Agenda & Speakers

Speakers and presentation times are subject to change.

Thurs, June 18 – INTRO SESSIONS Speaker Topic
4:00pm-4:45pm Registration
4:45pm-5:00pm Nicole Villas Welcome
5:00pm-6:00pm Danielle Andrade, MD, MSC, FRCPC Adult Patients & Dravet Syndrome
5:00pm-6:00pm Ian Miller, MD Pediatric Patients & Dravet Syndrome
6:00pm-8:00pm Welcome Reception & Registration
Fri, June 19 –  TRACK 1 Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:00am M. Scott Perry, MD Welcome
9:00am-9:30am Kelly Knupp, MD Dravet Syndrome:  The Basics
9:30am-10:00am Anne Berg, PhD Natural History of Dravet: What We Know, What We Still Need to Find Out
10:00am-10:05am Transition
10:05am-10:35am Russell Saneto, DO, PhD What’s New in Dravet Treatment?
10:35am-10:55am Break
10:55am-11:25am Elaine Wirrell, MD Status Epilepticus: Management and Prevention
11:25am-11:30am Transition
11:30am-12:00pm Eric Segal, MD Non-Pharmacologic Treatments in Dravet Syndrome
12:00pm-1:00pm Lunch
1:00pm-1:30pm Rima Nabbout, MD, PhD Beyond the Seizures: Impact of Dravet
1:30pm-1:35pm Transition
1:35pm-2:05pm Ian Miller, MD Cardiac Risks in Dravet Syndrome
2:05pm-2:10pm Transition
2:10pm-2:40pm TBA TBA
2:40pm-2:45pm Transition
2:45pm-3:15pm Hilary Pearson, MD Sleep in Dravet: Strategies for Zzzz’s
3:15pm-3:35pm Break
3:35pm-4:05pm Linda Laux, MD Seizure Detection Devices
4:05pm-4:10pm Transition
4:10pm-4:40pm Anup Patel, MD
Cynthia Keator, MD
Debate: CBD vs CBD+
4:40pm-5:00pm Nicole Villas Closing Remarks
6:00pm-10:00pm Dinner, followed by Family Movie Night (sponsored by Greenwich Biosciences) at Renaissance Worthington
Fri, June 19 – TRACK 2 Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:00am M. Scott Perry, MD Welcome
9:00am-9:30am Kelly Knupp, MD Dravet Syndrome:  The Basics
9:30am-10:00am Anne Berg, PhD Natural History of Dravet: What We Know, What We Still Need to Find Out
10:00am-10:05am Transition
10:05am-10:35am Jack Parent, MD Top 5 Basic Science Advances in Dravet Syndrome
10:35am-10:55am Break
10:55am-11:25am Ann Poduri, MD, MPH Predicting Outcome: Genotype/Phenotype Correlations in Dravet Syndrome
11:25am-11:30am Transition
11:30am-12:00pm Lori Isom, PhD TANGO Therapy
12:00pm-1:00pm Lunch
1:00pm-1:30pm Ingo Helbig, MD Gene Therapy 101
1:30pm-1:35pm Transition
1:35pm-2:05pm Scott Baraban, PhD Therapeutic Targets in Dravet Syndrome
2:05pm-2:10pm Transition
2:10pm-2:40pm Zachary Grinspan, MD, MS Big Data for Big Questions
2:40pm-2:45pm Transition
2:45pm-3:15pm Dennis Dlugos, MD, MSCE Designing Better Clinical Trials: Measuring More Than Seizures
3:15pm-3:35pm Break
3:35pm-4:05pm Danielle Andrade, MD, MSC, FRCPC Dravet in Adulthood: What Do We Know?
4:05pm-4:10pm Transition
4:10pm-4:40pm M. Scott Perry, MD

Hamid Kadiwala, MD

Practical Advice: Starting an Adult Transition Clinic for Dravet
4:40pm-5:00pm M. Scott Perry, MD Closing Remarks
6:00pm-10:00pm Dinner, followed by Family Movie Night (sponsored by Greenwich Biosciences) at Renaissance Worthington
Sat, June 20 – TRACK 1 Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:00am Nicole Villas Welcome
9:00am-10:00am TBA Finding Services for the Patient
10:00am-10:30am Sarah Mullins, MD The REAL ketogenic diet: Tales from 5478 keto meals
10:30am-11:00am Nicole Villas Research Summary and Q&A
11:00am-11:30am Meghan Wilson The Patient & Family Role in Research and Clinical Trials
11:30am-12:00pm TBA Rescue Meds & Emergency Action Plans
12:00pm-1:00pm Lunch
1:00pm-2:00pm Kathy Dodd Creating a Transition Plan
2:00pm-2:30pm TBA Behaviors – Practical Advice from Parents
2:30pm-3:00pm Michelle Welborn, PharmD TBA
3:00pm-4:00pm Jennifer Tischer Life After Diagnosis
4:00pm-4:30pm Lori O’Driscoll TBA
4:30pm-5:00pm Nicole Villas Patient Centered Outcomes Research
6:00pm-10:00pm Dinner, followed by Family Dance Party (sponsored by Zogenix) at Renaissance Worthington
Sat, June 20 – TRACK 2 Speaker Topic
8:00am-8:45am Registration & Breakfast
8:45am-9:00am Jennifer Tischer Welcome
9:00am-11:00am Brad & Karen Thompson Marriage & Relationships with a Special Needs Child (same session offered twice)
11:00am-11:30am Private Counseling Session
11:30am-12:00pm Private Counseling Session
12:00pm-1:00pm Lunch
1:00pm-3:00pm Brad & Karen Thompson Marriage & Relationships with a Special Needs Child (same session offered twice)
3:00pm-3:30pm Private Counseling Session
3:30pm-4:00pm Private Counseling Session
4:00pm-4:30pm Private Counseling Session
4:30pm-5:00pm Private Counseling Session
6:00pm-10:00pm Dinner, followed by Family Dance Party (sponsored by Zogenix) at Renaissance Worthington