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At first, he was discouraged by what he learned. Chordoma is rare, with only about 300 cases a year diagnosed in the United States. No chemotherapy drugs are effective, survival rates are grim, and just a handful of scientists in the world were even researching the disease.

But serendipity intervened again with encouraging news. One of the recent papers on chordoma was based on research in the lab of an oncologist named Dr. Michael Kelley -- the only researcher in the country with a current grant to study chordoma.

His location? A five-minute bicycle ride from Sommer's dormitory on Duke's West Campus.

Hard to turn away

When Sommer returned to Duke in the fall of 2006, he contacted Kelley with an unusual request. Despite his lack of scientific training, Sommer wanted to volunteer in the Duke researcher's lab.

Most clinical researchers would not entertain the notion -- it's too time-consuming to train a novice in the precise art of bench science. But Kelley was impressed with Sommer's command of the research on chordoma. The student even mentioned a few papers Kelley himself hadn't seen.

"It was like talking to a colleague," Kelley said. "It was obvious this was something he was serious about doing."

Under Kelley's tutelage, Sommer learned to do genetic research. He now volunteers up to 30 hours a week in Kelley's lab, either growing chordoma cells or analyzing genetic data to identify the genes active in chordoma. Similar research has led to the development of drugs such as Herceptin for breast cancer and Gleevec for leukemia.

But Sommer realized that his efforts in Kelley's lab weren't going to produce results fast enough.

So Sommer and his mother approached Dr. Neil Spector after a talk he gave at the Duke cancer center. Would he start looking at chordoma in his research lab?

Spector, who led an exploratory oncology drug division at GlaxoSmithKline before taking a similar role at Duke, had never heard of chordoma. But he quickly agreed.

"When Josh and Simone came to me," he said, "the two of them were so serious and so impressive, it was hard to say anything but yes." Spector also directs a Duke center aimed at turning scientific discoveries into treatments faster.

Other avenues

After just a few months, Spector's lab found that chordoma has much in common with tumors in breast, lung and colorectal cancer.

Spector said those findings could pave the way for drug trials that would test existing therapies for those more common cancers in chordoma patients. If successful, that could lead to better-focused, more effective chemotherapy for chordoma. Today, chemotherapy is used, but results are hit-or-miss.

Sommer and his mother have also reached beyond Duke. While attending an event in Washington, D.C., last year, Simone Sommer met Dr. Francis S. Collins, the noted genetic researcher who led the mapping of the human genome.

Sommer told Collins about her son and how chordoma was falling through the cracks. She asked for his help in convening an international research meeting on chordoma. What's more, she wanted it to happen within six months.

Once again, the answer was yes. The National Human Genome Research Institute, which Collins directs, and three other National Institutes of Health components co-hosted the meeting in Bethesda, Md., in May. Since then, the Chordoma Foundation has conducted smaller meetings in Los Angeles, San Francisco and Boston. The second annual research meeting is set for April.

The Sommers have also focused on removing some of the most common barriers to progress. Through a foundation they began to drive research, they want to establish what they think is the world's first tissue bank to gather and distribute frozen samples from chordoma tumors to researchers. The foundation already collects and distributes new cell lines started from live tumor tissue, a resource essential for drug testing.

Since his surgery, Josh Sommer has been cancer-free. But he still faces a relentless push against a relentless killer. So when he recently learned that scientists at the National Cancer Institute were working with a leukemia vaccine that targets a protein also produced by chordoma tumors, he couldn't help but ask if they'd add chordoma to their tests.

Their answer, of course, was yes.

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