How did you learn about brain donation?
Our father was diagnosed with Lewy body dementia in 2014. In researching the disease, we kept reading about brain donation. 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. But the process of donating was complicated.
What did you find out about donating?
In 2013, the National Institutes of Health (NIH) established the NeuroBioBank—a consortium of six biorepositories around the country that store and distribute brain tissue on behalf of the NIH. They had set up the structure, but they hadn't started any public outreach, so most people didn't know about it. The bank is an amazing resource for science. It has samples from more than 16,000 brains. Researchers request what they need and get an answer in two to three business days and just pay for shipping.
What inspired your advocacy work?
We wanted to simplify the process for other potential donors and help the NIH get more tissue. We thought we could be a bridge between donors and the NeuroBioBank. In April 2016, I started the Brain Donor Project with the aim of educating people about the critical need for brain donations and helping them preregister. Annie joined in an official capacity in 2021.
How do you get the word out?
We started by partnering with patient advocacy groups such as the Alzheimer's Association and the Parkinson's Foundation. We do a lot of webinars and try to talk to people directly. We've also partnered with hospice groups and social workers.
Is brain donation different from organ donation?
Brain tissue is used for neuroscience research. Organ donation is primarily used for transplantation.
Can healthy brains be donated?
Yes, healthy brains (with unaffected tissue for comparative purposes) are equally valuable.
How does someone register as a donor?
Ideally, people register well in advance. They click a button on our website that says “Brain Pre-registration,” and they fill out a form that asks for contact information and whether the potential donor has a neurologic disorder. We then share that information with the appropriate brain bank—the University of Maryland, Harvard, Mount Sinai, the University of Miami, UCLA, and the University of Pittsburgh—and send release and consent forms to the prospective donor. The forms must be signed and returned to the bank for the person to be registered as a future donor.
What happens upon the donor's passing?
Families must contact the brain bank within an hour of death. The brain bank will work with the family's funeral home to recover the brain. All expenses, including a pathologist's fee, are reimbursed by the NIH. Once the brain is shipped, the body is released to the family. A summary of the neuropathological findings is also made available.
What motivates people to donate?
Most people donating brain tissue believe it will alleviate the suffering of others. Researchers need tissue to understand neurologic conditions like dementia, Parkinson's, Huntington's, and developmental disorders. Donating a brain is a step toward diagnosing, curing, and maybe even preventing a disorder.
