You Could Be the Key

There was a time not long ago when the average life expectancy for individuals with tuberous sclerosis complex (TSC) was only 30. A time when only those individuals who were most severely affected even received a diagnosis of TSC, and healthcare professionals did not appreciate the need for close follow-up.

We’ve come so far. We’ll go even further with you.

Step Forward GoalThe pace of TSC research has never before moved so quickly and expertly. The TS Alliance is proud to have served as a catalyst – first with the discovery of the TSC genes; second, the genetic pathway; and third in bringing together the research community for research conferences that have led to the clinical trials taking place today. These have only been made possible through the generous partnership of compassionate individuals, foundations and corporations with a vested interest in important scientific breakthroughs.

The TS Alliance’s ultimate goal is to Unlock the Cure to TSC. Research has shown TSC to be a true linchpin disease. Why? Because the genetic pathway involved in TSC is the same pathway affecting more than a dozen major diseases and disorders, including autism, epilepsy, and cancer. Every dollar spent on unlocking the cure to TSC may lead to quantum leaps in our understanding of these other diseases.

To fund the next wave of scientific breakthroughs, we’re launching our Unlock the Cure fundraising campaign, a vital step toward implementing research needed to move potential treatments from the lab (pre-clinical) to the TSC community (trials). These discoveries truly make a difference in the lives of individuals and families as they experience their own triumphs and challenges with TSC.

One great example is Griffin, who is an active 13 year old, loves to jump on the trampoline with his brother and sister, and is a truly happy teen. But two years ago, a routine MRI showed an explosion of growth of life-threatening tumors (see image) called subependymal giant cell astrocytomas (SEGAs) in the ventricles of his brain. This meant life-saving surgery to relieve the hydrocephalous (or relieve the pressure on his brain) would be risky, difficult and might not be completely successful. Five years earlier there would have been no alternative but to proceed with the risky surgery and hope that Griffin would survive. But today, because Griffin was able to participate in a clinical trial of an investigational medication to shrink the SEGAs, we can see a significant reduction in the size of his tumors (see image). On top of that, he has been seizure-free for 18 months; something he had never experienced in his lifetime!

Griffin’s story inspires all of us and encourages the TS Alliance to work even harder. You can help us raise $5 million for research programs over the next three years, so together we may strive to:

  • Advance our Drug Screening Program to identify FDA-approved drugs that can be repurposed for treatment in TSC or uncovering new compounds that could lead to new treatments.

  • Identify Biomarkers needed for future clinical trials, which will be a requirement for measuring progression of disease and effectiveness of new treatments.

  • Increase funding of TS Alliance-Supported Research to ensure we have a pipeline for basic and translational studies to feed our Drug Discovery Program.

  • Develop a Clinical Research Network to expedite implementation of future clinical trials and to be better able to recruit individuals for clinical studies such as these.

  • Expand the TSC Natural History Database to help identify lifelong trends in the physical traits of TSC to improve quality of life and long-term outcomes and to develop a method of quickly identifying individuals for future clinical trials.

With a cure. Where our story must end.


For more information on Unlock the Cure, contact Kari Luther Rosbeck, President & CEO, at krosbeck@tsalliance.org or (800) 225-6872.

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