Overview
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.
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.
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 many 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.
View our fact sheet