What We Do - Overview

Building a SMARCB1 Cancer Community

We work to build and foster a global community and conversation around SMARCB1 cancers to accelerate progress towards a cure.

Over the last decade, cancer research has moved from an anatomic (organ based) perspective to a more transversal molecular understanding. SMARCB1 cancers grow at different ages and in different parts of the body, but their common SMARCB1 mutation unites them. If scientists specializing in different SMARCB1 cancers work more closely together and learn from one another, all SMARCB1 patients will benefit from the synergy.

Our goal is to move the field forward for all SMARCB1 cancers by encouraging international cooperation, research programs and the sharing of data and tissue banks. We organize and host research symposiums, propose, select and raise funds for research projects, and connect and inform stakeholders in the SMARCB1 cancer space: scientists, treating oncologists, patients, and families.

Research Events

We kicked off our efforts to create a SMARCB1 cancer community with the groundbreaking SMARCB1 Hope 2023 Symposium.

Under the guidance of Olivier Delattre et Franck Bourdeaut from the Curie Institute in Paris, we hosted 30 internationally renowned experts in the SMARCB1 field – oncology researchers, clinicians, scientists, biologists, immunologists, and geneticists from North America, the UK and Europe.

Over 3 days in the south of France, through work sessions, presentations, and convivial lunches and dinners, the experts discussed their work, synergized, shared progress and failures, bounced around ideas, and planted seeds for future collaborations.

Stay tuned for our next event!


Research Funding

We support and encourage research that will lead to successful medical protocols to cure SMARCB1-deficient cancers. We have a particular interest in SMARCB1-deficient sinonasal carcinoma (SDSC), one of the SMARCB1 cancer family’s more underrecognized and understudied members. 

Differentiating promising research from also-ran projects is difficult. Researchers are like entrepreneurs, all believing in what they do, but not always aware of other projects that might compete with their research or render it altogether obsolete.

We believe that the only way to invest smartly in research (like in start-up companies) is to stay informed, meet researchers, discuss their projects, and take the time necessary to understand and decide.

It has taken us over 2 years to select the first two programs we would fund — or rather, co-fund. Both happen to be in France, because that’s where we live today, and where we nurtured our first high-quality dialogue with people working on SMARCB1 cancers. Over time, we certainly hope to help other programs elsewhere.

Connect & Inform

We work to raise awareness of SMARCB1-deficient cancers, and SDSC in particular, and to connect the different stakeholders, so patients can get the best care possible and SMARCB1 researchers and oncologists can accelerate progress towards new therapies.

Too many SMARCB1 tumors are misdiagnosed, too many patients are given ineffective treatments and deprived of more promising ones, and too many SMARCB1 researchers lack the patient data and tissue samples they need to accelerate progress.

Let’s connect and move things forward.

Spotlight on SMARCB1-deficient Sinonasal Carcinoma

We have a particular focus on supporting and helping patients with SMARCB1-deficient sinonasal carcinoma (SDSC), the cancer that stole our daughter Ella from us. We work to raise awareness of this particularly aggressive SMARCB1 cancer and to put patients in touch with specialized multidisciplinary teams and SMARCB1 research scientists for guidance and optimal treatment.