Rallying

2018  PRELIMINARY AGENDA


WEDNESDAY, Sept. 26, 2018

10:20 a.m.
Welcome
Steve DeWitte — Connecticut Advocates for Parkinson’s
Dr. Soania Mathur — Parkinson’s research advocate
Israel Robledo — Parkinson’s research advocate

10:25 a.m.
For 185 years, the non-motor aspects of Parkinson’s went unrecognized — clinicians missed them. What are we missing now?
Dr. Katie Kopil — Michael J. Fox Foundation for Parkinson’s Research

10:45 a.m.
Impact of non-motor symptoms from a clinical perspective: Personalized medicine, phenotypes and moving forward?
Professor K. Ray Chaudhuri — King’s College London

11:15 a.m.
What has the U-Motif dataset revealed? Feedback from the stratification meeting in London — can we use the non-motor symptoms to classify Parkinson’s?
Dr. Angie Kehagia and Dr. Joy Duffen — The Cure Parkinson’s Trust

11:40 a.m.
Discussion: Does this reflect PwP’s experience?

12:10 p.m.
Lunch

12:30 p.m.
Your questions answered
Over lunch question-and-answer session with Dr. Patrik Brundin and colleagues

1:30 p.m.
2018 survey findings presented — Fox Insight data (to be confirmed)
Leah Mursaleen — The Cure Parkinson’s Trust
Dr. Soania Mathur — Parkinson’s research advocate

2:00 p.m.
Parkinson’s Patient Phenomena Survey findings: Impact on PwP and their families of motor, autonomic, cognitive, sleep and personality/behavioral symptoms
Dan and Ginny DeWitt  — Parkinson’s research advocates

3:00 p.m.
Break

3:20 p.m.
Focus groups

4:20 p.m.
Feedback from focus groups

5:00 p.m.
Day closes


THURSDAY, SEPT. 27, 2018

10:00 a.m.
Sleep: Evaluating sleep to understand the impact on other non-motor aspects of Parkinson’s
Feedback from three advocates who have tested devices to measure sleep
Chaired by Dr. Peter Schmidt (to be confirmed)

11:00 a.m.
Break

11:15 a.m.
Discussion: insights, accuracy and relevance of the devices

11:55 a.m.
Concluding comments
Steve DeWitte — Connecticut Advocates for Parkinson’s
Dr. Soania Mathur — Parkinson’s research advocate
Israel Robledo — Parkinson’s research advocate

12:00 p.m.
Lunch

12:15 p.m.
Your questions answered
Over lunch question-and-answer session with Dr. Patrik Brundin and colleagues

1:15 p.m.
Presentation of the Tom Isaacs Award
NOTE: This session will take place in Tomatis Auditorium during the Grand Challenges in Parkinson’s Disease symposium

1:30 p.m.
Feedback presentation to Grand Challenges in Parkinson’s Disease
Steve DeWitte, Dan DeWitt, Israel Robledo, Soania Mathur, Leah Mursaleen and David Jones
NOTE: This session will take place in Tomatis Auditorium during the Grand Challenges in Parkinson’s Disease symposium