We are a French-American family with four children living in Paris, France. Mid-January 2020, from one day to the next, our happy lives were turned upside down. Our second child, Ella — 23 years old, beautiful, intelligent, with an undoubtable artistic flair — was diagnosed with an incurable cancer.

Ella had been experiencing headaches on and off for about six weeks and was treated by several different doctors for a sinus infection. One day her headache was so fierce that she couldn’t go to work. This led to an emergency MRI which revealed a tumor on her left ethmoid sinus pushing on the membranes around her brain. A subsequent biopsy showed that the tumor was “SMARCB1-deficient.” Diagnosis: SMARCB1-deficient sinonasal carcinoma.

Ella’s treatment started immediately, but her cancer was inoperable and entirely resistant to – if not accelerated by – the standard of care, chemotherapy and radiotherapy. Her health deteriorated so quickly over the following weeks that she didn’t have enough time to try the only other therapeutic hope that existed at the time, an FDA-approved targeted therapy called tazemetostat. At best, tazemetostat would have only given her an extra couple of months to live. Ella slipped away, barely three months after diagnosis, on April 24, 2020, with her parents and siblings by her side.

As parents who lost their daughter to a particularly brutal SMARCB1-deficient cancer, we cannot let our tragedy be in vain. We founded SMARCB1 Hope to bring attention to SMARCB1-deficient cancers and to support international collaborative research and new R&D approaches that will lead to effective therapies, and ultimately a cure.

Cassie & Jean-Baptiste Toulouse