2020 finds us as a community very focused on both clinical trial readiness and virtual engagement of our caregiver/patient population. As everyone, including our SCN8A families, become increasingly familiar and comfortable with virtual interactions, we see ourselves as uniquely positioned to reach out to our community in ways that were not possible before. We are creating opportunities for our families to engage with one another as well as with researchers, clinicians, and industry partners in deep and meaningful ways via virtual platforms. While our main event, the Annual SCN8A Clinician, Researcher, and Family Gathering has always included a live stream for families abroad/those that are unable to travel, this year requires us to delve deeper into that virtual experience. As a result, we are learning to reach participants this year that we never have reached before, or in ways we’ve never reached them before.
This year we are proud to offer several programs to our families thanks to sponsorship from our industry partners.
Clinical Trial Readiness Educational Series
We believe that helping educate our families about drug discovery and clinical trials is essential to having an informed community that can consent to participate in studies. In September of 2020, we launched an educational series to engage the SCN8A families in important discussions surrounding drug discovery and clinical trials. Using the Hopin virtual platform we set up sessions with functionality for presentations, moderated conversations, and chat and video Q&A.
Inquiries about sponsorship of the Clinicial Trial Readiness Virtual Series should be directed to Hillary Savoie
Annual SCN8A Clinician, Researcher, and Family Gathering December 2020
TCSF’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.
Due to COVID-19, for our 6th annual gathering, we are transitioning to an entirely virtual event for all of our families. Pending the decision from AES on whether their event moves forward in-person or virtually, we will decide whether to hold hybrid in-person/virtual scientific, clinical, and industry sessions or move all the professional sessions entirely virtual as well. 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!
2021 SCN8A Clinician, Researcher, and Family Gathering Sponsorship Levels
*In order to ensure adequate funding for the Gathering, sponsorship commitments need to be established on or before October 15 for companies to be eligible for full sponsorship benefits for the 2020-2021 year. Exceptions may be made on a case-by-case basis.
Recognition as Platinum Sponsor in program and during the event Logo on main page of event website Recognition on the event invitations and promotions
Recognition as Gold Sponsor in program and during the event Logo on the event website Recognition on the event invitations and promotions
Recognition as Silver Sponsor in program, social media posts, and during the event Logo on the event website
Recognition as Bronze Sponsor in program and during the event
Recognition as Friend Sponsor in program
Inquiries about sponsorship of the SCN8A Clinician, Researcher, and Family Gathering should be directed to Hillary Savoie.
The Cute Syndrome Foundation is grateful to all of our sponsors!