Donors Change the Future of TSC

We are incredibly appreciative to our donors who choose to invest in the TSC Alliance. Our mission is to find a cure for tuberous sclerosis complex (TSC), while improving the lives of those affected—and the TSC community rallies behind this goal every day.

About The TSC Alliance

Our story is one of determination and devotion—an unyielding determination to help bring about better treatments and a cure for tuberous sclerosis complex (TSC) and an intense devotion to all those who share this battle with us. Individuals and families. Health care professionals. Medical researchers. Friends and family. Everyone who has a stake in this fight can multiply his or her impact by linking arms and working together to bring this disease to the brink of a breakthrough.

The TSC Alliance was founded on the core belief that community is a sustaining strength in the face of difficult challenges. In 1974 four mothers who shared the common bond of tuberous sclerosis complex came together to provide fellowship, generate awareness, pursue more knowledge and offer hope to each other. That was the birth of the TSC Alliance, and the spirit and intention of those founders permeate everything we do to this day.

With a professional staff of 20, the TSC Alliance is governed by a Board of Directors comprised of people affected directly by the disease, such as parents or adults with TSC, as well as business professionals.  The staff and Board have achieved 100% giving to demonstrate their leadership in the fight against TSC.

The staff and Board are also supported by an army of nearly 3,000 volunteers who all work together to improve the quality of life for every individual and family affected by TSC. Our mission has two parts: a focus on research discoveries that can result in better treatments and ultimately lead to a cure, as well as outreach programs that help affected individuals and families to navigate an often challenging journey with TSC. Both parts play a pivotal role in our mission, and each offers you the opportunity to support the thousands and thousands of people with TSC who depend on us.

What Differentiates Us As Leaders

The TSC Alliance is a model nonprofit in the rare disease research and support sector. Here are some ways we have demonstrated our unique ability to reach constituents and positively affect their quality of life:

  • Facilitated 28,447 peer-to-peer connections in 2020, helping to reduce the stress and anxiety of a TSC diagnosis.
  • Established and built the first TSC Natural History Database as well as a TSC Biosample Repository and brought together a consortium of researchers who are now conducting the first preventative clinical trial in both TSC and epilepsy.
  • Galvanized the TSC community, and through their advocacy efforts, the Department of Defense Congressionally Directed Medical Research Program has appropriated $97 million toward TSC research since 2002.
  • Invested $27.7 million into TSC research projects through our Research Grants program and contracts.
  • Grew our volunteer base from 95 to more than 2,900 volunteers today, highlighting our community-building expertise.