Skip to content

2020 SCN8A Clinician, Researcher, and Family Gathering

to
84 people attending

Annual Clinician, Researcher, and Family Gathering

The Cute Syndrome Foundation's Annual SCN8A Clinician, Researcher, and Family Gathering has been held in conjunction with the American Epilepsy Society meeting since 2015. Last year we hosted well over 200 clinicians, researchers, family members, patients, and industry professionals during our evening event, which focused on the newest advances in drug development, SCN8A research, expert clinical care, as well as heard stories of life with SCN8A. We also held family-focused meetings during the day on Friday and Saturday, covering topics such as SCN8A 101, SCN8A sibling support, and a Q&A session on drug development with industry professionals. 

These annual Gatherings have always created a venue to (1) share current SCN8A knowledge among researchers; (2) inspire collaborations to improve expert care; (3) educate families on research and drug discovery advancements in SCN8A; and (4) provide an opportunity for caregivers to share their experiences living with SCN8A in order to help bring real-life experiences to bench research and drug development. Through these Gatherings, we have built the expectation among our families that they will be kept up to date on advancements and have access to a group of clinical, research, and industry partners who eagerly engage our caregiver community as fellow experts. 2020 will be no exception! 

At this Gathering, you see families meeting in real life for the first time after years of creating deep personal bonds over the internet. You also see clinicians and researchers exchanging data among themselves and with families, making the kinds of connections that come from face-to-face interactions. As a result, our SCN8A families are empowered with vital information about their children’s health; clinicians learn how to better serve their SCN8A patients, and researchers establish collaborations inspired by the SCN8A patients and their families.

Due to COVID-19, for our 6th annual gathering, we are transitioning to an entirely virtual event. Although we will miss the in-person connections, we hope to be able to connect to an even wider audience and share this valuable information with more clinicians, researchers, and families than ever before.

​The Annual Gathering helps us all be #SCN8AStrong.

Conference in a Box

Please add your mailing address when registering to receive a custom event box filled with informational materials and The Cute Syndrome Foundation swag (one box per family/industry professional). Register by October 23rd to receive a box (while supplies last, international shipping tbd).

Questions? Contact [email protected]

The Cute Syndrome Foundation is a 100% volunteer-run organization. Click here to support us.

Proudly Supported By

Schedule

· Stage
Welcome - Families
· Stage
SCN8A 101
· Sessions
SCN8A Research and Drug Development Landscape Panel
· Expo
Poster Sessions and Booths Open
Visit booths at your own pace.
· Stage
Welcome - Professionals and Families
· Stage
Keynote
SCN8A Clinical Landscape: Whats up and coming in clinical research.
· Sessions
Roundtable
SCN8A Leading Researchers Discuss
· Stage
The Cute Syndrome Foundation Update
Early Survey Results, Social and Emotional Programing, Clinical Trial Readiness, International SCN8A Efforts.
· Stage
SCN8A Angels
· Stage
Family Talks
· Expo
Poster Sessions and Booths Open
Visit booths at your own pace.
· Sessions
Cocktail Hour
· Sessions
Awesomeness Form Workshop
· Sessions
Break-out Sessions
· Expo
Poster Sessions and Booths Open
Visit booths at your own pace.
· Sessions
Siblings Panel
A discussion with adult SCN8A siblings about their experiences.
· Sessions
General Mental Health Session
· Sessions
The Cute Syndrome Foundation
What do you want from your foundation?

Tickets

Free
Already registered? Log In to access the event

Tell us about yourself:

Hosted by

The Cute Syndrome Foundation

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

Share on

Booths

Parent Support Booth

Find info about behavior challenges, IEP School Planning, ACC, Survey Tutorial, and more!

gmail.com

gmail.com