Celebrating Ten Years of The Brain Donor Project
Ten years ago on October 1, 2016, we flipped the “on” switch, crossed our fingers, and hoped we were striking the correct tone in inviting people to consider something they likely knew nothing about: donating their brain for neurologic research.
We had learned about brain donation the hard way the previous year, when the inspiration for our work, Gene Armentrout, passed away from Lewy Bodies Dementia. We donated his brain for research. The National Institutes of Health (NIH) had recently established a way to collect and share the precious tissue with researchers but hadn’t yet gone to work on raising awareness of the critical need for the tissue. Plus, it was too complicated. So, when our friends asked for assistance in signing up, I figured I’d try to see if I could help first.
I was not a trained scientist, but I had been a journalist and spent my career in broadcast news management, media and communications, so I started with a phone call. To the Director of the National Institutes of Neurologic Disorder and Stroke at the time, Dr. Walter Koroshetz, now a trusted mentor. He said yes when I asked if he might be able to use my help then introduced me to the two scientists operating the brain bank structure (also trusted mentors) who patiently taught me much of what I needed to know. I say much. There was (and always is) plenty more to learn.
One thing they impressed upon me is the incredible value of the tissue. Many many diseases do not show up in animals. Some cannot be sufficiently studied during life. Others cannot even be adequately diagnosed until after death. And donated human brain tissue, for which there is still no substitute, holds the answers.
Knowing that fact has driven our work. Even before the World Health Organization (WHO) recently predicted that one in three of us will develop a neurologic disorder in our lifetime, we felt the urgency. It has not abated.
We’ve also learned so much from the 31,000+ generous souls who’ve either donated a brain or made plans to do so when the time comes. They’ve taught us that dementia impacts way too many families, making up the largest category of disorders reported. They’ve helped us see that way too many people have serious mental illness – that’s the second largest category. Brain donation will lead us to the biology behind them. And some of them – parents of children with rare genetic disorders – have shown us unbelievable courage in allowing scientists to study their child’s brain to save others.
Witnessing this snapshot of the burden of neurologic disease, devastating as it is, has been a perspective check almost daily. Likewise, it’s an honor realize the generosity of people donating a sick loved one’s brain so that future families – mostly strangers – won’t have to live through their agony.
Ten years later, we’ve raised some awareness, but not enough. While donated brain tissue is leading to so many advances for all kinds of brain disease, for so many others, the answers cannot come fast enough. We still have so much to learn.
