Founder Story
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 SMARCB1-deficient 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: SDSC (SMARCB1-deficient sinonasal carcinoma).
Ella’s treatment started immediately. Her cancer was inoperable and proved to be 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 couldn’t even 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. We also work to raise awareness specifically about SDSC and to support SDSC patients and help direct them to specialized multidisciplinary teams for guidance and optimal treatment.
Cassie & Jean-Baptiste Toulouse, Founders
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Meet Ella
Ella came into this world on October 8, 1996, full of joy and gusto and a little sprinkle of devilishness.
Throughout her life, Ella always remained true to herself, embracing who she was at the core and her many intriguing and esoteric passions. Her original and active mind permeated her entire way of being, from her quirky style and dress to her deep thinking and solid principles, to the dignity and love she showed when faced with the ultimate.
Ella was an artist through and through, though never claimed to be one despite herself and her work. Her creativity was palpable. It could be seen in everything she touched and rarely went unnoticed. But it was only after she died that we discovered a remarkable cache of hundreds and hundreds of inks and gouaches she had kept to herself and never shared, carefully stashed away in her closet.
Ella’s being and approach to life inspired many in France, the US, the UK, and Japan on her circuitous path to becoming the extraordinary young woman she was.
Ella is unforgettable, mysterious, a bright shooting star. She lights our way and stands by our side.
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Some of Ella’s Cache
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