TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.
Transition of Epilepsy Care Questionnaire
Open to adults or caregivers of a child or dependent adult with TSC and seizures.Read More
Tuberous Sclerosis Research Opportunity
Please help us better understand factors that impact the decision to undergo epilepsy surgery.Read More
Quality of Life Study – Checklist for adults with TSC (CHAT-TSC)
Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC? Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her research team have developed a questionnaire for adults with TSC, called the Checklist for Adults with TSC or CHAT-TSC. In this questionnaire, adults with TSC or caregivers can indicate all of the problems experienced living with TSC. In the future, they hope this can be used by patients and health care providers, to discuss all of the problems caused by TSC, and to arrange proper care. Also, it could be...Read More
Epilepsy Trial
Adjunctive Ganaxolone Treatment (Part A) in TSC Followed by Long-term Treatment (Part B) Study Purpose To assess preliminary safety and efficacy of ganaxolone as adjunctive therapy for the treatment of primary seizure types in patients with genetically- or clinically-confirmed TSC-related epilepsy through the end of the 12 week treatment period. Learn moreRead More
Behavioral Research – Open to families with children with and without TSC
Tell us about your child’s emotional outburstsRead More
Ongoing Genetic Studies
See below for ongoing studies.Read More
Ongoing Early Intervention and Autism Trials
See below for ongoing trials.Read More
Ongoing Biosample Studies
See below for ongoing studies.Read More
Ongoing Facial Angiofibroma Trials
See below for ongoing trials.Read More
June Volunteer Opportunities Available
Champion Our Cause: Join the TSC Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today.Read More