Why You Might Want to Donate Your Brain to Science Organ donor programs do not include brains, creating a tissue shortage that impedes research into Alzheimer's, Parkinson’s and concussions

Imagine a piece of paper.

On one side, draw scientists studying cures for Parkinson’s and Huntington’s diseases, dementia, the effects of concussions and more.

On the other side, draw generous patients and families potentially offering newly deceased human brains for the scientists to work on.

But there’s no connection between these groups.

That’s roughly what Tish Hevel envisioned when her father, Gene Armentrout, died from Lewy body dementia in 2015.

“Our father had always wanted to donate his body, so we knew he would want to donate his brain as well. And we knew scientists needed tissue,” she later told the American Academy of Neurology. “But the process of donating was complicated.”

For one thing, “people didn’t realize the need,” she said. “People wanted to do it; they just didn’t know how.” For another, then and now, many assumed brain donations for research equated to organ donation to living recipients. “It doesn’t,” she said.

Why People Donate

In 2016, Hevel launched the Brain Donor Project to make that missing connection between prospective donors and researchers. Working with such nonprofit organizations as the Parkinson’s Foundation and the Alzheimer’s Association as well as hospice groups and social workers, they began educating the public about the need for brain donations and promoting easier ways to accomplish it.

The National Institute on Aging stresses that a diversity of human brains is needed for research — including those that are old and young, completely healthy and diagnosed with a disorder. After all, scientists need control subjects for comparisons.

At Boston University’s UNITE Brain Bank, family members often offer the story behind a donation. Shannon Albarelli, widow of Mike Albarelli, told the related Concussion Legacy Foundation that her husband, a college athlete and family man, had died in a fall at 38 after a few years of baffling symptoms. Researchers confirmed that Albarelli suffered from chronic traumatic encephalopathy, or CTE.

So Little Is Understood

Another brain at UNITE came from Rowan Stringer, of Ontario, Canada, a high school rugby player who suffered multiple concussions in one week without telling her parents or coaches. A coroner’s inquest concluded the 17-year-old died of “second impact syndrome,” which is when someone suffers a second head injury before a prior injury can fully heal. Stringer’s death led her family to push for Rowan’s Law, which requires annual concussion education for Ontario athletes, parents, coaches and team officials.

And living donors? Once Hevel inspired Don Demers Sr. of Midland, New Jersey, to offer his brain for research, many of his family members signed up, too. Demers Sr. had Parkinson’s disease, and “he knew that the brain matter is the most important property for researchers,” son Don Jr. told a local TV news interviewer last year, after his father passed. He said that the donor movement “has a spiral effect of increasing research not just for Parkinson’s but all these different neurological diseases.”

“I want to be the brains behind healing for others,” Mike Nixon wrote in the spring 2023 magazine of the University of Texas Health Science Center at San Antonio. Nixon, diagnosed with a super-rare neurodegenerative disease, had already lost his sight and significant movement to the illness.

“I felt a calling to become a research subject,” he wrote. “If I were going to make a genuine difference, I needed to find a postmortem home for my brain and spinal cord.”

So Nixon arranged his donation with the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at UT Health San Antonio. After all, he noted, “there is more than cancer and heart disease in the world of medical science.”

Your Questions Answered

Because deterioration happens quickly, the key to brain donation for scientific research is speed at time of death. The key to speed is telling relevant parties ahead of time — spouses and relatives, physicians or hospice workers and then the funeral home.

“By the time someone looks at a will or end-of-life documents, it’s too late,” Hevel said. “The best thing to do is to make arrangements, talk with family and keep the 24/7 phone number on hand.”

At death, a responsible party should contact the chosen brain bank within a couple of hours. According to the Brain Donor Project, the brain bank will coordinate with a local facility — often the funeral home — to have an expert remove the brain from the back of the head and transport it to the brain bank. “The body is released to the family to proceed with funeral or cremation,” according to the Brain Donor Project. Any visitors will see no sign of the procedure.

Preregister to Donate a Brain

At the family’s request, the brain bank may later provide a summary of neuropathological findings — that is, a report on any disease found and parts of the brain affected. Per the Brain Donor Project, often “this post-mortem analysis is the only definitive report of the patient’s diagnoses.”

If the donor or family wants to donate other organs at death, that can continue as planned, brain banks say. It’s important to preregister to donate a brain, though, because other organs go to living recipients; brain tissue goes to laboratories for research purposes. Your organ donor card or the icon on your driver’s license does not address brain donation.

Many Choices for Donors

Hevel’s Brain Donor Project connects preregistered donors with one of six NeuroBioBanks around the country. All collect and store brain tissue for the National Institutes of Health, the primary U.S. agency responsible for biomedical and public health research.

Several other research institutes and projects focus on one broad category of illness, sometimes to the exclusion of others, often in one geographic area. Though NIH covers the costs for donors, not all do, so ask questions. Many, but not all, provide a specific report on the deceased to families.

Stanford University’s Alzheimer’s Disease Research Center looks into several sources of cognitive impairment, and scientists aim to follow diagnosed participants over time to learn about dementia’s changes. “One brain can provide tissues for hundreds of studies” as well as offering answers to a family’s specific questions, according to a Stanford brochure.

Brain-Research Facilities

In Louisiana, one mission of the Tulane University Center for Sport Brain Bank is to learn what contributes to CTE and other trauma-related brain disorders. CTE has gotten much attention in the past decade as sports concussions and related athletic deaths have made news. Eligible athletes and military personnel who register with Tulane may receive a three-day health assessment, comprehensive care plan and connections for further treatment.

Similarly, the Concussion Legacy Foundation (CLF), an international nonprofit based in Boston, supports athletes, veterans and others faced with concussion injuries and CTE; promotes safer sports; and works toward research on CTE in collaboration with the Boston University CTE Center.

The CLF Research Registry has a Brain Donation Registry for pledging a brain for scientific research after death and a Clinical Research Registry for people interested in participating in clinical research into concussions and CTE while they are still living.

Editor’s note: As a result of reporting this article, the author decided to donate her brain to science. She did so because she notes the volume of data necessary to draw accurate scientific conclusions. Research progress has been slowed because scientists have had too little material (literally) to work with. People need answers, cures and hope, so she registered as a donor to do her bit to help. She hopes you might, too.

This article first appeared on Next Avenue, a nonprofit news site created by Twin Cities PBS. Ellen Ryan is an award-winning writer and editor. She is the former managing editor of The Washingtonian.