6th Annual Clinician, Researcher, and Family Gathering

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. We will be using the Hopin virtual conference platform to bring attendees keynote speakers, networking opportunities, expo booths, and breakout sessions. Hopin allows us to provide a full conference experience in an online environment. As an attendee, you’ll be able to move in and out of rooms just like an in-person event and enjoy the content and connections throughout. Click here to learn more about past gatherings.

Conference in a Box

Thanks to our generous sponsors, this year we are pleased to announce we will be sending attendees a custom event box filled with informational materials and The Cute Syndrome Foundation swag (one box per family/industry professional). Please register by October 23rd and add your mailing address to receive a box (while supplies last, international shipping tbd). Click the link above to register.

Agenda

All times are in EST

December 4th—Day 1

Families Only 11am-1pm
11:00-11:15am    ​Welcome     Shelley Frappier, The Cute Syndrome Foundation
11:15am-12:00pm    ​SCN8A 101     Eric Wengert, Graduate Student, University of Virginia
12:00-1:00pm    ​SCN8A Research and Drug Development Landscape Panel     Manoj Patel, PhD, John Schreiber, MD, Marcio Souza,  Hillary Savoie, PhD
1:00-2:00pm    ​Break    
Professionals and Families 2pm-close
​2:00-2:10pm    ​Welcome     Hillary Savoie, PhD, The Cute Syndrome Foundation
​2:10-3:10pm    ​Clinician Roundtable     SCN8A leading clinicians discuss
3:10-3:30pm    ​Break
​3:30-4:30pm    ​Researcher Roundtable     SCN8A leading researchers discuss
​4:30-4:35pm    ​SCN8A Angels     Karen Varner, The Cute Syndrome Foundation
​4:35-4:50pm    ​Family Talks     SCN8A Families share their perspective
​4:50-5:00pm    ​TCSF Updates/Closing     Hillary Savoie, PhD, The Cute Syndrome Foundation
5:00-5:30pm    ​Break
​5:30pm-7:30pm    ​Cocktail Hour    Join us whenever you can for casual conversation!

December 5th—Day 2

Families Only 10am-4pm
10:00-12:00pm    ​The Awesomeness Form     Rachel Callander, Rare Disease Advocate
12:00-1:00pm    ​Break
1:00-2:00pm    ​Sibling Panel     A discussion with adult SCN8A siblings about their experiences
2:00-3:00pm    ​​Breakout Sessions     Moms Discussion Group and Dads Discussion Group
​3:00-4:00pm    ​TCSF: What Do You Want From Your Foundation?    Shelley Frappier, The Cute Syndrome Foundation

Our Sponsors

Thank you to our generous sponsors for making this event possible!

Platinum Sponsor

Gold Sponsor

Bronze Sponsors