Understanding and Coping with the Risks of SUDEP
Date: Thursday, November 15, 2018
Time: Registration 9am, Conference 9:30am - 2:45pm
Location: School of Nursing, University of Rochester
Helen Wood Hall Auditorium 1W-304
Register here.
| 9:00 AM |
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Registration & Continental Breakfast
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| 9:30 AM |
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Welcome, CURE Foundation Goals, & Introduction to SUDEP
-Dr. Robert Holloway (URMC Prof. Neurology & Medicine, Chair of Neurology.)
-Jeff Sinsebox (President of Epilepsy-Pralid)
-Dr. David Auerbach (URMC Asst. Prof. Medicine-Aab CVRI, Pharm./Phys.)
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| 10:00 AM |
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SUDEP and its Relationship to Sleep and Post-Ictal Generalized EEG Suppression
-Dr. Lynn Liu (URMC Assoc. Prof. Neurology Strong Epilepsy Program)
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| 10:20 AM |
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SUDEP, Is it a Failure of Breathing?
-Dr. Joseph Modrak (URMC Assoc. Prof. Medicine – Pulmonary Critical Care)
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| 10:40 AM |
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Break
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| 10:55 AM |
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Genetic Advances in SUDEP Research
-Dr. Inna Hughes (URMC Asst. Prof. Neurology Strong Epilepsy Program)
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| 11:15 AM |
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Cardiac Electrical Disturbances as a Mechanism for SUDEP
-Dr. David Auerbach (URMC Asst. Prof. Medicine-Aab CVRI, Pharm./Phys.)
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| 11:35 AM |
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Seizures and SUDEP Monitors
-Mr. Steve McKeown (Advocate for SUDEP Research & Mechanical Engineer)
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| 11:55 AM |
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Catered Lunch |
| 12:45 PM |
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How and When to Speak to Patients and Families About the Risks of SUDEP and
Consenting for Tissue Collection to Advance SUDEP Research
-Dr. Erin Denney-Koelsch (URMC Associate Professor of Medicine & Pediatrics)
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| 1:05 PM |
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NYS Legislation for Reporting of SUDEP (Senate Bill S2422)
-Jeanne Donalty (Christopher Donalty-CURE Foundation)
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| 1:20 PM |
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Break
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| 1:30 PM |
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SUDEP Family Panel Discussion: Families’ Perspectives Regarding SUDEP
-Tammy Johannes (Founder, Tanya’s Trot)
-Beth & Steve McKeown
-Moderated by Jeanne Donalty (Christopher Donalty-CURE Foundation) |
| 2:30 PM |
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Final words and Advocacy for SUDEP Research and Prevention |
| 2:45 PM |
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Conclusion of the CME-accredited SUDEP workshop & Reception
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