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How We Go About It
SMARCB1 Hope supports and funds medical research through the Ella Toulouse Foundation for Adolescent and Young Adult Cancers, under the aegis of Fondation ARC. Fondation ARC is France’s leading private cancer research funding organization. Our association with Fondation ARC brings greater visibility and funding potential to SMARCB1 cancers, in addition to top-notch international scientific committees for project selection and oversight.
While retaining a primary focus on solid tumors and the crucial role of epigenetic mechanisms – such as SMARCB1 – in their development and growth, the Ella Toulouse Foundation, in association with Fondation ARC, supports adolescent and young adult (AYA) cancers more broadly. We believe that solely supporting research into SMARCB1 cancers is inherently limited: there are too few patients, and the few scientists and oncologists engaged in the field are scattered across the world in silos.
We believe in the power of cross-fertilization and the sharing of different know-hows, specializations and experiences. This is how we will come to understand SMARCB1 cancers and the unique biological and clinical characteristics of other AYA cancers, most often not a result of environmental elements and with survival rates significantly lagging behind those seen in pediatric and older patients.
This year, the Ella Toulouse Foundation, jointly with Fondation ARC, has selected 4 research projects for funding.
Research Projects: the 2026 Selection
Project #1: Multi-omic and spatial, cross-age characterization of SMARCB1-deficient tumors
Team leadership: Sophie POSTEL-VINAY – INSERM U981, “Molecular Predictors and New Targets in Oncology”, Gustave Roussy – Villejuif, France
Anticipated duration: 4 years
Committed Funding: €599,946
SMARCB1-deficient tumors are a group of rare cancers that typically affect very young children or adults, but sometimes also adolescents and young adults (AYAs); it is currently unknown whether AYA cases form a biologically distinct entity, why they arise at this age, or whether they need specific treatment approaches. Bringing together teams with complementary expertise, the project will map the epigenetic (methylation) and transcriptomic profiles of as many tumors as possible, then use single-cell and in situ spatial transcriptomics to compare the cellular composition and tumor microenvironment of AYA cases against non-AYA cases. Bioinformatic and AI tools will be developed to integrate this multi-omic data and identify age- and tumor-type-specific molecular features and therapeutic vulnerabilities — to be made available to the research community and tested in preclinical models. The project may also shed light on tumor dormancy and on how antitumor immune responses change over the course of life.
Project #2: Biological determinants of therapeutic resistance in synovial sarcoma in adolescents and young adults
Team leadership: Laura BROUTIER, Centre de Recherche en Cancérologie de Lyon (CRCL), Team “Resistance Therapy” – Lyons, France
Anticipated duration: 4 years
Committed Funding: €595,000
Synovial sarcoma is a rare cancer mainly affecting adolescents and young adults (AYAs), who — despite having the same tumors and receiving the same treatments as children — have significantly worse survival, for reasons that remain unexplained. The team has built one of the first patient-derived organoid biobanks for synovial sarcoma, spanning pediatric, AYA and adult cases; these tumor “avatars” faithfully reproduce the key features of the original tumors. Using this biobank, the project will perform single-cell transcriptomic and epigenomic profiling before and after chemotherapy to identify resistant cell populations and their vulnerabilities, with the goal of designing rational combination therapies. Beyond synovial sarcoma, the work is expected to provide a broader framework for studying age-specific cancer biology and to support more personalized treatment strategies via organoid-based clinical trials.
Project #3: Targeting aberrant metabolic pathways in adolescent / young-adult high-grade gliomas by modulating inter-organelle communication
Team leadership: Arthur BASSOT, Centre de Recherche en Cancérologie de Lyon (CRCL) — Team “GLIMMER of Light” (Glioblastoma Metabolism, Heterogeneity, and Organoids) – Lyons, France
Anticipated duration: 4 years
Committed Funding: €511,500
High-grade gliomas (HGG) in adolescents and young adults (AYAs) are currently treated only with surgery, radiotherapy and chemotherapy (temozolomide); because AYAs’ bodies are still developing, they are particularly vulnerable to long-term treatment toxicity, including secondary cancers. The team has previously shown that another aggressive brain tumor (diffuse midline glioma) and adult glioblastoma depend on contact sites between the endoplasmic reticulum and mitochondria (MERCs), and that inhibiting key MERC proteins such as ERO1α reduces tumor aggressiveness. This project will characterize the protein composition of MERCs in AYA HGG, then modulate key MERC proteins genetically and pharmacologically — combined with standard chemo/radiotherapy — to test their role in tumor behavior, validating findings in mouse models. The aim is to identify new therapeutic targets specific to AYA brain tumors, building on 3D tumor-microenvironment models the team has previously developed.
Project #4: Modeling treatment-resistance mechanisms in leukemias of adolescents and young adults
Team leadership: Vahid ASNAFI, Institut Necker Enfants Malades — Team 2, Normal and Pathological Lymphopoiesis — Paris, France
Anticipated duration: 4 years
Committed Funding: €600,000
T-cell acute lymphoblastic leukemia (T-ALL) is an aggressive blood cancer with still-limited cure rates, particularly in adolescents and young adults (AYAs), who fare markedly worse than children with the same disease. The team’s preliminary data identified a TAL1-overexpressing subtype that is especially resistant to treatment specifically in AYA patients. The project will use multi-parameter, including single-cell, genetic analyses to compare TAL1+ AYA and pediatric leukemia samples in order to uncover the molecular basis of this age-related resistance, then test candidate targets in preclinical models for efficacy and toxicity. The team hopes the work will both reveal resistance mechanisms that could extend to other AYA cancers and identify clinical strategies to improve survival in this specific leukemia subtype.