About a month ago, Judith Hansen woke up in the middle of the morning and found herself thinking about her father’s mind.
Her father, Morrie Markoff, was an unusual man. At 110, he was considered the oldest person in the United States. His brain was also unusual, even after he recovered from a stroke at age 99.
Although he left school after eighth grade to work, Mr. Markoff became a successful businessman. Later in life, his curiosity and creativity led him to the arts, including photography and sculpture made from scrap metal.
He was a healthy centenarian when he showed his work in a gallery in Los Angeles, where he lived. At the age of 103, he published a memoir called “Keep Breathing.” He blogged regularly, studied The Los Angeles Times daily, reviewed articles in Scientific American and followed national news on CNN and “60 Minutes.”
Now he was near death, enrolled in a home hospice. “In the middle of the night I thought, ‘Dad’s brain is so amazing,'” said Mrs. Hansen, 82, a retired librarian in Seattle. “I went online and looked up ‘brain donation.'”
Her search led her to a National Institutes of Health webpage, which explained that NeuroBioBank, founded in 2013, collected postmortem human brain tissue to advance neurological research.
Ms. Hansen contacted the non-profit organization through the site Brain donor projectIt promotes and facilitates donations through a network of university brain banks, which distribute preserved tissue to research teams.
Tish Hevel, the project’s founder, acted quickly and connected Ms. Hansen and her brother to the brain bank at the University of California, Los Angeles. Brain donors can have neurological and other diseases, or they can have healthy brains, like Mr. Markoff’s.
“We’re going to learn so much from him,” Ms. Hevel said. “What is it about these superagers that allows them to function at such a high level for so long?”
Many older Americans have checked the box on their driver’s licenses to allow organ donation for transplants; some have also looked into or arranged whole-body donations to medical schools. Fewer people know about brain donation, Ms. Hevel said.
The campaign to boost it began about a decade ago, when “new techniques emerged that allowed for astonishing quantitative analyses” of brain cells, said Dr. Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke, which manages the NeuroBioBank. Researchers use the material to study a range of brain diseases and psychiatric disorders.
But “these new techniques require that the brain be removed quickly and then frozen,” because “brain tissue begins to degrade within hours,” Dr. Koroshetz said.
Before the NeuroBioBank was established, some universities were already collecting donated brains, but the process “was scattered across the country,” he said. “Access to tissue was not centralized.”
Ms. Hevel faced similar obstacles when her own father died of Lewy body dementia in 2015. “It was a terribly complicated process then,” she said. The Brain Donor Project now works to educate the public about the importance of brain donation and the best way to arrange it.
While some neurological studies rely on scans and computer simulations, there is no substitute for human tissue, Dr. Koroshetz said: “It’s like the difference between looking at a cartoon and a Rembrandt.”
Now, each of the six university brain banks affiliated with NeuroBioBank receives an average of 100 donations a year, enabling research on topics ranging from Parkinson’s disease and schizophrenia to the effects of military explosions. The Brain Donor Project, which works with the NIH, has registered 23,000 donors since its founding in 2016. “We need more,” Dr. Koroshetz said.
Brain donation remains a sensitive topic, he acknowledged: “Some families are very uncomfortable talking about it,” and some religious and ethnic groups find it objectionable. When he led research on Huntington’s disease decades ago and raised the issue with patients, “it took years of people asking questions before they felt comfortable signing a form.”
How does it work? The Brain Donor Project connects potential donors with NIH-affiliated university brain banks. “Don’t try to pick a brain bank yourself,” Ms. Hevel said. They have different requirements and protocols, and the project connects a donor with the right one.
The donor signs the necessary paperwork, or a family member or medical team member can sign on behalf of the donor. The family or medical staff must notify the bank immediately after the donor dies.
At the funeral home or mortuary where the body is being kept, a “recovery specialist,” often a pathologist or coroner, removes the brain from the back of the skull to prevent deformity (so the deceased can still have an open-casket funeral) and takes the brain to a brain bank for freezing and distribution to research labs.
“I’ve heard from so many families that even with great loss, there is a sense of comfort and solace in knowing that something positive can come out of it,” Ms. Hevel said.
There is no charge to families, who can choose to receive a neuropathology report a few months later. It can be helpful in alerting family members to possible conditions or abnormalities.
Of course, there are other ways to treat your body as an inheritance. Under the Uniform Anatomical Gift Act, almost any adult can become an organ donor when applying for or renewing a driver’s license, or by registering with an online state registry. (If you agree to donate organs for transplantation, this does not apply to donating brains for neuroscience research.)
More than 100,000 Americans are on waiting lists for transplantsthe largest number hope for a kidney.
It’s “a different world” when people want to donate their bodies to medical schools to train health care professionals, says Sheldon Kurtz, a law professor at the University of Iowa who helped draft the current organ donation law.
In that case, donors must contact schools directly, and they can be picky about which agencies they accept and under what conditions. For example, some will not work with out-of-state donors or will accept “next-of-kin donations” arranged by families unless the donor has signed the paperwork in person.
Sometimes it is possible to donate both a brain and a whole body. “There is no set law for these arrangements,” Mr. Kurtz said. “It is really a contract between the donor and the institution.”
In 2021, Joy Balta, chair of the American Association for Anatomy’s Committee on Body Donation, and colleagues 72 medical schools examined who received more than 26,000 whole-body donations annually. About 70 percent of respondents reported receiving enough donations for research; a few had more than they needed.
But their needs are growing, Dr. Balta said in an interview. Improved preservation techniques mean that human cadavers are now used not only to teach anatomy, their traditional purpose, but also to train surgeons and other clinicians.
For the 110-year-old Markoff, his children saw his brain, more than his body, as a gift from which others could benefit.
“There’s a secret to it,” Dr. Koroshetz agreed. “In very old people, it’s rare to have a brain that doesn’t have neurological pathology, but 38 percent of them don’t have cognitive problems. The circuits are still working, even when the pathology is severe. What causes that resilience?”
Mr. Markoff died at home on June 3, just two days after his daughter’s predawn unveiling. Because the Brain Donor Project had immediately put Ms. Hansen in touch with UCLA, “they had his precious brain properly stored within four hours of his death,” Ms. Hevel said.
That was a comfort.
“We were so happy that Dad could be useful,” Mrs. Hansen said. “Isn’t that what we all want? To have a purpose?”
