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| Funder | NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE |
|---|---|
| Recipient Organization | Tuberous Sclerosis Alliance |
| Country | United States |
| Start Date | Sep 01, 2023 |
| End Date | Aug 31, 2024 |
| Duration | 365 days |
| Number of Grantees | 1 |
| Roles | Principal Investigator |
| Data Source | NIH (US) |
| Grant ID | 10753912 |
The goals of the 2023 International TSC Research Conference are to (1) inspire new research directions by exposing trainees and researchers from outside the field and belonging to groups underrepresented in research to the latest research developments in TSC or other relevant fields, 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 TSC Alliance and 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 selected from submitted abstracts to the Early Career
Researcher Symposium and research conference to engage with other trainees and early-stage investigators regarding issues unique to their career stage, share their data in platform and poster presentations with feedback on their science and on their presentation skills, and expose them to broader research opportunities
(e.g., industry, patient advocacy) in the field of TSC and related disorders; and (c) increase the diversity of attendees by reserving half of the travel awards for scientists who belong to underrepresented groups in research, including scientists without data to present on TSC-related work. Toward the second goal, the
conference will (a) assemble non-TSC-focused researchers together with TSC experts in an environment conducive to sharing data, networking, and building opportunities for future collaboration; (b) utilize breakout sessions to discuss relevant interdisciplinary topics; and (c) employ platform sessions specifically to facilitate
cross-specialty understanding by combining in the same session—to the extent reasonably possible—basic, translational, and clinical research data. To ensure concepts presented differ meaningfully from previous conferences, none of the 12 invited speakers were invited speakers at the TSC Alliance-sponsored 2021 virtual
or 2019 in-person International TSC Research Conferences, and only one was an invited speaker at recent conferences sponsored by the UK TSC Association and The LAM Foundation. To ensure new individuals are involved in shaping the 2023 conference, 83% (10 of 12) of the invited speakers and 25% (3 of 12) of the
organizing committee did not even attend the TSC Alliance-sponsored 2021 virtual or 2019 in-person International TSC Research Conferences. To facilitate interaction of researchers with patients, an educational meeting for patients with TSC and/or caregivers will be held on Saturday in the same hotel as the research
conference. The close proximity enables researchers to interact with patients at meals, and a 1-hour 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.
Tuberous Sclerosis Alliance
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