Skip to content

2020 SCN8A Clinician, Researcher, and Family Gathering

Calendar icon to
User icon 228 people attended

Proudly Supported By

Schedule

· Sessions
Welcome - Families
2020-12-04T11:00:00Z 2020-12-04T11:15:00Z America/New_York Welcome+-+Families https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
SCN8A 101
Eric Wengert
2020-12-04T11:15:00Z 2020-12-04T12:00:00Z America/New_York SCN8A+101 https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
SCN8A Research and Drug Development Landscape Panel
John Schreiber Manoj Patel Marcio Souza
2020-12-04T12:00:00Z 2020-12-04T13:00:00Z America/New_York SCN8A+Research+and+Drug+Development+Landscape+Panel https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Expo
BREAK
1 hour break. Take a look at upcoming sessions and visit the "expo" area.
2020-12-04T13:00:00Z 2020-12-04T14:00:00Z America/New_York BREAK https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Welcome - Professionals and Families
Hillary Savoie
2020-12-04T14:00:00Z 2020-12-04T14:10:00Z America/New_York Welcome+-+Professionals+and+Families https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Clinician Roundtable
SCN8A Clinical Landscape: Whats up and coming in clinical research.
Dietrich Haubenberger Elena Gardella Gabi Belfort John Schreiber Katrine Johannesen Manoj Patel
2020-12-04T14:10:00Z 2020-12-04T15:10:00Z America/New_York Clinician+Roundtable https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Expo
BREAK
20 min break. Take a look at upcoming sessions and visit the "expo" area.
2020-12-04T15:10:00Z 2020-12-04T15:30:00Z America/New_York BREAK https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Research Roundtable
SCN8A Leading Researchers Discuss
Carlos Vanoye Ian Wenker Jeremy Thompson John Schreiber Manoj Patel Miriam Meisler
2020-12-04T15:30:00Z 2020-12-04T16:30:00Z America/New_York Research+Roundtable https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
SCN8A Angels
2020-12-04T16:30:00Z 2020-12-04T16:35:00Z America/New_York SCN8A+Angels https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Family Talks
Hear from some of our SCN8A parents.
2020-12-04T16:35:00Z 2020-12-04T16:50:00Z America/New_York Family+Talks https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
The Cute Syndrome Foundation Update
Early Survey Results, Social and Emotional Programing, Clinical Trial Readiness, International SCN8A Efforts.
Hillary Savoie
2020-12-04T16:50:00Z 2020-12-04T17:00:00Z America/New_York The+Cute+Syndrome+Foundation+Update https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
BREAK
30 min break. Take a look at upcoming sessions and visit the "expo" area.
2020-12-04T17:00:00Z 2020-12-04T17:30:00Z America/New_York BREAK https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Cocktail Hour
Join us whenever you can for casual conversation!
2020-12-04T17:30:00Z 2020-12-04T18:45:00Z America/New_York Cocktail+Hour https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Awesomeness Form Workshop
Rachel Callander joins us again for an in-depth workshop focused on how we talk about our children.
Rachel Callander
2020-12-05T10:00:00Z 2020-12-05T12:00:00Z America/New_York Awesomeness+Form+Workshop https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Expo
BREAK
1 hour break. Take a look at upcoming sessions and visit the "expo" area.
2020-12-05T12:00:00Z 2020-12-05T13:00:00Z America/New_York BREAK https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Siblings Panel
A discussion with adult SCN8A siblings about their experiences.
carla schad Laurie Bailey
2020-12-05T13:00:00Z 2020-12-05T14:00:00Z America/New_York Siblings+Panel https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Moms Discussion Group
2020-12-05T14:00:00Z 2020-12-05T15:00:00Z America/New_York Moms+Discussion+Group https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
Dads Discussion Group
2020-12-05T14:00:00Z 2020-12-05T15:00:00Z America/New_York Dads+Discussion+Group https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)
· Sessions
The Cute Syndrome Foundation
What do you want from your foundation?
2020-12-05T15:00:00Z 2020-12-05T16:00:00Z America/New_York The+Cute+Syndrome+Foundation+ https%3A%2F%2Fhopin.to%2Fevents%2F2020-scn8a-clinician-researcher-and-family-gathering Hosted virtually on Hopin (link in the description)

Speakers

carla schad

Director Medical Affairs, Zogenix

Carlos Vanoye

PhD, Research Associate Professor of Pharmacology, Northwestern University

Dietrich Haubenberger

MD, Medical Director, Neurocrine Biosciences

Elena Gardella

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

Eric Wengert

Graduate Student, University of Virginia

Gabi Belfort

MD, PhD, Senior Medical Director, Praxis Precision Medicines

Hillary Savoie

PhD, Founder/Director TCSF

Ian Wenker

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

Jeremy Thompson

PhD Candidate, University of Virginia

John Schreiber

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

Katrine Johannesen

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

Laurie Bailey

Senior Manager Medical Affairs, Zogenix

Manoj Patel

​PhD, Associate Professor of Anesthesiology, University of Virginia

Marcio Souza

President and CEO, Praxis Precision Medicines

Miriam Meisler

PhD, Professor of Human Genetics, University of Michigan

Rachel Callander

Rare Disease Advocate and Mother

The event is over

Hosted by

The Cute Syndrome Foundation

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

Event/Tech Support

Click here for troubleshooting tips.