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.
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 23rdand add your mailing address to receive a box (while supplies last, international shipping tbd). Click the link above to register.
All times are in EST
December 4th—Day 1
Families Only 11am-1pm 11:00-11:15am WelcomeShelley Frappier, The Cute Syndrome Foundation 11:15am-12:00pm SCN8A 101Eric 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
Thank you to our generous sponsors for making this event possible!