About a month ago, Judith Hansen woke up in the early morning hours thinking about her father’s brain.
Her father, Morrie Markoff, was an unusual man. At 110, he was thought to be the oldest person in the United States. His brain was also unusual, even after recovering from a stroke at 99.
Although he dropped out of school after the 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 scrap metal sculpture.
He was a healthy centenarian when he exhibited his work in a gallery in Los Angeles, where he lived. At 103, she published a memoir called Keep Breathing. He blogged regularly, contributed daily to the Los Angeles Times, discussed articles in Scientific American, and covered the national news on CNN and “60 Minutes.”
Now nearing death, he was enrolled in hospice care. “In the middle of the night, I thought, ‘Dad’s brain is so wonderful,'” said Ms. Hansen, 82, a retired librarian in Seattle. “I went online and looked up ‘brain donation’.”
Her search led to a National Institutes of Health website that explained that its NeuroBioBank, founded in 2013, collected postmortem human brain tissue to advance neurological research.
Through the website, Ms Hansen contacted the non-profit Brain Donor Project. It promotes and simplifies donation through a network of university brain banks, which distribute preserved tissue to research groups.
Tish Hevel, the project’s founder, quickly responded, putting Ms. Hansen and her brother in touch with the brain bank at the University of California, Los Angeles. Brain donors may have neurological and other diseases, or they may have healthy brains, like Mr. Markoff’s.
“We’re going to learn so much from him,” Ms. Havel said. “What is it 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 considered or arranged for whole-body donations to medical schools. Fewer people know about brain donation, Ms. Hevel said.
The campaign to encourage it began about a decade ago, when “new techniques came to the fore that allow amazing quantitative analysis” of brain cells, said Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, which manages NeuroBioBank. Researchers use its material to study a range of brain diseases and psychiatric disorders.
But “these new techniques require the brain to be obtained quickly and after freezing,” because “brain tissue begins to deteriorate within hours,” Dr. Koroshetz said.
Before NeuroBioBank was founded, some universities were already harvesting brains from donations, but the process “was scattered all over the country,” he said. “Access to the web was not centralized.”
Ms Hevel encountered such obstacles when her father was dying of dementia with Lewy bodies in 2015. “It was a terribly complicated process at the time,” she said. The Brain Donor Project is now working to inform the public about the importance of brain donation and how best to arrange it.
Although some neurological research relies 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 averages 100 donations a year, enabling research into topics from Parkinson’s disease and schizophrenia to the effects of military blasts. The Brain Donor Project, in partnership with the NIH, has registered 23,000 donors since its inception in 2016. “There is a need for more,” said Dr. Koroshetz.
Brain donation remains a sensitive topic, he admitted: “For some families, it’s very uncomfortable to talk about,” and some religious and ethnic groups find it unacceptable. When he led research into Huntington’s disease decades ago and raised the issue with patients, “it would take years of people asking questions before they felt comfortable signing a form.”
How does it work; The Brain Donor Project connects prospective donors with NIH-affiliated university brain banks. “Don’t try to choose a brain bank on your own,” said Ms Havel. They have different requirements and protocols and the project will match a donor with the right one.
The donor signs the necessary documents or a relative or member of the medical team can sign on behalf of the donor. The family or medical staff must notify the bank immediately after the donor’s death.
At the funeral home or mortuary where the body is kept, a “recovery specialist”, often a pathologist or medical examiner, removes the brain from the back of the skull to avoid distortion (so the deceased may still have an open casket funeral) and delivers it to a brain bank for freezing and distribution to research laboratories.
“I have heard from so many families that even in the face of great loss, there is a sense of comfort and comfort, knowing that something positive can come from it,” Ms Hevel said.
There is no cost to families, who can choose to receive a neuropathology report a few months later. It may prove useful in alerting relatives to possible disorders or abnormalities.
There are other ways to think of one’s body as heritage, of course. Under the Uniform Organ Donation Act, almost any adult can become an organ donor when obtaining or renewing a driver’s license or by signing up for an online state registry. (The agreement to donate organs for transplantation does not include brain donation for neuroscience research.)
More than 100,000 Americans are on transplant waiting lists, the largest number hoping for a kidney.
It’s “a different world” when people want to donate their bodies to medical schools to help train health professionals, said Sheldon Kurtz, who teaches law at the University of Iowa and helped draft the current donation legislation. instruments.
In this case, donors must contact the schools directly and can be selective about which agencies they will accept and under what conditions. Some won’t work with out-of-state donors, for example, or won’t accept “relative donations” arranged by families if the donor hasn’t personally signed the paperwork.
Sometimes it is possible to donate both a brain and a whole body. “There is no specific legislation for these arrangements,” Mr. Kurtz said. “It’s really a contract between the donor and the foundation.”
In 2021, Joy Balta, chair of the American Anatomical Association’s body donation committee, and colleagues surveyed 72 medical schools that annually received more than 26,000 whole-body donations. About 70 percent of respondents reported receiving enough donations for research. some 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 for teaching anatomy, their traditional purpose, but also to help train surgeons and other clinicians.
For Mr. Markoff, the 110-year-old man, however, his children saw his brain, more than his body, as a gift that could benefit others.
“A secret sits there,” agreed Dr. Korosets. “In the very old, it is rare that a brain does not have neurological pathology, but 38 percent of them do not have cognitive difficulties. The circuits still work, even when the pathology is severe. What causes this resilience?’
Mr Markoff died at his home on June 3, just two days after his daughter’s pre-dawn revelation. Because the Brain Donor Program had immediately connected Ms. Hansen with UCLA, “his precious brain was properly stored within four hours” of his death, Ms. Hevel said.
This has proved a consolation.
“We felt so happy that dad could be of use,” Ms Hansen said. “Isn’t that what we all want? To have a purpose?’
