About SMARCB1 Cancers
SMARCB1 cancers are aggressive, affect mostly children and young adults and lack effective treatments. They can appear at different ages and in different parts of the body, bear different names and have different pathologies and symptoms, but they are all driven by the loss of one single gene: SMARCB1. Knowledge among specialists the world over is limited and scattered. By joining forces, we can find a cure for these genetically simple cancers and make a great leap forward in understanding epigenetic mechanisms in all cancer.
About Us
Cassie & Jean-Baptiste Toulouse, Founders
We are a French-American family with four children. In 2020, from one day to the next, our happy lives were turned upside down. Our second child, Ella, was diagnosed with an incurable SMARCB1-deficient sinonasal carcinoma (SDSC) at the age of 23.
What We Do
We foster a community of scientists, treating oncologists, patients, and families around all SMARCB1 cancers and support international collaborative research and the development of new R&D approaches. We shine a spotlight on SDSC (SMARCB1-deficient sinonasal carcinoma) and provide support and guidance to patients. Through sharing information, uniting research efforts, and connecting with one another, we will accelerate progress towards a cure for SMARCB1 cancers.
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