Josh Sommer is incoming executive director of the Chordoma Foundation, which he co-founded with his mother, Dr. Simone Sommer, after he was diagnosed with a clival chordoma in 2006.

Josh was a freshman at Duke University studying environmental engineering when he was diagnosed. Soon after, Josh joined the lab of Dr. Michael Kelley, a Duke oncologist studying the genetic basis of chordoma. To support his work in the lab, Josh switched majors to a self-designed bioengineering curriculum focused on modeling and solving biological "problems" that lead to disease.

After finishing his junior year in May 2008, Josh was awarded a two-year Echoing Green fellowship for social entrepreneurs, and subsequently has taken a leave of absence from Duke to lead the Chordoma Foundation as full-time executive director.

To complement his work for the Chordoma Foundation, Josh has joined Duke's Program on Global Health and Technology Access as a Fellow in Strategic Philanthropy and Health. In addition, Josh continues to lead research projects in Dr. Kelley's lab, and helps coordinate collaborations with research labs in eight countries.

A brief excerpt of our interview follows. Listen to the podcast and read the full transcript at the Social Citizens blog.

JULIA ROCCHI: Hi! This is Julia Rocchi with the Case Foundation. Today we're interviewing Josh Sommer. He's the executive director of the Chordoma Foundation. You can find him at ChordomaFoundation.org. Josh, thank you so much for speaking with us today. I really appreciate it. I guess I am going to ask a really basic question first. What is chordoma, for people who may not know what it is?

JOSH SOMMER: Absolutely. Chordoma is a type of bone cancer that can occur anywhere along the spine, from the head all the way down to the tail bone. It arises from a tissue called the notochord, which is an embryonic structure that is actually the precursor to the spinal column. As the spinal column is forming, the notochord simultaneously disintegrates, but the process isn't exactly clean, and sometimes you end up with little bits of notochord lodged inside the vertebrae or inside the skull, and we don't know why, but sometimes those bits of notochord end up turning into a malignant tumor called chordoma.

It affects about 300 people a year in the United States. So the instance is about one in a million, about one new case diagnosed each day. It affects people of all ages, from children to the elderly, men, women. So it really doesn't discriminate at all.

It oftentimes comes lumped into the category of brain or CNS tumors because it is so intimately involved in the spinal chord and the brain.

JULIA ROCCHI: So, given the severity, I am assuming treatment options are not likely available for it?

JOSH SOMMER: Yeah. Basically, surgery is the best shot. Oftentimes radiation is used as well, but other than that, there is not really any effective chemotherapy. The average survival is about seven years, and because of where the tumors are located, treatment, especially surgery and radiation, are very, very difficult. Basically, you have to get highly specialized treatment from physicians who are really experienced in treating chordoma. But, you can imagine with 300 cases a year, there aren't a whole lot of people who really specialize in it.

JULIA ROCCHI: Now, the interesting thing is you have a more personal connection to chordoma than just being executive director of the foundation. Can you tell us your personal story?

JOSH SOMMER: Yeah, absolutely. So, right after my freshman year, I was actually diagnosed with the chordoma. I had discovered that I had a tumor in the center of my head. It was just completely shocking. A tumor is the most devastating experience you can imagine. The only other thing I can liken it to is almost like after 9/11, just the feeling of total shock and not knowing what to do next.

But I went into surgery, not knowing what the tumor was, just knowing that I had a mass in the center of my head. If you would draw a line from ear to ear in the back of my nose, right in the very center, in one of the most difficult locations to get to.

Waking up from surgery, I remember my surgeon coming into my hospital room and telling me that it, in fact, turned out to be a chordoma, which is what I was hoping it wouldn't be. He told me that chordomas were malignant and that I was going to have a long road ahead, but he also told me that he thought good things were going to come out of it. So I have kind of taken that to heart and tried to make good things come out of my diagnosis.

I didn't know really anything about chordoma at the time, but after my surgery, as I was recovering, I started reading everything I possibly could. Luckily, my mother is a physician. So she is able to help me make sense of the medical literature.

Being a Duke student was a real advantage because I had access to the journal articles that the library subscribed to, and so I was able to really educate myself and read the entire body of literature almost around chordoma and kind of understand what the state of the science was.

So, as I was educating myself, I came to realize that there weren't many effective treatment options, that there was this average seven-year survival, which my mother and I essentially resolved not to accept and from there just became determined and dedicated to try to find a cure.