Thursday, June 23

Join us for early packet pick-up, welcome sessions, and dinner. We are also excited to offer updates from our industry partners. Be sure to join us to learn about treatments in the pipeline and how to participate in upcoming clinical trials. All sessions are held at The Worthington Renaissance.

TimeSessionPresenter
2:00pm-2:30pmEarly Registration Packet Pickup
2:30pm-2:45pmWelcome & What to ExpectMary Anne Meskis –
DSF Executive Director
2:45pm-3:15pmScience PrimerVeronica Hood, PhD –
DSF Scientific Director
3:15pm-3:35pmIndustry Update: Stoke TherapeuticsKimberly Parkerson, MD, PhD – Sr Medical Director, Stoke Therapeutics
3:35pm-3:55pmIndustry Update: Longboard Pharmaceuticals
3:55pm-4:15pmIndustry Update: Epygenix Therapeutics
4:15pm-4:25pmBreak
4:25pm-4:45pmIndustry Update: Takeda
4:45pm-5:05pmIndustry Update: Encoded Therapeutics
5:05pm-5:25pmIndustry Update: CAMP4Ann Barbier, MD, PhD –
Chief Medical Officer, CAMP4
5:25pm-5:45pmIndustry Update: UCB – Staccato AlprazolamRobert Roebling, MD –
Senior Medical Director, UCB
5:45pm-6:00pmMeet our Board of Directors

Meet our Parent Ambassadors

Kate Hintz – DSF Board President &

Erin Reoyo – Family Network Support Group Liaison

6:00pm-7:30pmMeet & Greet for Families
Dinner will be served
7:30pm-8:00pmJoin us for movie snacks and a screening of The Balancing Act Presents: Behind the Mystery of Dravet Syndrome, featuring Dr. Linda Laux and the Raia Family.

Friday, June 24: TRACK A

Asterisked session titles qualify for CME and CNE credits for healthcare professionals. All registered attendees are welcome at all sessions. All sessions are held at The Worthington Renaissance.

TimeSessionPresenter
8:00am-8:45amBreakfast & Registration
Be sure to stop by and meet our Exhibitors!
8:45am-9:00amWelcomeScott Perry, MD – Cook Children’s Hospital
9:00am-9:30am*Dravet 101 for Providers and ParentsKelly Knupp, MD – Children’s Hospital Colorado
9:35am-10:05am*Treatment of Dravet Syndrome   Fabio Nascimento, MD – Massachusetts General Hospital
10:10am-10:40am*Seizure Action Plans and Rescue Medications Elaine Wirrell, MD – Mayo Clinic
10:40am-10:55amBreak
Be sure to stop by and meet our Exhibitors!
10:55am-11:25am*The Role of Epilepsy Surgery in Children with Dravet SyndromeDave Shahani, MD – Cook Childen’s Medical Center
11:30am-12:00pm*Genetics of Dravet SyndromeIngo Helbig, MD – Children’s Hospital of Philadelphia
12:00pm-1:00pmLunch
1:00pm-1:30pm*Sleep Disturbances in Dravet SyndromeHilary Pearson, MD – Cook Children’s Medical Center
1:35pm-2:05pm*SUDEP and Dravet Syndrome Linda Laux, MD – Lurie Children’s Hospital
2:10pm-2:40pm*Behavioral Issues in Dravet SyndromeM. Zelime Elibol, MD – Cook Children’s Medical Center
2:45pm-3:15pm *Cardiac Issues and Dravet SyndromeRonald J Kanter, MD – Nicklaus Children’s Hospital
3:15pm-3:35pmBreak
Be sure to stop by and meet our Exhibitors!
3:35pm-4:05pm  *Natural History Studies in Dravet SyndromeAndreas Brunklaus, MD – Royal Hospital for Children, Glasgow
4:10pm-4:40pm*Dravet Syndrome in AdulthoodDanielle Andrade, MD, MSc, FRCPC – University of Toronto
4:40pm-5:00pmClosing Remarks
6:00pm-9:00pmDinner & Socializing

Friday, June 24: TRACK B

Asterisked session titles qualify for CME and CNE credits for healthcare professionals. All registered attendees are welcome at all sessions. All sessions are held at The Worthington Renaissance.

TimeSessionPresenter
8:00am-8:45amBreakfast & Registration
Be sure to stop by and meet our Exhibitors!
8:45am-9:00amWelcomeScott Perry, MD – Cook Children’s Hospital
9:00am-9:45am*Development of an Anti-Seizure Drug Screening Platform for Dravet Syndrome at the NINDS contract site for the Epilepsy Therapy Screening ProgramCameron S. Metcalf, PhD – University of Utah
9:50am-10:35am*Reversibility in Dravet Syndrome: A Support to Gene Therapy StudiesGaia Colasante, MD – Università Vita-Salute San Raffaele
10:40am-10:55amBreak
Be sure to stop by and meet our Exhibitors!
10:55am-11:25am
Zebrafish Models for Rare Genetic Epilepsies and Drug Screening
Scott Baraban, PhD – UCSF
11:30am-12:00pm*Genetics of Dravet SyndromeIngo Helbig, MD – Children’s Hospital of Philadelphia
12:00pm-1:00pmLunch
1:00pm-1:30pm*TANGO (Targeted Augmentation of Nuclear Gene Output) in the Treatment of Dravet SyndromeLori Isom, PhD – University of Michigan
1:35pm-2:05pm*Neuropeptides as a Treatment for SCN1A-Derived EpilepsyAndrew Escayg, PhD – Emory University
2:10pm-2:40pm*Microglia: Novel Targets in Seizure DisordersUkpong Eyo, PhD – University of Virginia
2:45pm-3:15pm*Neuroimaging Correlates of GABA Metabolism in Dravet SyndromeChristos Papadelis, PhD – Cook Children’s Health Care System
3:15pm-3:35pmBreak
Be sure to stop by and meet our Exhibitors!
3:35pm-4:05pm*Natural History Studies in Dravet SyndromeAndreas Brunklaus, MD – Royal Hospital for Children, Glasgow
4:10pm-4:40pm*Dravet Syndrome in AdulthoodDanielle Andrade, MD, MSc, FRCPC – University of Toronto
4:40pm-5:00pmClosing Remarks
6:00pm-9:00pmDinner & Socializing

Saturday, June 25: TRACK A

Sessions are on topics of concern to caregivers and the day to day care of their loved ones. All registered attendees are welcome at all sessions. All sessions are held at The Worthington Renaissance.

TimeSessionPresenter
8:00am-9:00amWings of Hope Butterfly Release & Breakfast
Be sure to stop by and meet our Exhibitors!
Lori O’Driscoll – Ciara’s Light Foundation
9:00am-9:15amMindfulness SessionAmanda Stansfield – Health Coach & Dravet Parent
9:20am-9:50amSeizure Monitors & Equipment and How to Get FundingJamie Cohen, CPA – DSF Program Manager
9:55am-10:25amMedication ConsiderationsAdrian Turner, PharmD – Cook Children’s Medical Center
10:30am-11:00amThe Future of Disease Modifying TherapiesKimberly D Goodspeed, MD – Children’s Health
11:05am-12:10amSharing Your Story to Expand Your Help BaseErin Reoyo – DSF Family Network Support Group Liaison & Panel
12:15pm-1:15pmLunch
1:15pm-4:00pmNew to Diagnosis WorkshopModerated by Veronica Hood, PhD – DSF Scientific Director
View the Workshop Agenda here
4:00pm-4:15pmBreak
Be sure to stop by and meet our Exhibitors!
4:15pm-4:45pmCaring for the Caregiver & FamilyAmanda Stansfield – Health Coach & Dravet Parent
4:45pm-5:00pmConference Wrap Up
6:00pm-9:00pmDinner & Socializing

Saturday, June 25: TRACK B

Sessions are on topics of concern to caregivers and the day to day care of their loved ones. All registered attendees are welcome at all sessions. All sessions are held at The Worthington Renaissance.

TimeSessionPresenter
8:00am-9:00amWings of Hope Butterfly Release & Breakfast
Be sure to stop by and meet our Exhibitors!
Lori O’Driscoll – Ciara’s Light Foundation
9:00am-9:15amMindfulness SessionAmanda Stansfield – Health Coach & Dravet Parent
9:20am-9:50amCaring for Adults with Epilepsy and Dravet SyndromeSeth M Keller, MD- Adult Neurologist, Neurology Associates of South Jersey
9:55am-10:25amWhat Do We Mean When We Say Transition?Kathy Dodd – Parent of an Adult with Dravet syndrome
10:30am-11:00amCoping with Prolonged and Complicated GriefChristy Ardis, LCSW & Lisa Patterson, LCSW – Cook Children’s Medical Center
11:05am-11:35amUnderstanding Palliative CareChristy Ardis, LCSW & Lisa Patterson, LCSW – Cook Children’s Medical Center
11:40am-12:10pmResources for Transfer of Care from Parent to Sibling or Other ProviderLaurie Bailey – Zogenix
12:15pm-1:15pmLunch
1:15pm-4:00pmLong-Term Adult Care WorkshopModerated by Mary Anne Meskis – DSF Executive Director
View the Workshop Agenda here
4:00pm-4:15pmBreak
Be sure to stop by and meet our Exhibitors!
4:15pm-4:45pmCaring for the Caregiver & FamilyAmanda Stansfield – Health Coach & Dravet Parent
4:45pm-5:00pmConference Wrap Up
6:00pm-9:00pmDinner & Socializing