About a month ago, Judith Hansen woke suddenly before dawn and found herself thinking about her father's brain.
Her father, Molly Markoff, was an unusual man: He was thought to be the oldest person in the United States at 110 years old, and even after recovering from a stroke at age 99, his brain was unusual.
Markov left school after the eighth grade to go to work, but became a successful businessman, before his curiosity and creativity led him into the arts, including photography and sculptures made from scrap metal.
The Los Angeles resident was a healthy 100-year-old when he was showing his work in galleries, and published a memoir called “Keep Breathing” at age 103. He blogged regularly, read the Los Angeles Times daily, discussed articles in Scientific American, and followed national news on CNN and “60 Minutes.”
“In the middle of the night, I thought to myself, 'My dad's brain is incredible,'” says Hansen, 82, a retired Seattle librarian. “I went online and searched 'brain donation.'”
Her search led her to a webpage explaining that the National Institutes of Health's NeuroBiobank, established in 2013, collects postmortem human brain tissue to advance neurological research.
Through the site, Hansen contacted the Brain Donor Project, a nonprofit organization that promotes and simplifies brain donation through a network of university brain banks and distributes preserved tissue to research teams.
The project's founder, Tish Hebel, responded quickly, referring Hansen and her siblings to the University of California, Los Angeles brain bank, where donors could have neurological or other disorders or, like Markov, healthy brains.
“We can learn a lot from him,” Hebel said. “What enables superagers to operate at such a high level for such a long time?”
While many older Americans have a section on their driver's licenses that allows them to donate their organs for transplant, and some are considering or arranging for whole-body donation to medical school, fewer people know about brain donation, Hebel said.
The campaign to encourage the NeuroBiobank began about a decade ago, when “new technologies emerged that allowed for incredible quantitative analysis” of brain cells, said Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, which manages the bank. Researchers use the material from the NeuroBiobank to study a variety of brain and psychiatric disorders.
But “these new techniques require the brain to be harvested quickly and then frozen,” Dr. Koroshetz said, “because brain tissue begins to deteriorate within a few hours.”
Before the NeuroBiobank was established, several universities collected donated brains, but the process was “distributed across the country,” he said, “and there was no centralized access to the tissue.”
Hebel encountered such an obstacle when her own father was dying of Lewy body dementia in 2015. “It was a very complicated process at the time,” she said. Now, the Brain Donor Project works to educate the public about the importance of brain donation and how best to arrange it.
While some neurological studies rely on scans and computer simulations, there's no substitute for human tissue, Dr Koroshetz says: “It's like the difference between looking at a cartoon and looking at a Rembrandt painting.”
Currently, NeuroBiobank's six academic brain banks average 100 donations a year each, enabling research into topics ranging from Parkinson's disease and schizophrenia to the effects of military explosions. The Brain Donor Project, in collaboration with the NIH, has enrolled 23,000 donors since its launch in 2016. “We need more donors,” Dr. Koroshetz said.
Brain donation remains a sensitive topic, he acknowledged: “It's very awkward to talk about with some families,” and some religious and ethnic groups feel uncomfortable about it. When he led research into Huntington's disease decades ago and raised the subject with patients, “it took years of questioning before patients felt comfortable signing the paperwork,” he said.
How does it work? The Brain Donor Project connects potential donors with brain banks at NIH-affiliated universities. “Don't try to pick a brain bank yourself,” Hebel says. Each brain bank has different requirements and procedures, and the project connects donors with the right brain bank.
The donor can sign the necessary paperwork themselves, or a family member or member of the medical team can sign on their behalf. The family or medical staff must notify the bank as soon as the donor dies.
At the funeral home or mortuary where the body is kept, a “brain recovery specialist,” who is often a pathologist or coroner, removes the brain from the back of the skull in a way that preserves the body's disfigurement (so the deceased can have an open casket and funeral) and delivers it to a brain bank for freezing and distribution to laboratories.
“We've heard from many families that even in the face of great loss, they find solace and comfort in knowing that something good will come out of it,” Hebel said.
There is no cost to the family, and neuropathology reports can be received several months later, which may help inform relatives of potential disorders or abnormalities.
Of course, there are other ways to count your body as a legacy. Under the Uniform Anatomical Gift Act, nearly any adult can become an organ donor when they get or renew their driver's license, or by signing up for their state's online registry. (Agreeing to donate organs for transplantation does not include donating your brain for neuroscience research.)
More than 100,000 Americans are on a transplant waiting list, most of them hoping to get a kidney transplant.
Sheldon Kurtz, a law professor at the University of Iowa who helped draft the current bill on organ donation, said it's “another world” that people would want to donate their bodies to medical schools to help educate health care workers.
Donors must contact the school directly, and the school can be selective about which groups it accepts and under what conditions. For example, some schools may refuse to do business with out-of-state donors or not accept “next-of-kin” donations arranged by a family member unless the donor personally signs the paperwork.
In some cases, people can donate both their brains and their whole bodies. “There's nothing in law that specifies these arrangements,” Kurtz says. “It's really a contract between the donor and the institution.”
In 2021, Joy Barta, chair of the American College of Anatomists' Committee on Cadaver Donations, and her colleagues surveyed 72 medical schools that receive more than 26,000 whole-body donations per year. About 70% of respondents said they receive enough bodies for research, but a few receive more than they need.
But demand is growing, Dr. Barta said in an interview, as improved preservation techniques mean that human cadavers are being used not just for their traditional purpose of teaching anatomical material, but also to train surgeons and other clinicians.
But to the 110-year-old Markov, his children saw his brain, rather than his body, as a gift that could be of use to others.
“Therein lies the secret,” agreed Dr. Koroshetz. “In very elderly people, it's rare for the brain to have no neurological lesions, but 38% of them have no cognitive impairment. Even when the lesions are severe, the circuits continue to function. What gives rise to that resilience?”
Markoff died at home on June 3, just two days after his daughter learned of the brain's existence in the predawn hours. The Brain Donor Project quickly connected Hansen with UCLA, so “his precious brain was properly stored within four hours of his death,” Hebel said.
That was comforting.
“We were so happy that he was able to be of service,” Hansen said. “Isn't that what we all want? To have a purpose?”
