SMARCB1 Hope

SMARCB1 Hope was founded by Cassie and Jean-Baptiste Toulouse after their daughter Ella was diagnosed in 2020 with SMARCB1-deficient sinonasal carcinoma (SDSC) at the age of 23, according to its home page. It works across all cancers driven by loss of the SMARCB1 gene, which it notes appear at different ages and in different parts of the body, encouraging international research cooperation and the sharing of data and tissue banks, and it gives individual guidance to people with SDSC. Its research page describes a 2023 symposium of about 30 SMARCB1 experts held under the guidance of Olivier Delattre and Franck Bourdeaut of the Institut Curie, and the Ella Toulouse Foundation for adolescent and young adult cancers under the aegis of Fondation ARC. Its legal notice gives it as a French declared association registered with INSEE (SIRET 922 875 067 00014), with a postal address in Paris.