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Heather Lee (Justin's mom), Jenna Wolfe, Justin Straus, Josh Sommer and Simone Sommer.
updated 2/20/2008 2:23:50 PM ET 2008-02-20T19:23:50
Reporter's Notebook

Josh Sommer is 20 years old. He is well-read, well-spoken, well-educated and well-rounded. He inhales knowledge like it’s oxygen and absorbs information like a sponge. High school was a breeze for him. College meant choosing between MIT, Duke and Stanford (he chose Duke).

He is a rock climber, a soccer player, and ever since he was little, he wanted to be an electrical engineer — or an astronaut.  He’s one of those kids you want to be around in hopes of catching some of his charisma and confidence. Josh can tell you everything about anything he wraps his brain around. What he can’t tell you, however, is when his cancer is going to come back.

Josh was diagnosed with clival chordoma in January 2006, a rare type of cancer that forms at the base of the skull and spine. Once diagnosed, a patient with chordoma lives an average of seven years. And until recently, there were very few places to find any real helpful information for those afflicted.

That was unacceptable to Josh.

And so just days after his surgery to remove the tumor in his skull, Josh decided that he would not take a backseat to a disease that could take his life.

With the help of his mom and physician, Josh spent his entire recovery period reading, learning, studying everything and anything related to chordoma. His will to “outsmart” the disease intrigued him. His will to survive the disease motivated him.

And thus began Josh’s quest to solve the unsolvable — his attempt to cure his own disease. It’s a feat near impossible for a scientist with years of education in biology, much less a college student who had never taken a biology class … unless you count the basic course he took in middle school. Josh was starting from square one, without the luxury of “time” to learn what would soon become his whole life.

Josh, now a junior at Duke, dropped his course load to dedicate his time and energy to a foundation he and his mother founded last year called The Chordoma Foundation. And when I say this was founded by the two of them, I mean just that. Dr. Simone Sommer raised Josh all on her own. The “family” basically consists of the two of them. So when he got sick, she felt like she got sick as well. She has since dropped her practice to focus her full time on the foundation.

A special program at Duke allows Josh to receive credit for his work on the foundation. He still lives on campus (his loose but incredibly important tie to college life, to normalcy) but his days and nights are spent “working.” In addition to the foundation, Josh also spends about 30 hours a week in a science lab with one of the leading chordoma specialists in the country, just looking at the genomic information inside cells that might play a role in treating chordoma. Did I mention Josh knew nothing about biology before this? Now here he is doing real work on real cells in search of a real cure.

When we met up with Josh last week, he was in the middle of a pretty hectic day. A morning at the lab under a microscope; an afternoon working on his foundation; a late lunch meeting with attorneys and medical professionals advising him on legal options once a treatment is found; and then an evening with a group of students who helped him organize a fundraiser for research. After that, he went home and started reading about the next day’s lab work, meetings, conference calls, etc.

Again, Josh is just 20 years old. One of our cameramen quipped to Josh, “When I was 20, I used all my smarts trying to find beer. What you’re doing is remarkable.”

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Here’s a kid who never seems to ask “Why me?”, a kid who never complains, never succumbs to the enormity of what he’s trying to do, never wonders where he’d be or what he’d be doing if he never had a tumor. Here’s a kid who can still find joy in life because he knows if he lets up, if he gives in to chordoma, he can lose the battle. And that’s not an option, he says.

Plus, Josh is working against the clock here. He’s in a race with a disease that doesn’t care if he’s smart or mature or kind or scared, a disease that knows no gender or age or race or strength.

If Josh beats chordoma, that would be wonderful. If he beats chordoma because of a treatment or a cure that he helped discover, he’ll be nothing short of an inspiration to us all.

For more information on Josh's mission, visit The Chordoma Foundation online.

© 2013 MSNBC Interactive.  Reprints

Video: Student researches own disease


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