In 2022, the TSC Alliance will host six webinars focused on research and featuring known experts in the TSC community as part of our Research Education Webinar Series. These free 1-hour presentations will include an open question-and-answer period and offer valuable information on TSC research, clinical trials, and more. Additionally, a research primer prior to the 2022 World TSC Conference will be held.
mTOR Inhibitors: Past, Present and Future
Thursday, June 23, 2022
7:30 pm ET | 6:30 pm CT | 5:30 pm MT | 4:30 pm PT
Presented by: Darcy Krueger, MD, PhD, TSC Clinic Director at Cincinnati Children’s Hospital Medical Center, Professor of Clinical Pediatrics and Neurology at the University of Cincinnati College of Medicine, Member of the TSC Alliance Board of Directors
Join us for a webinar to learn about the role of mTOR and mTOR inhibitors in tuberous sclerosis complex (TSC). This webinar will provide a brief history of mTOR, how mTOR inhibitors are currently being used to treat different manifestations of TSC, the current limitations and side effects of mTOR treatments, and an overview of research to optimize the use of mTOR treatments. This webinar is open to everyone and will provide a foundational understanding of mTOR to prepare attendees for the research sessions at the 2022 World TSC Conference being held July 28-31 in Dallas, Texas.
May 25, 2022 – Basimglurant: Potential New Mode of Action for Seizures in TSC
Presenters: Mustafa Sahin, MD, PhD, Professor of Neurology at Harvard Medical School and Director the Rosamund Stone Zander Translational Neuroscience Center at Boston Children’s Hospital; Dr. George Garibaldi, Co-Founder and President, Head of Research and Development of Noema Pharma AG and Dr. Renata Lazarova, Vice President Development, Pediatric Programs at Noema Pharma and lead for TSC development program
Drs. Sahin, Garibaldi and Lazarova provide an overview of a clinical trial testing basimglurant, a potential new mode of action to provide seizure control to people with seizures associated with TSC. The study is currently enrolling in the US, Europe, Israel, Asia and Australia. The study is open to children 5 years old and older, adolescents and adults up to 30 years old whose seizures associated with tuberous sclerosis complex are not sufficiently controlled by current treatment. For more information including the list of participating sites, please contact Jo Anne Nakagawa at firstname.lastname@example.org or 301-562-9890.
April 21, 2022 – STARS Clinical Trial Town Hall
Presenter: Dr. Robert Roebling, Senior Medical Director in Seizure Freedom Mission, UCB, Inc.
Dr. Roebling provides an introduction and overview to the STARS clinical research study. The global Phase 3 trial is designed for people who experience prolonged epileptic seizures, lasting more than 3 minutes. It is testing an inhaler containing an investigational drug to see whether it could help people who experience prolonged epileptic seizures.