The ELLA TOULOUSE FOUNDATION

The Ella Toulouse Foundation for Teenage and Young Adult Cancers, under the aegis of ARC Foundation, was born from a personal tragedy. We are a Franco-American family with four children. Our happy lives were turned upside down in early 2020, when our daughter Ella, aged 23, was diagnosed with a rare and incurable cancer. To turn this ordeal into something positive, we decided to commit ourselves to supporting and funding medical research into teenage and young adult cancers (known as "TYA" or "AYA" cancers).

Alongside the Ella Toulouse Foundation, we have also established SMARCB1 Hope, a non-profit organisation dedicated to cancers like Ella's, which are linked to a mutation in a single gene: SMARCB1. The organisation provides information about these cancers, supports patients, and encourages international cooperation between researchers. SMARCB1 Hope does not directly fund research, but actively supports the Ella Toulouse Foundation and ARC Foundation.

Cassie & Jean-Baptiste Toulouse, Founders

The Ella Toulouse Foundation for Teenage and Young Adult Cancers, under the aegis of ARC Foundation, selects and funds medical research programmes to better understand and treat these cancers, particularly solid tumours and the role of epigenetic mechanisms* in their development.

Despite increasing awareness of TYA cancers, oncology research in this age group remains fragmented and underfunded, and survival improvements lag behind those seen in children and older adults.

There is an urgent need for new therapeutic approaches for TYA patients with cancer. They remain significantly underrepresented in research programmes and clinical trials. Your support can truly make a difference, and rest assured that we will keep you informed of the tangible progress your generosity makes possible.

* Epigenetic mechanisms are temporary modifications to DNA that regulate the activation or deactivation of different genes, without deleting them. These mechanisms play a major role in the development of many cancers, particularly SMARCB1-deficient tumours.

The Ella Toulouse Foundation and ARC Foundation have jointly launched their first call for TYA cancer research projects in October 2025. Projects must be submitted by January 2026, and grants will be awarded at the end of May 2026.

Ella was born on 8 October 1996, brimming with joy and energy, with a hint of mischief from day one. After a happy childhood, she grew into an extraordinary young woman with a decidedly original temperament, driven by her many passions and an inexhaustible curiosity and thirst for knowledge, inspiring many of those she met along her journey in France, the United States, the United Kingdom, and Japan.

An artist at heart, she never claimed to be one. Intellectually gifted, she was never boring. Her quick wit infused her entire personality — whether in her eccentric dress sense, the depth of her reflections on art and history, or her absolute honesty in her relationships with others, right through to the dignity and love she showed during her illness.

Ella's life was brutally cut short at the age of 23 by an extremely aggressive cancer of the ethmoid sinus that rapidly spread to the meninges — a SMARCB1-deficient sinonasal carcinoma (SDSC). The tumour was inoperable and proved completely resistant to standard chemotherapy and radiotherapy treatments.

Ella left us on 24 April 2020, just three months after her diagnosis.