Our Mission is to improve the lives of chordoma patients by rapidly developing effective treatments and ultimately a cure for this devastating disease. We lead a coordinated international research effort to accelerate a cure, while improving the diag... Read more
Our Mission is to improve the lives of chordoma patients by rapidly developing effective treatments and ultimately a cure for this devastating disease. We lead a coordinated international research effort to accelerate a cure, while improving the diagnosis, treatment, and quality of life for people affected by chordoma. We serve as a bridge between patients, doctors, researchers, drug companies, government and funding agencies, representing the interests of those with chordoma, and instilling a sense of urgency in the treatment development process.
Chordoma is a slow growing, relentless bone cancer that occurs in the head and spine in people of all ages. Chordoma is typically resistant to chemotherapy and radiation, and is prone to multiple recurrences. The average survival after diagnosis is 7 years; a statistic we are determined to improve.
Who we are The Chordoma Foundation is a 501(c)(3) nonprofit organization dedicated to curing chordoma. It was incorporated in February, 2007 by Dr. Simone Sommer, and her son Josh, after he was diagnosed with a chordoma in 2006, during his freshman year at Duke University. Since his diagnosis, Josh has worked in an oncology lab at Duke to find his own cure. Currently, we operate with seven volunteer board members, numerous scientific and medical advisors, and the support of volunteers. Our dedicated board members have extensive experience in medicine, public health, nonprofit management, entrepreneurship, venture capital, technology transfer, rare-disease advocacy, and law.
Our approach We take a big-picture, systems-based approach to the problem of curing chordoma, ensuring that time and resources are focused to achieve maximum results as quickly as possible. With the input of a diverse group of experts from around the world, we have created a roadmap for developing new effective treatments for chordoma, and serve as the engine to drive this plan forward. Beyond awarding grants, we take an active role in every aspect of the research process by formulating research priorities, recruiting the best researchers, initiating new projects, brokering collaborations, and breaking down barriers to progress. We are working to overcome major research obstacles by 1) fostering communication and collaboration among and between physicians and scientists 2) providing access to chordoma tissue and cell lines, and 3) proactively funding research.