TSC Matters

Archive for the ‘Research Updates’ Topic

We are Seeking Volunteers for the TSC Biosample Repository

The purpose of this research project is to collect a sample of blood, tissue, fluid or other types of bodily samples from children and adults with tuberous sclerosis complex (TSC). These samples and medical information about how this genetic disorder affects you will be made available to TSC researchers to better understand TSC and hopefully other diseases such as epilepsy or autism. Read More

TSC Research: Our Vision for 2020

As part of our 45th Anniversary Celebration, during the Fund a Cure portion of the live auction we raised funds to support two important research initiatives that we believe will alter the course of this disease: The Newborn Screening Initiative and the TSC-Associated Neuropsychiatric Disorders (TAND) Initiative. Read More

2019 International TSC Research Conference Review

The 2019 International TSC Research Conference: Changing the Course of TSC, co-sponsored with Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST) and the TS Alliance of Mexico, was held June 20-22, 2019 in Toronto, Canada. The conference brought together 251 people from 28 countries and featured 34 oral presentations and 62 posters. A full summary of the conference will be featured in the Fall 2019 issue of Perspective magazine. You can subscribe to Perspective here. Read More

TSC Clinical Research Consortium Update

To initiate and implement clinical studies more quickly and effectively, researchers from five TSC Clinics together with the TS Alliance formed the TSC Clinical Research Consortium in 2012. Since then, TSC Clinical Research Consortium investigators have been awarded over $29 million by the National Institutes of Health (NIH) through competitive grant processes. Read More

TSC Preclinical Consortium Meeting

The TS Alliance launched the TSC Preclinical Consortium in 2016, in collaboration with industry and academia, to test the efficacy of candidate therapeutic drugs and advance the best to the clinical stage. The Consortium started running experiments in August 2016 and have run 21 compounds to date with nine in progress and three others planned for 2019. Additionally, 10 companies have joined the Consortium since its inception. The Preclinical Consortium is a cornerstone of the TS Alliance’s five-year Research Business Plan with a goal to have 75 mechanisms or combinations tested in the Preclinical Consortium by 2023. Read More