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 recovery in the hospital. 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.
Josh later cuts back on his research activities in favor of the Chordoma Foundation which he and his mother founded to better organize research into chordoma. The article also mentions a few other patient-researchers.
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