TS Alliance

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected. The TS Alliance promotes research to find better treatments and ultimately a cure and offers a wide range of programs and services for those affected by TSC. TSC is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. TSC is the leading genetic cause of autism and epilepsy, and the aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. In 1974, four mothers formed the organization to provide fellowship, generate awareness, pursue knowledge and offer hope to those who shared the common bond of TSC. 2019 marks the TS Alliance’s 45th anniversary, and these goals still remain the driving force of the organization. Since our humble beginnings, the TS Alliance has funded nearly $20.3 million in support of basic, translational and clinical research. The funding has supported research on the genetics of TSC, basic mechanisms of both tumor growth and central nervous system manifestations of TSC, translational research, and clinical trials, as well as the development of research tools such as biomarkers, animal models, and a database of TSC1 and TSC2 genetic variants. This seed funding, combined with a Government Advocacy Team pressing for Federal research funding, has leveraged an additional $342 million in the past 16 years from the National Institutes of Health and the Department of Defense’s Tuberous Sclerosis Complex Research Program. Research to find a cure for TSC offers hope for millions of people, not just those affected, because it is truly a linchpin disease. Unraveling the mysteries of TSC may have far-reaching effects on the understanding of epilepsy, autism, diabetes and even breast and kidney cancer.