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TSC Matters

Archive for the ‘Research Updates’ Topic

Curing the Epilepsies Conference Summary

The National Institute of Neurological Disorders and Stroke (NINDS) has sponsored a Curing the Epilepsies conference every seven years in 2000, 2007, and 2013. A major outcome of these conferences has been the Epilepsy Research Benchmarks, which reflect priorities for research across the epilepsy community. The conference planned for April 2020 was impossible to hold in person due to the coronavirus pandemic. Therefore, the American Epilepsy Society Epilepsy Research Benchmarks Committee revised the benchmarks with community input via a crowdsourcing discussion platform. Read More

Participate in the TSC Biosample Repository Project

To better understand why people are impacted so differently by this disorder and with the aim to eventually be able to better predict its course, our organization invested in a TSC Biosample Repository and Natural History Database. This video demonstrates how we collaborate with TSC individuals and families as well as partners like Seizure Tracker and how other advocacy groups might also consider collecting data in innovative ways. LEARN MORE Read More

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TSC Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity. Read More

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 TSC 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 TSC 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