Everything in 2020 felt different, didn't it? This year The Cute Syndrome Foundation's 6th Annual Clinician, Researcher, and Family Gathering was no exception...as we moved forward with a fully virtual Gathering.
While we have always offered live streaming of the event for our families who cannot travel, this year we focused on creating a virtual gathering experience that increased the opportunities for interaction and a sense of connection. We certainly missed seeing one another in person. And we all we all know that the experience of being present together, of wrapping our arms around someone we've only ever known on Facebook, of playing with each other's children is entirely irreplaceable.
However, a virtual Gathering allowed for some important benefits to the wider community. There were increased opportunities for participation among families who might never have been able to travel for an event due to geographic, financial, or medical limitations. And, thanks to our other 2020 Virtual Programming for our families--including Social and Emotional Support, Clinical Trial Readiness Education, and Pre-Gathering Vitual Sessions--our families were especially prepared for not just listening, but engaging--offering observations, asking questions, and connecting--in a virtual platform.
However, the virtual can sometimes use a bit of help from hands-on experiences. In order to add to the Gathering experience, TCSF provided a “Conference in a Box” in order to add to the conference going experience...and also to provide attendees with physical reminders of the community we have built around SCN8A.
These boxes included SCN8A-family-made goods including face masks, decals, and a cocktail/mocktail list as well as notepads, pens, and a thermal mug. We also included our annual magnets, showing the faces of our children and featuring the faces of the children we have lost--reminders that are visibly present in some of the labs and offices that are most invested in our community.
We welcomed over 200 total Gathering attendees, including families, industry professionals, researchers, and clinicians. Participants represented 20 different countries around the world. We also saw incredible engagement within the platform chat during the meetings--both between professional attendees, continuing discussions post-presentations, as well as between family participants and professional attendees. We have been able to capture those conversations and, in some instances, provide further opportunities for family education, information sharing and/or professional connections.
Our goal for this Gathering was to see the virtual setting as an opportunity--not to create another webinar or another prerecorded powerpoint presentation, but to provide a human-scale, emotional, and living event experience. Ahead of the Gathering we collected videos from our families--which were woven throughout the event, to ensure that our children were never far from our minds. TCSF Founder and Director, Hillary Savoie kicked off the Gathering, setting the stage for this approach:
Using a virtual event hosting platform allowed conference attendees to receive information, ask questions, and interact with one another in a variety of ways, including informational sessions, interactive sessions, virtual expo booths, and a chat feature. Fun fact: a total of 1880 messages were sent throughout the course of the two-day Gathering!
Our sessions included SCN8A 101, a clinician roundtable, research roundtable, siblings panel, cocktail/social hour, separate discussion groups for moms and dads, and an interactive session on how to develop developmental forms that take into account the humanity and uniqueness of our children. As always, we concluded our event by taking some time to listen to the SCN8A families about how TCSF can continue to best meet the felt needs of the community.
Throughout this year’s Gathering, the SCN8A community was treated to videos that were created by SCN8A families, highlighting their children’s stories, struggles, accomplishments, and overall cuteness. We also featured two longer Parent Story videos. Check out Heather's story about her son Tate, here:
And Gaelle's Story about her son Milo:
The full public sessions will be available on our website soon! You can watch Michael Hammer, PhD's presentation on his SCN8A mouse models on our Gathering video page. All of the videos made by our families are there as well. As always, our families say it best:
Thank you for the glimmer of hope.
I love the collaborations happening. Best way to move forward.
Wonderful information and so thankful for everyone.