‘It makes me feel more connected to the human race’: Epilepsy patients donate live brain tissue for research

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Genette Hofmann, center, is transported in an elevator by medical staff at Harborview Medical Center in Seattle. Credit: Ted S. Warren/AP

Though Genette Hofmann is still using her brain, last month she donated a bit of it — to science.

Hofmann needed the surgery — her Seattle surgeon was looking deep into her brain, where he found the trigger for the epileptic seizures that had disrupted her life for 30 years. But to get there, he teased out a bit of healthy tissue the size of a lima bean, and with her blessing quickly sent it to some researchers, who were eager to study brain cells while they were still alive.

That’s how Hofmann joined a long line of epilepsy patients who’ve helped scientists reveal basic secrets of the brain — knowledge that could pay off in better ways to measure consciousness in brain-injury patients.

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About three-quarters of such donations at the Allen Institute come from epilepsy patients; the rest come from cancer surgeries. The Allen Institute is building an online atlas that makes information on hundreds of human brain cells freely available for study. The institute hopes that will provide a new avenue, beyond brain scans and animal studies, for tackling conditions like Alzheimer’s disease and autism.

Contributing brain cells to science “makes me so proud and so satisfied,” she said. “It makes me feel more connected to the human race.”

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