SMARCB1 Cancer Community
We work to build and foster a global community and conversation around all 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, connect and inform different stakeholders in the SMARCB1 cancer space, raise public awareness of SMARCB1 cancers, and provide individual support and guidance to SDSC (SMARCB1-deficient sinonasal carcinoma) patients.
Connect & Inform
SMARCB1 Hope works 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.
SDSC
(SMARCB1-deficient Sinonasal Carcinoma)
We have a particular focus on supporting and helping patients with SDSC (SMARCB1-deficient sinonasal carcinoma), 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.
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.
Our next research event is planned for 2027. Stay tuned!
Research Funding
SMARCB1 Hope funds 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 and our association with them helps bring great er visibility and funding potential to SMARCB1 cancers, in addition to top-notch international scientific committees for project selection and oversight.
Through collaboration and cross-pollination with research efforts into other solid tumors, we will come to understand the crucial role of epigenetic mechanisms the development and growth of SMARCB1 tumors and find a cure.
