TCSF's 1st Researcher Roundtable Hosted in Raleigh, NC - July 2019
The Cute Syndrome Foundation, in collaboration with John Schreiber, Michael Hammer, and TCSF Founder Hillary Savoie, organized and funded a cutting-edge SCN8A Research Roundtable that took place in Raleigh, North Carolina the weekend of July 9-11, 2019.
This event brought together close to 30 leading SCN8A researchers, clinicians, and industry leaders for an intensive strategic planning meeting. While TCSF holds an annual SCN8A Clinician, Researcher, and Family Gathering, in conjunction with the American Epilepsy Society Meeting in December, it has become clear that having these researchers meet independently for an extended SCN8A-focused meeting is the best way to drive innovation and collaboration.
Over a day and a half of discussions, brainstorming sessions, and collaboration initiatives, participants focused on the state of SCN8A research, collaborated on grant efforts, and outlined next steps necessary to translate the scientific understanding of SCN8A into improved treatments, and outcomes for individuals living with SCN8A. This event will help the scientific community plan for the next steps we need as we consider what models and technologies we have for learning about SCN8A, what a natural history study will look like, and what steps need to be made to plan for potential clinical trials in our community. We believe the collaborative work between family advocacy groups, clinicians, researchers, and industry partners is key in driving research forward.
Five major pharma companies were also represented at this meeting - several of them as financial sponsors, which is certainly promising. The event opened with a cocktail party, hosted by Praxis Precision Medicines, on the evening of July 9th. After a full day of meetings on the 10th, participants shared a meal hosted by Xenon Pharmaceuticals. In addition, thanks to a generous gift from Southwest Airlines, TCSF provided a number of plane tickets to non-industry participants.
We are grateful to our sponsors: Xenon Pharmaceuticals, Praxis Precision Medicines, Greenwich Biosciences, and Zogenix for making this event possible.