ELLA TOULOUSE FOUNDATION

The Ella Toulouse Foundation for Adolescent and Young Adult Cancers, under the aegis of Fondation ARC, grew out of one family’s journey. We are French-American family with four children. Our happy lives were turned upside down at the beginning of 2020, when our daughter Ella, 23 years old, was diagnosed with a rare and incurable cancer. In order to move forward with our personal tragedy and make something positive come out of it, we decided to commit ourselves to supporting and funding medical research on Adolescent and Young Adult (AYA) cancers.

Alongside the Ella Toulouse Foundation, we also created SMARCB1 Hope, a non-profit association dedicated to providing information on cancers like Ella’s, which are all linked to the mutation of one single gene: SMARCB1. The association provides information on these cancers, accompanies patients and encourages international cooperation among researchers. SMARCB1 Hope does not finance research directly, but actively supports the Ella Toulouse Foundation.

Cassie & Jean-Baptiste Toulouse, Founders

The Ella Toulouse Foundation for Adolescent and Young Adult Cancers (AYA cancers) selects and funds medical research programs to better understand and treat these cancers, with a particular focus on solid tumors and the role of epigenetic mechanisms * in their development and growth.

Despite increasing awareness of AYA cancers, oncology research in this transitional age group remains fragmented and underfunded, and survival improvements lag behind those seen in pediatric and older patients.

There is an urgent need for new therapeutic approches for AYA cancer patients, who remain vastly underrepresented in cancer research and clinical trials. Your support can truly make a difference. And rest assured we will keep you informed of concrete advances that your generosity will enable.

*Epigenetic mechanisms are modifications in DNA which regulate the expression or disactivation of different genes. These mechanisms play a major role in the development of many different cancers, including SMARCB1-deficient tumors.

The Ella Toulouse Foundation and Fondation ARC jointly launched their first call for AYA Cancer Research Projects in October 2025. Proposals are to be submitted by January 13, 2026 and grants will be awarded at the end of May 2026.

Ella came into this world on October 8, 1996, full of joy and gusto and a sprinkle of mischief. After a happy and carefree childhood, she developed into an extraordinary and original young woman, always remaining true to herself and her many intriguing and esoteric passions. Ella had a thirst for learning and inexhaustable curiosity which inspired many on her circuitous path in France, the US, the UK, and Japan.

Ella was an artist through and through, though never claimed to be one. Intellectually gifted, she was never boring. 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 during her illness and when faced with the ultimate. Ella’s life was brutally cut short at the age of 23 by an extremely agressive cancer that started in her ethmoid sinus and quickly took over her brain: SMARCB1-deficient sinonasal carcinoma (SDSC). Her cancer was inoperable and proved to be entirely resistant to the standard of care: chemotherapy and radiotherapy.

Ella slipped away on April 24, 2020, barely three months after receiving her diagnosis.