About Step Forward to Cure TSC®

“And that is how change happens. One gesture. One person. One moment at a time.”
― Libba Bray, The Sweet Far Thing

Sometimes simple things can make a huge difference. Like simple steps, taken by caring people on a mission to improve the lives of those living with tuberous sclerosis complex (TSC). Step Forward to Cure TSC is the TS Alliance’s largest national fundraising program, featuring a series of walks organized by local volunteers and families who are affected by TSC. Successfully launched in more than 30 communities across the United States, this grassroots effort not only generates vital funds for TSC research and support programs but also raises awareness about this disorder.

The Daunting Challenge of TSC

Tuberous sclerosis complex is a genetic disorder that causes non-cancerous tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. TSC is also the leading known genetic cause of both epilepsy and autism. Approximately 85% of those with TSC will experience a seizure at some point in their lives, and more than 50% of those with epilepsy and TSC do not respond to standard antiepileptic medications and have intractable epilepsy. One in two individuals with TSC will also be diagnosed with autism and 80% with kidney involvement.

At least two children born each day will have tuberous sclerosis complex. Current estimates place TSC-affected births at one in 6,000. Nearly 1 million people worldwide are estimated to have TSC, with approximately 50,000 in the United States. Many cases may remain undiagnosed for years or decades due to the relative obscurity of the disease and the mild form symptoms may take in some people.

Children and adults with TSC live each day under unimaginable circumstances, yet they and their caregivers carry on because current TSC-related research indicates their fight could be winnable in the near future. Currently, however, there is no cure.  

About The Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance (TS 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 Tuberous Sclerosis Alliance, and today it is the only national organization dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

In keeping with the spirit and intention of its founders, the TS Alliance has steadily expanded its mission to include:

  • The stimulation and sponsorship of research;
  • The development of programs, support services and resource information; and
  • The development and implementation of public and professional education programs designed to heighten awareness of TSC.

To learn more, visit www.tsalliance.org.