Not Enough People Know: Why We Need Brain Donation Awareness Day

In this country, almost 170 million people are registered to be organ donors. This means that after their death, their eyes, kidney, lungs, intestines, liver, tissue, heart and pancreas can be used to save someone else’s life.

But there is one critical organ not included in that list: the brain. This, despite the fact that high quality post-mortem brain tissue is critical for researchers and scientists to develop treatments and cures for neurologic diseases like Alzheimer’s, Parkinson’s, autism, depression and more.

Given that one in five Americans – or 50 million people – suffer from some type of neurological disease, the stakes could not be higher. The numbers are so widespread that just about everyone knows someone, or loves someone, grappling with a neurological condition. Which is why the Brain Donor Project (BDP), with the support of a Congressional Resolution, has designated May 7^th as the National Brain Donation Awareness Day. Because until we significantly increase the numbers of brain donations after death, scientific progress will remain too slow and millions of people will suffer.

Although the need for the Brain Donor Project has been around for some time, our organization was only founded in 2016 by Tish Hevel who had recently lost her father to Lewy Bodies Dementia. After learning how valuable their dad’s brain would be to neuroscientists, the family donated his brain. But it wasn’t easy. The Brain Donor Project, which supports the brain banks of the National Institutes of Health (NIH) NeuroBioBank, aims to make brain donation simpler.

While we have already helped more than 18,000 individuals start the process to become brain donors, it is far from enough. Brain disorders are simply too pervasive. In fact, they are the leading cause of disability in the United States. Yet, access to tissue is a serious hurdle for scientists trying to figure out why these conditions develop, how to treat them and, critically, how to prevent them in the first place.

Finding the answers to these questions couldn’t be more urgent, especially for the more than 6 million Americans who have Alzheimer’s disease, an illness that kills more people than breast cancer and prostate cancer combined; or for the almost 1 million people in the U.S. living with Parkinson’s disease; or the nearly 300 million people globally who have experienced depression. In this country, estimates have found that more than one in five U.S. adults live with a mental illness. In 2021, that was nearly 60 million people.

For children, the problem is severe. Suicide is the second leading cause of death for people aged 10-24 and between 2007 and 2017 the suicide rate among youth aged 10-14 almost tripled. Between 2016-2019, about 5.8 million children aged 3-17 were diagnosed with anxiety, while 2.7 million were diagnosed with depression. Many experts are alarmed about children’s worsening mental health post-covid, too.

But studying these conditions isn’t easy. Mental health disorders affect the brain at such a fine level that scientists can’t even see the affected neurons without looking at actual brain tissue. Neuro-imaging simply doesn’t cut it. Brain donations are essential.

What’s more, the chances of being diagnosed with a neurological disease increase as we age, which Americans are doing quickly. In fact, according to recent Census projections, the share of Americans aged 65 and older will grow from 15 percent of the population in 2016, or nearly 50 million people, to 23 percent in 2060, or roughly 95 million people. Meaning, of course, that the problems posed by brain disease will only multiply without scientific advances.

Fortunately, one brain donation goes far, providing tissue for dozens, if not hundreds, of neurological studies. There is also no cost to families making donations through The Brain Donor Project, and researchers welcome healthy and diseased brains alike – they need both. For those who have signed up to be an organ donor, coordination between recovery teams for those organs as well as the brain is possible. And for families that want an open casket at the funeral of their loved one, brain donation does not get in the way. The brain is removed from the back of the head without disfiguring the deceased.

So, as we approach May 7th, we urge people to register to donate their brains and to make one final, but enormous, contribution to science and humanity. The online process, available at braindonorproject.org, is simple. The impacts of this invaluable gift are immense.