2022 CCM Patient Conference Agenda

As of October 18th (Subject to Change)

Day 1: November 18th

7:00-8:30   Breakfast with Scientists & Registration        Presidents I

Keynote      Presidents II, III & IV
8:30            Dr. Amy Akers – Welcome
8:40            Dr. Issam Awad – Opening Remarks/Keynote Introduction
8:50            Dr. Doug Marchuk – Keynote Address

9:45            Break and move to Ambassador Allen/McGee/Page

Patient Breakout         Ambassador Room
10:10           Dr. Connie Lee, Alliance to Cure – Welcome & Housekeeping
10:15           Duke Center of Excellence Plaque Ceremony
10:20           Dr. David Hasan  – CCM, Surgery & Clinical Decision-Making
11:00           Dr. Kelly Flemming & Dr. Rustam Al-Shahi Salman, U of Edinburgh – CCM Neurology: A Discussion Between Experts
11:45           Dr. Connie Lee – CCM Genetics Q&A

12:10               Lunch with scientists              Presidents I

Patient Breakout         Ambassador Room
1:20             Dr. Glenn Morrison, Recursion – Sycamore Trial Update
2:00             Dr. Delaney Fisher, U of Virginia – Focused Ultrasound
2:40             Juan Gutierrez, Neurelis – NRL-1049 Update
3:10             Holly Blei – The Alliance To Cure Biobank

3:30     Break with Scientists

4:00             Dr. Issam Awad – The Future of CCM Clinical Trials

5:00             End

Dinner             We will send out a survey to find out who may be interested in joining together for dinner at the Washington Duke Bull Durham Bar. We have found that attendees are often too fatigued to participate in a formal dinner, so we will reserve tables instead. Dinner is not included in registration.

Day 2               November 19th

7:00-8:30         Breakfast         Ambassador Duke

Participants will be split into groups on Day 2. The groups will switch after 75 minutes.  One group will visit the Duke lab while the other group participates in conversation groups, a nutrition discussion, and has an opportunity to enroll in research. A shuttle will run between the hotel and the lab.

Patient Meeting          Ambassador Allen/McGee/Page

8:30           Welcome and Housekeeping

8:45           Group 1 leaves for the lab; Group 2 Conversation Groups
9:30           Group 2 – Nutrition discussion with Darla Clayton

10:00         Groups 1 and 2 – Break (together)

10:15         Group 2 leaves for the lab; Group 1 Conversation Groups
11:00         Group 1 – Clinical Trials discussion with Connie Lee

11:30          Eloquent, the documentary (together)
12:30          Documentary discussion
12:50          Closing comments

1:00            End of meeting