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

2022 DSF Conference

Join us for DSF’s Family & Professional Conference on June 23-25, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas.

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

37

Speakers

12

Sponsors

63

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

Takeda

Featured Supporter

Epygenix

Longboard Pharmaceuticals

UCB

Gold Supporter

Encoded

Silver Supporter

Xenon

Dravet Activity Room Sponsor

Ciara's Light

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

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

Kelly Knupp, MD

Kelly Knupp, MD

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

Dave Shahani, MD

Dave Shahani, MD

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

Elaine Wirrell, MD

Elaine Wirrell, MD

Director, Pediatric Epilepsy; Professor, Neurology Mayo Clinic

Hilary Pearson, MD

Hilary Pearson, MD

Medical Director, Sleep Laboratory Cook Children's Medical Center

Ukpong Eyo, PhD

Ukpong Eyo, PhD

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

Gaia Colasante, PhD

Gaia Colasante, PhD

Project Leader, Stem Cell and Neurogenesis Unit San Raffaele Hospital

Christos Papadelis, PhD

Christos Papadelis, PhD

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

Linda Laux, MD

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

Scott C Baraban, PhD

Scott C Baraban, PhD

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

Lori Isom, PhD

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

Seth Keller, MD

Seth Keller, MD

Neurologist Neurology Associates of South Jersey

Cameron S Metcalf, PhD

Cameron S Metcalf, PhD

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

Veronica Hood, PhD

Veronica Hood, PhD

Scientific Director Dravet Syndrome Foundation

Mary Anne Meskis

Mary Anne Meskis

Executive Director Dravet Syndrome Foundation

Kate Hintz

President, Board of Directors Dravet Syndrome Foundation

Erin Reoyo

Family Network Support Group Liaison Dravet Syndrome Foundation

Robert Roebling, MD

Robert Roebling, MD

Medical Director UCB

Fábio A. Nascimento, MD

Fábio A. Nascimento, MD

Epilepsy Clinical Fellow Massachusetts General Hospital- Harvard Medical School

Ingo Helbig, MD

Ingo Helbig, MD

Ronald J Kanter, MD

Ronald J Kanter, MD

M Zelime Elibol, MD

M Zelime Elibol, MD

Andreas Brunklaus, MD

Andreas Brunklaus, MD

Andrew Escayg, PhD

Andrew Escayg, PhD

Adrian Turner, PharmD

Adrian Turner, PharmD

Clinical Pharmacist Cook Children's Medical Center

Kimberly Goodspeed, MD

Kimberly Goodspeed, MD

Kathy Dodd

Kathy Dodd

Lisa Patterson, LCSW

Lisa Patterson, LCSW

Clinical Therapist and Social Worker Cook Children's Medical Center

Laurie Bailey

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

Lori O'Driscoll

Lori O'Driscoll

Ann Barbier, MD, PhD

Ann Barbier, MD, PhD

Chief Medical Officer CAMP4

Christy Ardis, LCSW

Christy Ardis, LCSW

Palliative Clinical Therapist Cook Children's Medical Center

Kimberly Parkerson, MD, PhD

Kimberly Parkerson, MD, PhD

Senior Medical Director Stoke Therapeutics

Jamie Cohen, CPA

Jamie Cohen, CPA

Program Manager Dravet Syndrome Foundation

Jenny Gallo

Special Events Director Dravet Syndrome Foundation

Amanda Stansfield

Amanda Stansfield

Agenda

Categories:

2:00 PM - 2:30 PM

Early Registration Packet Pickup

Brazos Ballroom

2:30 PM - 2:45 PM

Welcome & What to Expect

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

3:55 PM - 4:15 PM

Industry Update: Epygenix Therapeutics

Brazos Ballroom

4:15 PM - 4:25 PM

Break

4:25 PM - 4:45 PM

Industry Update: Takeda

Brazos Ballroom

4:45 PM - 5:05 PM

Industry Update: Encoded Therapeutics

Brazos Ballroom

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

7:30 PM - 8:00 PM

The Balancing Act Presents: Behind the Mystery of Dravet Syndrome

Brazos Ballroom

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