In 2005, Josh Sommer, then 18, had just started college life at Duke University when he found out he was dying.
"It was just utter shock," Sommer said. "I guess the best way I could describe it is the same feeling I felt after 9/11. Just total helplessness, hopelessness, not knowing what I should do next. I have a tumor in my head and not only that, it's in a difficult location within the center of my head."
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A 10-hour operation removed the growth. A biopsy then revealed it was cancerous -- a little-known disease called chordoma.
Chordoma strikes anywhere along the spine or skull. It's so rare that only about 300 new cases are diagnosed each year, and few scientists are interested in working on it. The cancer is also so relentless that there is no cure. The average life expectancy of people with chordoma is about seven years.
"I distinctly remember my surgeon coming into the hospital room at 12 o'clock at night and saying it turned out to be a chordoma, which was not what we were hoping for," Sommer said. "We hoped it would be something benign. I've done enough reading that I knew that a chordoma could be the worst of the things that it could have been."
Sommer was devastated but soon discovered there was one laboratory in the country that focused on chordoma research. It was right on the other side of campus at the Duke University Medical Center. But even research there was moving slowly.
"I just became determined to try and beat that," he said. "I realized that I had this seven-year window of time to try and advance the field."
Sommer, an engineering student with only a high school biology class under his belt, began working 30 hours a week in the lab, growing and studying chordoma cells and writing up his findings. But that was just the beginning.
With the help of his physician mother, he created the Chordoma Foundation.
"[My mother and I] realized that there were these barriers that was holding up research," he said. "We found that there was a lot of people interested in studying chordoma but they were just impeded by all of these barriers. So my mother and I decided that we need to do something about this and that's the idea of where the foundation came from."
Sommer, whose efforts where first reported on in the Raleigh News and Observer, also raised $300,000 for research and has set a goal to raise $3 million by 2009. He is starting a national "bio-bank" to collect chordoma tumors and harvest their cells.
He then staged the first Chordoma Research Conference, which he said was "probably the most gratifying experience of my life." Sommer cajoled 53 scientists from around the world to come to Maryland to share information and resources to fight the disease.
"We had handpicked these people, because we wanted them there and we wanted their expertise and almost everyone there, I had read their papers," Sommer said. "It was just great. To see so many researchers, who many of them have never studied chordoma before, get so enthusiastic about chordoma."
Neil Spector of the Duke University Medical Center said, "This is very rare. I have a lot of people come to me and want to have their disease cured but I rarely see anyone who understands how to get to that point like Josh."