Date
Activity
8:00 a.m.
Registration and light refreshments
8:10 a.m.
Welcome and meeting goals:
Story Landis, PhD (Director, NINDS)
8:20 a.m.
Introduction of Participants
8:40 a.m.
Epilepsy Benchmarks: summary of 2010 advances
9:20 a.m.
NINDS/NIH Research Portfolio Presentation
9:40 a.m.
HHS Update on Epilepsy-related Activities
9:50 a.m.
DoD Research Portfolio Presentation
10:00 a.m.
American Epilepsy Society Research Portfolio Presentation
10:10 a.m.
Citizen's United for Research in Epilepsy Research Portfolio Presentation
10:20 a.m.
---- Break ----
10:35 a.m.
Tuberous Sclerosis Alliance Research Portfolio Presentation
10:45 a.m.
CDC Research Portfolio Presentation
10:55 a.m.
Epilepsy Foundation Research Portfolio Presentation
11:05 a.m.
Vision 20/20
11:15 a.m.
Epilepsy Therapy Project Research Portfolio Presentation
11:25 a.m.
FDA Research Portfolio Presentation
11:35 a.m.
Discussion: research needs and opportunities for organizational collaboration
12:15 p.m.
---- Lunch (on your own) ----
Afternoon Session: Focus on Sudden Unexpected Death in Epilepsy (SUDEP)
1:15 p.m.
Current state of SUDEP research (Sam Wiebe)
2:00 p.m.
Review goals established during the 2008 NINDS workshop and by the AES/EF SUDEP taskforce (Elson So)
2:15 p.m.
Ongoing and planned initiatives
Federal Agencies:
- NINDS (Brandy Fureman) 15 minutes
- CDC (David Thurman) 25 minutes
3:00 p.m.
---- Break ----
3:15 p.m.
Ongoing and planned initiatives, continued
Non-governmental:
- AES/EF task force activities (Elson So) 15 minutes
- CURE (Gardiner Lapham) 10 minutes
- ETP (Joyce Cramer) 10 minutes
3:50 p.m.
Discussion: assess progress and identify remaining needs and opportunities
4:30 p.m.
Wrap-up and Conclusions from the full day
Discussion: future ICARE activities and member interactions
5:00 p.m.
Adjourn