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.

Alzheimer’s in TSC study

Tuberous Sclerosis Complex (TSC) is a genetic condition due to mutations in TSC1 or TSC2 commonly diagnosed in the first few years of life. Advances in TSC research has allowed TSC patients to live well beyond the age of 50. Subsequently, many TSC patients note brain function changes such as memory difficulties or problems learning new computer programs beginning in their mid-to-late 40’s. A research group at Duke University began characterizing these brain function changes in 2018. They believe that these changes may represent the early stages of a neurodegenerative condition.Read More

Listen to the latest episode of TSC Now

Check out the newest episode of TSC Now, where host Dan Klein speaks with Justine Ravindranath, Commercial Operations Manager at Nobelpharma America, about the findings of an adult panel hosted by Nobelpharma America on Rare Disease Day. Dan also connects with Iris Mustich, an adult with TSC and TSC Alliance volunteer who was awarded the Keith Hall Distinguished Leadership Award during the Volunteer Leadership Celebration earlier this year. Listen now and subscribe wherever you listen to podcasts! ListenRead More


TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine if it can prevent seizures and epilepsy in children diagnosed with TSC. The study is currently enrolling infants diagnosed with TSC who are at risk of developing epilepsy. Learn more Listen to a recent episode of TSC Now featuring Darcy Krueger, MD, PhD, Principal Investigator for the TSC-STEPS trial.Read More