DURHAM, North Carolina: Usually, he just finds a way to move faster, to cram more into the day. But some things cannot be rushed, and that is one of the hardest parts. Josh Sommer waits for the test tubes to warm up to 37 degrees Celsius, for the centrifuge to spin them around, then for the cells inside to settle properly to the bottom.

Last year, one batch took three excruciating months to get right. This cinderblock laboratory inside a Veterans Administration hospital research building is not where the 20-year-old Duke University junior expected to spend much of his college career. He came to Duke to study environmental engineering, not biology.

But for what Josh now needs, a million things need to be done, and running these cultures is one of them. So he is here, growing and nurturing cells, one small but vital part of an effort to help others understand the genetic mechanisms that make them misfire.

So he is patient, because a mistake could set the project back a week, and thousands of lives are at stake. Freshman year starts blissfully, Josh surrounded by new, smart friends. But then terrible headaches start over Christmas break. Josh undergoes testing before returning to school. His mother, Simone, gets the phone call at her home in Greensboro.

A doctor herself, she takes the news from a fellow physician calmly, clinically. Then she hangs up and goes to pieces, as any parent would. She gets in the car and drives to campus with Josh's dog Dassi. ``I'm in Durham and we need to talk,'' Simone tells her son when she reaches him on his cell phone. He is puzzled, then remembers the recent MRI. His heart thumps.

When he meets her at the dorm, she is holding back tears. A cancer diagnosis is devastating, whatever the type. Nearly 220,000 new cases of prostate cancer are diagnosed each year in the United States, 178,000 of breast cancer.

Chordoma, the cancer Josh learns he has is a one-in-a million disease. Just 300 people get the terrible news each year, not even one per day. It strikes all ages, at different spots along the spinal column. The tumors can be removed, but the cancer is relentless. Chemotherapy doesn't work. Life expectancy is around seven years.

The MRI shows Josh's tumor is in a tough spot, in a bone inside his skull. It extends onto his brain stem and wraps around several arteries. There are two surgeries, then weeks of hospital recovery. He and Simone pass the time reading whatever they can about the disease.

There isn't much. The massive apparatus of medical research pharmaceutical companies, foundations, universities, government agencies is utilitarian. High-prevalence diseases are at the front of the line, rare ones like chordoma usually at the back.

But then, a stroke of good fortune. It turns out that the only researcher in the country with a grant to study chordoma happens to be at Duke, working in a VA lab across the street from campus. They meet Michael Kelley in his office.

They talk about the research and where it might go next. Kelley says he's willing to proceed, but he'll need things like equipment and staff to work in his lab. Well, Josh says, you can put me to work. He hasn't taken a biology class since ninth grade, but catches on quickly. In high school, he was named to a top-20 academic all-star team for the whole country.

It's an odd experience, trying to nurture cells to help others figure out how to kill them. As he learns more and more about chordoma, Josh tells his mom the science fascinates him. He just wishes it wasn't life and death. Josh isn't the first person to work to find a cure for his own disease.

For example, a medical student at Louisiana's Tulane University named Andy Martin studied a cancer called sinonasal undifferentiated carcinoma, which is even rarer than chordoma. He died in 2004. This fall, realized that his lab work won't be enough to let him outpace the disease. He and Simone discovered something surprising in their research:

The biggest obstacles to a cure aren't necessarily scientific ones. They're human. Numerous researchers at Duke, in Boston and in Europe are ready to work on chordoma, but don't have the cell lines they need. Meanwhile, the tumors needed to produce those lines are just being thrown away by the surgeons who remove them. Doctors aren't talking to one another.

Various neurosurgeons, orthopedic surgeons, and others have experience removing chordoma and trying to treat it. But the groups have never sat down and compared notes. Funding is certainly scarce. But there is also no basic infrastructure, not even a database of the disparate patients and doctors treating chordoma to organize a clinical trial.

Chordoma doesn't need another lab assistant. It needs a field marshal. Josh and Simone are well-suited to work as a team. Simone raised Josh alone; when he was in high school, they both became mysteriously ill with what turned out to be a debilitating toxic mold infection, which forced them to move and forced Simone to give up her medical practice.

Josh responded by helping design a new way to assess mold contamination. He and Simone traveled to Washington to lobby for tougher mold legislation (Josh says it's impossible to say whether there is any connection between the mold and his cancer).