Clear Cell Sarcoma Foundation

Clear Cell Sarcoma Foundation began when our daughter was prescribed a treatment for another sarcoma that has been shown to spread the CCS. This is the standard "go to" for many peds patients and we aim to change that by being the hub of information for doctors, scientists and patients. We do this work to not only bring awareness to this ultra rare cancer but to save lives through educating the medical world, supporting tissue collection and inspiring research that will lead to a cure. We aim to create the foundation for a better future for CCS and ultra rare sarcoma without a voice.

Clear Cell Sarcoma Foundation (Formerly Sara's Cure) funded repurposed drugs testing on clear cell sarcoma cell lines to find a combination that will work on this horrible cancer. We are establishing a patient driven and patient reported natural history documentation to compile critical information for doctors, scientists and patients to direct how to treat and how NOT to treat for best outcomes. Keeping patients alive through best practices like surgery and not unproven random treatments allows patients to direct their treatments and to engage more and take on the roles of advocates within our organization. Our CCS family is empowered and engaged. By keeping this organization running smoothly and providing a place for the patient to be "seen and heard" Clear Cell Sarcoma will be launched into the realm of public research where discoveries are made.

Our capabilities come from our financial supporters and patients through the funding we receive that allows us to get in front of the regulators, attend conferences with drug developers and advise the bodies that oversee medical research in areas of unmet need. All of this combined gives the patient community a place to be seen and heard. Clinicians have awakened to the CCS families existence and they hear the patients voices through our constant contact and participation in all types of sarcoma based opportunities like conferences and coalitions. Being the only patient focused advocacy organization for CCS brings the world of patients together in one place and makes our voice too loud to ignore. No one should hear the words "your child has clear cell sarcoma and we don't have a treatment" ever again.

Clear Cell Sarcoma Foundation has awakened the research and science world to to our rare cancer type. In our short existance we have convinced the FDA to work with us and a small drug company on creating a first ever CCS trial based on preclinical evidence in the lab. We are funding the patient travel. We offer patients a platform to voice their concerns, struggles, treatments, reports and more. We are an organization that lets them know that although their cancer is Ultra Rare they are not alone. We facilitate peer to peer support so no patient is isolated and led to believe they are alone. We have created a seat at the sarcoma table with the pharmaceutical world, oncology world, rare disease community and the governmental regulatory agencies by participating in councils and task force meetings as well as holding leadership positions in sarcoma. We have been included on a grant with The Broad Institute to create critical research materials for the scientific community. We have built the momentum to find the cure. Our future goals are to keep supporting advancing less toxic treatments and supporting other ultra rare sarcoma subtypes like we have been supported