Tuberous Sclerosis Alliance

Organization Overview

www.tsalliance.org

The Tuberous Sclerosis Alliance (TS Alliance) is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Approximately 85 percent of individuals experience seizures during their lifetime, and about one-third of these manifest as infantile spasms, a devastating form of epilepsy occurring in early childhood. Autism occurs in approximately 50 percent of individuals with TSC, and other behavioral and psychiatric symptoms—such as aggression and anxiety—are common. Over 80 percent of individuals with TSC will also develop some form of renal (kidney) disease. The incidence and severity of the various aspects of TSC can vary widely between individuals—even between identical twins. The TS Alliance’s research strategy to accelerate research on TSC focuses on driving collaborative science through five programs: Research Grants, Natural History Database, Biosample Repository, Preclinical Consortium, and Clinical Research Consortium.