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2020 SCN8A Clinician, Researcher, and Family Gathering

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Speakers

John Schreiber

MD, Director of Epilepsy Genetics and Director of EEG​, Children's National

Hillary Savoie

PhD, Founder/Director TCSF

Jeremy Thompson

PhD Candidate, University of Virginia

Elena Gardella

PhD, Senior Consultant/Lead Clinician, Danish Epilepsy Center, Filadelfia

Katrine Johannesen

MD, Department of Epilepsy Genetics and Personalized Treatment, Danish Epilepsy Center, Denmark

Ian Wenker

PhD, ​Research Associate, University of Virginia School of Medicine

Gabi Belfort

MD, PhD, Senior Medical Director, Praxis Precision Medicines

Rachel Callander

Rare Disease Advocate and Mother

Laurie Bailey

Senior Manager Medical Affairs, Zogenix

carla schad

Director Medical Affairs, Zogenix

Marcio Souza

President and CEO, Praxis Precision Medicines

Dietrich Haubenberger

MD, Medical Director, Neurocrine Biosciences

Manoj Patel

​PhD, Associate Professor of Anesthesiology, University of Virginia

Carlos Vanoye

PhD, Research Associate Professor of Pharmacology, Northwestern University

Miriam Meisler

PhD, Professor of Human Genetics, University of Michigan

Eric Wengert

Graduate Student, University of Virginia

The event is over

The Cute Syndrome Foundation raises awareness, funds research, and supports families of people with SCN8A mutations.

Booths

Welcome Message

Event welcome by Hillary Savoie.

Meet Milo

Milo is truly a superhero.

Meet McKenzie

Let's keep McKenzie's smile bright!

Meet Max

Max has the best brother, ever.

Meet Shirley

Shirley loves playtime with her sister and is a fighter!

Meet Cam

Let's run at fighting SCN8A like Cam does!

Meet Hazel

Hazel has all kinds of days—the good, the bad, and the amazing!

Heather and Tate

Tate's Story

Sex and Strain Differences in the Natural History of the SCN8A-N1768D Mouse Model

Michael Hammer and Erfan Bahramnejad

SCN8A 101

Eric Wengert

Meet McKinlee, Ellie, Addyson, Tate, and Heidi

We are so proud of all of our SCN8A warriors! #StrongerTogether

Meet Hannah, Varya, Blake, and Oliver

We are so proud of all of our SCN8A warriors! #StrongerTogether

Meet Bruno, Thomas, Lily, Wyatt, Emma, and Stijn

We are so proud of all of our SCN8A warriors! #StrongerTogether

Meet Billy

Billy misses everyone... and wants us to know that he's really cute.

Meet Nico

Nico is 7 and said his first word this year!

Meet Stella (and her big brother Lincoln!)

Stella and Lincoln want a medicine that takes away her seizures, but leaves her giggles!

Meet Addy

Addy is finding her voice!

Meet Mia

Mia just wants to be happy!

Meet Emma

Emma wants you to know that time is ticking down and we need better medication options ASAP.

Meet William

William is an SCN8A Hero!

Meet Liam

Liam is a warrior!

Meet Sadie

Sadie is one year seizure free!

Meet Otto

Otto was failed by 14+ seizure medications before the age of two.

Meet Henry

Henry loves to play!

Milo's Story

Gaelle, Juan, and Milo

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