30 pm Breakout 3

Limitations and alternatives to pharmacological approaches for intervention and prevention of SUDEP

Breakout 4

Preventing SUDEP and Epilepsy Mortality Toolkit; From Development to Evaluation

4:30-5:00 pm Closing session
5:00-6:30 pm Reception and poster session