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Unlock the Cure

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In Her Own Words

“A cure won’t be handed to us or be given by any other means than by us continuing to advocate for ourselves and our families.” – Debora Moritz

When Debora’s son Griffin was 10 years old, he was able to participate in a clinical trial of an investigational medication to shrink SEGAs, and as a result a significant reduction occurred in the size of his tumors. Moreover, he has seen a dramatic decline in frequency and severity of seizures. Not only did the trial improve her son’s quality of life, but it also gave families a new treatment for SEGAs and kidney manifestations. Read more about her story and what the future holds for TSC research.

Since its inception in 2011, Unlock the Cure has raised more than $10 million for TSC research. The impact this campaign has had on our ability to build the framework for the next great medical breakthrough has been truly outstanding. You can find a full summary of the first phase of Unlock the Cure as well as a report on current progress here.

In 2015, the TS Alliance entered phase two of this campaign, Unlock the Cure ACT (Accelerate, Collaborate, Target) Now! This phase will focus on driving collaborative science and building connections among the programs developed during the initial Unlock the Cure campaign. The result will be an inter-dependent research program where all components work together seamlessly to efficiently deliver new treatment options and continue to expand our understanding of TSC.

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The next four-year campaign is focused on three distinct calls to action:

  • ACCELERATE research and the development of new treatments by seamlessly integrating all elements of our research platform.
  • COLLABORATE with the TSC community to shape research meaningful to their quality of life, to actively participate and to mobilize to raise awareness and funds.
  • TARGET specific research initiatives to advance toward preventative treatments and personalized medicine.

Our goal is to raise $25 million by the end of 2018, of which $5 million will be raised from private sources and $20 million leveraged from government sources directed to clinical research consortium projects (such as preventative clinical trials).

The Tuberous Sclerosis Alliance has been changing the lives of individuals and families in the TSC community by driving TSC research since 1984. The Unlock the Cure campaign created a research platform on key points along the drug discovery path:

  • Increasing funding of Research Grants to cultivate a new generation of scientists;
  • Creating a Preclinical Consortium to systematically test candidate drugs and move them toward clinical trials;
  • Expanding the Natural History Database to understand the progression of TSC throughout a lifetime;
  • Establishing a Biosample Repository as a resource to help researchers design personalized treatments in the future;
  • Developing a Clinical Research Consortium to rapidly conduct clinical studies, including the first preventative clinical trial for epilepsy in United States

Together, these programs build on the successful Unlock the Cure campaign by driving collaborative science and ultimately deliver new treatment options while expanding our understanding of TSC.

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