2019 International TSC Research Conference

Tuberous Sclerosis Alliance, Silver Spring MD

Investigators

Abstract

The goals of the 2019 International TSC Research Conference are to (1) inspire new research directions by exposing trainees and researchers from outside the field to the latest research developments in tuberous sclerosis complex (TSC), and (2) stimulate collaborative research to address unmet medical needs of those affected by TSC as well as related disorders, including epilepsy, autism, lymphangioleiomyomatosis (LAM), and rare diseases with overlapping phenotypes. TSC is an autosomal dominant genetic disorder characterized by abnormally regulated cell growth in many organs due to a mutation in either of the TSC1 or TSC2 genes. Toward the first goal, the organizing committee will (a) sponsor a half-day TSC Early Career Research Symposium the morning before the main conference begins, (b) utilize travel awards to bring trainees and junior faculty to the conference to participate in the half-day symposium, share their data during the research conference in platform or poster presentations, and (c) expose them to broader research opportunities in the field of TSC and related disorders. Relevance to TSC is not a criterion for selection of travel award recipients to encourage sharing of research concepts that are not necessarily mainstream in the TSC field. At least 3 of the 15 travel awards will be made to members of traditionally underrepresented groups. The organizing committee invited 10 speakers who have not presented at a TSC or LAM conference going back to 2013. Toward the second goal, the conference will (a) assemble non-TSC-focused researchers together with TSC experts in an environment conducive to sharing data and networking by providing long breaks and mealtimes for interaction, (b) utilize breakout sessions to discuss relevant interdisciplinary topics, and (c) combining in the same session?to the extent reasonably possible?basic, translational, and clinical research data and hypotheses applicable to neurological, neuropsychological, and tumor biological aspects of TSC presented by established researchers alongside trainees and junior researchers to be selected from submitted abstracts. To ensure concepts presented differ greatly from previous conferences, 16 of 21 (76%) invited speakers did not speak at the 2017 International Research Conference on TSC and LAM. To ensure new individuals are involved in shaping the 2019 conference, 33% (7 of 21) of the invited speakers and 23% (3 of 13) of the organizing committee did not attend the 2017 International Research Conference on TSC and LAM. A 90-min joint session including patients will conclude the research conference on Saturday, giving patients an opportunity to hear about key research from, and ask questions of, international TSC investigators. Toronto, Canada, was chosen as the conference site because it is easily accessible via two international airports and by train and car from the Northeastern and Midwestern US, members of the TS Canada ST board of directors can help with local arrangements, and the meeting venue is across the street from The Hospital for Sick Children, the site of a TS Alliance-recognized TSC Clinic and one of Canada?s leading institutions for pediatric research and care.