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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.

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

August Volunteer Opportunities Available

Champion Our Cause: Join the TS Alliance Volunteer Movement “The smallest act of kindness is worth more than than the grandest intention.”  – Oscar Wilde The TS 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

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

The TS 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