About

Our 3-day conference is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals. CME & CNE credits are available for healthcare professionals for our sessions on Friday, June 24th.

3

Days

43

Speakers

16

Sponsors

64

Sessions

23. - 25. June, 2022 | The Worthington Renaissance Fort Worth Hotel, Main Street, Fort Worth, TX, USA

2022 DSF Conference

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Sponsors

Collaborative Supporter

Cook Children's Medical Center

Title Supporter

Jazz Pharmaceuticals

Zogenix, a wholly-owned subsidiary of UCB

Premier Supporter

Biocodex

Stoke Therapeutics

Takeda

Featured Supporter

Epygenix

Longboard Pharmaceuticals

UCB

Neurelis, Inc.

CAMP4

Gold Supporter

Encoded Therapeutics

Silver Supporter

Xenon

Consumers Cooperative Association

Labcorp MNG Laboratories

Dravet Activity Room Sponsor

Ciara's Light Foundation

Speakers

Danielle Andrade, MD, MsC, FRCPC

Danielle Andrade, MD, MsC, FRCPC

Professor of Medicine (Neurology); Director, Adult Genetic Epilepsy Program; Medical Director, Epilepsy Program University of Toronto

Christy Ardis, LCSW

Christy Ardis, LCSW

Palliative Clinical Therapist Cook Children's Medical Center

Laurie Bailey

Associate Director, Medical Affairs, Patient Advocacy Zogenix, now a part of UCB

Scott C Baraban, PhD

Scott C Baraban, PhD

Professor and William K. Bowes Jr. Endowed Chair, Neuroscience Research University of California San Francisco

Ann Barbier, MD, PhD

Ann Barbier, MD, PhD

Chief Medical Officer CAMP4 Therapeutics

Andreas Brunklaus, MD

Andreas Brunklaus, MD

Consultant Pediatric Neurologist Royal Hosptial for Children

Jamie Cohen, CPA

Jamie Cohen, CPA

Program Manager Dravet Syndrome Foundation

Gaia Colasante, PhD

Gaia Colasante, PhD

Project Leader, Stem Cell and Neurogenesis Unit San Raffaele Hospital

Kathy Dodd

Parent of a young adult with Dravet syndrome

M Zelime Elibol, MD

M Zelime Elibol, MD

Medical Director, Child Study Center Cook Children's Medical Center

Andrew Escayg, PhD

Andrew Escayg, PhD

Professor, Dept of Human Genetics Emory University

Ukpong Eyo, PhD

Ukpong Eyo, PhD

Assistant Professor, Department of Neuroscience and Center for Brain Immunology and Glia (BIG) University of Virginia

Jenny Gallo

Special Events Director Dravet Syndrome Foundation

Kimberly Goodspeed, MD

Kimberly Goodspeed, MD

Assistant Professor, Pediatrics, Neurology, and Psychiatry UT Southwestern Medical Center

Ingo Helbig, MD

Ingo Helbig, MD

Pediatic Neurologist; Director, Genomic Science Children's Hospital of Philadelphia

Kate Hintz

President, Board of Directors Dravet Syndrome Foundation

Veronica Hood, PhD

Veronica Hood, PhD

Scientific Director Dravet Syndrome Foundation

Lori Isom, PhD

Chair and Professor, Department of Pharmacology; Professor, Neurology and Molecular and Integrative Physiology University of Michigan Medical Center

Ronald J Kanter, MD

Ronald J Kanter, MD

Director, Electrophysiology Nicklaus Children's Hospital

Seth Keller, MD

Seth Keller, MD

Neurologist Neurology Associates of South Jersey

Kelly Knupp, MD

Kelly Knupp, MD

Associate Professor, Pediatrics and Neurology; Associate Research Director, Neuroscience Institute University of Colorado

Linda Laux, MD

Associate Professor, Pediatrics; Attending Physician, Neurology and Epilepsy Northwestern University; Ann & Robert H. Lurie Children's Hospital

Mary Anne Meskis

Mary Anne Meskis

Executive Director Dravet Syndrome Foundation

Cameron S Metcalf, PhD

Cameron S Metcalf, PhD

Associate Director, ETSP; Research Assistant Professor, Pharmacology and Toxicology University of Utah

Fábio A. Nascimento, MD

Fábio A. Nascimento, MD

Epilepsy Clinical Fellow Massachusetts General Hospital- Harvard Medical School

Lori O'Driscoll

Lori O'Driscoll

Founder & Executive Director Ciara's Light Foundation

Christos Papadelis, PhD

Christos Papadelis, PhD

Director of Research, Jane and John Justin Neurosciences Center Cook Children's Medical Center

Kimberly Parkerson, MD, PhD

Kimberly Parkerson, MD, PhD

Vice President, Head of Neurology Clinical Development Stoke Therapeutics

Lisa Patterson, LCSW

Lisa Patterson, LCSW

Clinical Therapist and Social Worker Cook Children's Medical Center

Hilary Pearson, MD

Hilary Pearson, MD

Medical Director, Sleep Laboratory Cook Children's Medical Center

M Scott Perry, MD

M Scott Perry, MD

Medical Director, Neurology; Co-Director, Jane and John Justin Neurosciences Center; Medical Director, Genetic Epilepsy Clinic Cook Children's Medical Center

Colleen Penwell

Colleen Penwell

Parent of a young adult with Dravet syndrome

Erin Reoyo

Family Network Support Group Liaison Dravet Syndrome Foundation

Robert Roebling, MD

Robert Roebling, MD

Medical Director UCB

Dave Shahani, MD

Dave Shahani, MD

Medical Director, Epilepsy Monitoring Unit Cook Children's Medical Center

Adrian Turner, PharmD

Adrian Turner, PharmD

Clinical Pharmacist Cook Children's Medical Center

Elaine Wirrell, MD

Elaine Wirrell, MD

Director, Pediatric Epilepsy; Professor, Neurology Mayo Clinic

Lorianne Masuoka, MD

Lorianne Masuoka, MD

Chief Medical Officer Epygenix

Yasir Khan MD, MPH

Yasir Khan MD, MPH

Associate Medical Director Takeda

Randall Kaye, MD

Randall Kaye, MD

Chief Medical Officer Longboard Pharmaceuticals

Salvador Rico, MD, PhD

Salvador Rico, MD, PhD

Chief Medical Officer Encoded Therapeutics

Clare Carey

Board Member & Parent of a young adult with Dravet syndrome Dravet Syndrome Foundation

Janice Stanley

Parent of a young adult with Dravet syndrome

Program

Categories:

2:00 PM - 2:30 PM

Early Registration Packet Pickup

Brazos Ballroom

2:30 PM - 2:45 PM

Welcome & Meet our Staff

Brazos Ballroom

Mary Anne Meskis

2:45 PM - 3:15 PM

Science Primer

Brazos Ballroom

Veronica Hood, PhD

3:15 PM - 3:35 PM

Industry Update: Stoke Therapeutics

Brazos Ballroom

Kimberly Parkerson, MD, PhD

3:35 PM - 3:55 PM

Industry Update: Longboard Pharmaceuticals

Brazos Ballroom

Randall Kaye, MD

3:55 PM - 4:15 PM

Industry Update: Epygenix Therapeutics

Brazos Ballroom

Lorianne Masuoka, MD

4:15 PM - 4:25 PM

Break

4:25 PM - 4:45 PM

Industry Update: Takeda

Brazos Ballroom

Yasir Khan MD, MPH

4:45 PM - 5:05 PM

Industry Update: Encoded Therapeutics

Brazos Ballroom

Salvador Rico, MD, PhD

5:05 PM - 5:25 PM

Industry Update: CAMP4

Brazos Ballroom

Ann Barbier, MD, PhD

5:25 PM - 5:45 PM

Industry Update: UCB- Staccato Alprazolam

Brazos Ballroom

Robert Roebling, MD

5:45 PM - 6:00 PM

Meet our Board of Directors and Parent Ambassadors

Brazos Ballroom

6:00 PM - 7:30 PM

Meet & Greet (Dinner will be served)

Brazos Ballroom

M Scott Perry, MD

7:30 PM - 9:00 PM

The Balancing Act Presents: Behind the Mystery of Dravet Syndrome

Brazos Ballroom

Event information

Partners

Jazz Pharmaceuticals

Jazz Pharmaceuticals

UCB

Neurelis, Inc.

Ciara's Light Foundation

Ciara's Light Foundation

Xenon

Zogenix, a wholly-owned subsidiary of UCB

Zogenix, a wholly-owned subsidiary of UCB

Encoded Therapeutics

Encoded Therapeutics

Longboard Pharmaceuticals

Longboard Pharmaceuticals

Epygenix

Takeda

Stoke Therapeutics

Stoke Therapeutics

Biocodex

Cook Children's Medical Center

Cook Children's Medical Center

Labcorp MNG Laboratories

Labcorp MNG Laboratories

Honey Grove Pharmacy

Honey Grove Pharmacy

Hannahtopia

Charlie Foundation

Charlie Foundation

Contact information

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