Our Story
In early 2006 I was enjoying life as a freshman at Duke University studying Civil and Environmental Engineering, when I received news
that changed my life forever. The day after having an MRI for severe, unrelenting headaches my mother came to campus to share the
results: I had a tumor in my head that was pressing on to my brainstem and wrapped around several major arteries.
Like anyone who hears the dreaded words "you have a tumor" I was scared and had no idea what to do next. Fortunately, I was able to
rely on my mothers experience as a physician to navigate the complicated and overwhelming medical system. After searching the country
for specialists, I had extensive surgery to remove the tumor which turned out to be chordoma – a malignant bone cancer that can occur
in the skull and anywhere along the spine.
While recovering from surgery I began searching the internet for information about chordoma, and together my mother and I poured over
dozens of scientific journal articles. It was discouraging to learn that there were no effective drugs to treat chordoma, and that the
average survival for chordoma patients was just 5 years (new data shows survival is closer to 7 years). Unwilling to accept these grim
statistics, we resolved to do everything in our power to bring about a cure for chordoma. For me, this is a high-stakes race to outrun
my disease.
As I continued to comb the medical literature, I discovered that one of the world's leading chordoma researchers - Michael Kelley, MD -
was right in my backyard at Duke. Shortly after returning to school, my mother and I met with Dr. Kelley to lay out our vision to rapidly
advance chordoma research and to see what we could do to support his projects. The next week I began working in Dr. Kelley's lab. Since
then I have been conducting research using a number of different techniques to search for genes that might play a role in causing chordoma.
Working in the lab, I quickly realized the enormity of the challenge to cure chordoma, and that to have a real shot at success would
require a massive, coordinated team effort involving scientists and doctors working hand-in-hand with patients towards this common goal.
To build the team necessary to cure chordoma, my mother, Dr. Simone Sommer, and I contacted the leading chordoma researchers throughout
the world and experts in related areas of cancer research. We found that overwhelmingly researchers were eager to study chordoma, but
were hindered by three key factors: 1) limited access to tissue and cell lines, 2) scarce funding, and 3) little communication and
collaboration among and between physicians and scientists.
To overcome these barriers and accelerate chordoma research in a coordinated manner, we incorporated the Chordoma Foundation on February
9th, 2007. Our mission is to rapidly develop effective treatments and ultimately a cure for chordoma, while improving the diagnosis,
treatment, and quality of life for people affected by this devastating bone cancer. With the input of a diverse group of experts from
around the world, the Foundation has created a roadmap for developing new effective treatments for chordoma, and serves as the engine to
drive this plan forward.
The Chordoma Foundation gives me hope that new treatment's will be developed in time to save my life, and the lives of the many chordoma
patients I have come to call friends. To succeed, the Foundation needs your support and the support of the entire chordoma community. I
view every chordoma patient, family member, doctor and research as team-mates in the search for a cure. I welcome you to join our efforts
in any way you can. Working together, we can turn our dreams for a cure into reality.
Josh Sommer
Cofounder