Genette Hofmann is very much alive. But in January, she donated her brain to science—a piece of it, anyway. She did it in hopes of helping others who do or will suffer from the same condition she has long lived with.
For 30 years, Hofmann has suffered with epilepsy. The disease disrupts the brain’s electrical activity. Epilepsy produces seizures that involve strange behaviors, emotions, and sometimes loss of consciousness. Most people with epilepsy don’t need surgery: They control seizures with medicine. But when surgery is required, researchers sometimes ask for a chance to conduct other brain studies.
Dr. Andrew Ko, Hofmann’s surgeon, located the tissue triggering her seizures. He wanted to operate. But to access the problem area, Ko needed to remove a lima-bean-sized plug of healthy brain tissue. Would Hofmann allow researchers to examine that piece while it was still “alive”?
With Hofmann’s blessing,hospital workers rushed those brain cells to the Allen Institute, a center for brain research. The tissue traveled in a cooler rigged with artificial brain fluid and oxygen. At the lab, researcher Herman Tung readied the brain tissue for a series of experiments by slicing it into thin sheets.
Researcher Katherine Baker found a single brain cell and recorded its electrical activity. She injected dye to reveal the shape of the cell’s neurons. She also removed the cell’s nucleus to discover which genes were turned off and which were turned on.
Hofmann joins a long line of epilepsy patients who’ve helped scientists reveal some secrets of the brain, including memory, emotion, and everything we call “the self,” says Christof Koch. He is chief scientist at the Allen Institute. “Seizures have taught us more about brain and the mind and the relationship between the two than any other disease,” Koch says.
Two weeks after Hofmann’s surgery, she reports: “No seizures.” Part of her brain is gone, but she doesn’t feel anything’s missing. In fact, happy memories have surfaced, “things I haven’t thought of since I was a girl.”
About three quarters of all brain donations at the Allen Institute come from epilepsy patients. The rest are from cancer surgeries. With the help of generous donors like Hofmann, the institute hopes to help tackle Alzheimer’s disease, autism, and other disorders.
For Hofmann, the decision to contribute to the study went beyond her own epilepsy. She spent years caring for a grandmother with dementia. She saw her brain tissue donation as “my chance to make a difference,” calling it “the easiest decision I’ve ever made.”