Exploring Brain Donation with Tish Hevel

Show Notes

May 7th is National Brain Donor Awareness Day, bringing attention to the critical need for brain donation and the advances in research made possible by donors across the country. Leading the charge is the CEO and Founder of the Brain Donor Project, Tish Hevel.

In this episode, we sit down with Tish to dispel misconceptions about brain donation and discuss the crucial role that donated brain tissue plays in unraveling the complexities of neurological disorders.

Episode Transcript

Katie Riley:

Hi everyone, and welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Katie Riley and I’m the Vice President of Communications at the Alliance for Aging Research. Today we’re going to talk about a topic that we’ve never approached on the show’s 60 plus episodes to date, brain donation. Now, many of us or our loved ones have opted to become a brain donor in the event of our death, but today we’re going to raise awareness about this option that is not as commonly known or utilized as a organ donation process. An estimated 50 million Americans, that’s one in six of us, suffer from some kind of neurological disease or disorder, and as we age, our likelihood of being diagnosed is unfortunately increasing.

Joining us to answer some of the commonly asked questions about brain donation and to debunk a few misconceptions is Tish Hevel, CEO of the Brain Donor Project. This organization is a not-for-profit created to support the NeuroBioBank at the National Institutes of Health, and it simplifies the process of brain donation. She’s going to tell us how we can gift what she calls the most valuable thing that we have to better the health and wellness of future generations. Tish, thank you so much for joining us today.

Tish Hevel:

Katie. I appreciate you having me. Thank you.

Katie Riley:

Well, let’s jump right in. Why don’t you start by telling us how common or uncommon brain donation is and what researchers can learn from a brain, whether it be diseased or healthy?

Tish Hevel:

Very good question to start things off because part of the problem is it isn’t common enough. You mentioned organ donation and that’s the biggest myth is that most people think if they’ve checked the box to become an organ donor, that includes the brain. I mean, it seems reasonable, right? Not the case. So separate arrangements need to be made, and I feel like once people know that, they’re like, “Oh, okay, well I’ll do that. How do I do it?” So that’s really heartening because it’s not that people have terrible objections about the whole idea, they just didn’t know it’s a thing nor how to do it. So we want to make it a lot more common is the answer to your question. We’re fortunate in that 18,000 people have so far at least started the process through the Brain Donor Project of becoming a donor when the time comes either for themselves or a loved one, but it is such a critically needed resource.

Those of us who work with aging populations and in disease communities know that we haven’t had a good breakthrough in many of the diseases that are especially progressing with age and way too long, and neuroscientists are telling us that this is the most precious resource for their studies. There’s no substitute for it. We come up with all kinds of really great technologies, imaging things to help them look around, but they don’t know where to point all those fancy instruments without having this tissue to help them guide the way. So you mentioned diseased and healthy, and I’m glad you did because one of the fallacies is people think that they only want diseased brains. It’s like, “Oh, I have Alzheimer’s. I’ll give them my brain for Alzheimer’s disease.” But if you think about it, healthy tissue is needed in every single study for comparative science. So it’s not just for people who are sick, those of us who are fortunately at the moment anyway, not can play a really important role as well.

Katie Riley:

Great. I think this topic is just fascinating. It’s not something that people talk about sitting around the dinner table, so I’m so glad that we’re covering it today. Can you talk a little bit about the process? What happens when a brain is donated to the National Institutes of Health? How is it accessed upon death? Where does it go and what type of research is done?

It won’t be that many generations until we know the genetic underpinnings of these disorders. And then beyond that, not that much longer until we can eradicate some of these diseases within families once we have the info that we need.

Tish Hevel:

Sure. That’s a big question a lot of people have because the logistics of this are like, “Uh, that’s…” That helps you determine if you’re going to do it. So first I’ll start with what the individual goes through and then what happens after death. So the important thing is that a person would be registered before they would pass, the timetable is quick upon death. It’s the same kind of timetable as organ donation. So ideally the brain is back at the brain bank, stored properly, well within 24 hours of death. And so because of that, it’s important that all the paperwork need to be in place in advance. Registering is easy. An interested individual can go to our website at braindonorproject.org, and there’s a little brain pre-registration button in the upper right-hand corner. Takes you to a very brief online form. First question is, are you doing this on behalf of yourself or someone else?

So we address that right away. And then the next question is something to the effect of, are we in a hurry? And the rest of it is just contact information for the person filling out the forum and the potential donor, and then there’s room for a diagnosis at the end. Based on that information, we can determine which of the brain banks in the NIH’s structure, which is called the NeuroBioBank, makes the most sense for that person. And then we connect them. We sort of make them shake hands and we hand off the relationship to that brain bank and then the brain bank takes over. They provide all the information that the individual needs to share with their family and talk about it in advance in order for this to take place. It’s not like there’s a big national list like with organ donation.

This is really incumbent on the family to see the person’s wishes through. So the brain bank provides a 24/7 phone number, and the most important piece of instruction is that they want to hear from the family quickly, as I mentioned, ideally within the hour, and then the brain bank… I mean, that doesn’t mean everything happens that quickly, but at least want to have things moving or be notified. And so then the brain bank makes arrangements to have the body transported someplace local. Typically, these days, the recovery procedure takes place at the family’s funeral home, and so the brain bank will get in touch with them. The family makes two phone calls in that case, if they’ve got something set up to the brain bank in the funeral home, shares contact information. They coordinate all this at a time when the family’s not going to feel like getting in the middle of it anyway, so the body is taken there.

The brain bank sends a pathologist or recovery specialist there to remove the brain through the back of the head, so it’s not disfiguring. An open casket is still very much an option, and then he or she ships the brain to the brain bank. At that point, the body is technically released to the family to proceed with whatever burial, funeral, cremation arrangements have been made. And the other important thing is, everything I’ve just said up to that point is at no cost to the family. The NIH values this tissue so much for neuroscientists and their studies that they reimburse everybody along the way. So the family just pays for whatever funeral or cremation arrangements that they would have absorbed have there been no brain donation. The other thing that’s really important at this point, and this leads to where the science goes, if the family requests it of the brain bank, and this is a big motivator for many families. The brain bank will supply a summary of neuropathological findings.

So that’s basically the neuropath report, the autopsy of the brain, and it describes any diagnoses discovered in the brain, the stage of the disease in the region or regions of the brain that were impacted by this. Many of the neurodegenerative disorders, the dementias, ALS, Parkinson’s, especially the dementias, they can’t be definitively diagnosed until a postmortem exam is done. And so to have the validation, the verification that the whatever, in our case, it was Lewy body dementia with my dad. That that’s really what it is such valuable information for the family. It won’t be that many generations until we know the genetic underpinnings of these disorders. And then beyond that, not that much longer until we can eradicate some of these diseases within families once we have the info that we need. So the brain is then assessed in many different ways, toxicology, neuropathology.

There are oftentimes when the family undergoes an interview to help validate if there are mental health diagnoses at play, but all of the medical records release has been signed, so all that is executed upon death. The brain is then characterized or categorized as the brain of an X year old person with X disorder or disorders. And then it is figuratively put on a shelf stored, and then the data about it is entered into the NeuroBioBank’s portal. So that when a researcher goes there, and I’ll come back to an amazing resource this is. But a researcher say who is, let’s just say it’s ALS, and they’re looking for the brain of women and men between X and X who have ALS. My information would show up, and then the researcher can request the tissue that they need from nearly 16,000 subjects that are listed in this portal. They get an answer usually within 48 hours or so, and all they pay is shipping. Pardon me, it’s just a tremendous resource for science.

Katie Riley:

That is so interesting to hear that you could, as a family member, receive information back that could potentially impact your own life. When you think about an organ and tissue donation and saving others lives, and in this case, the research that can be gleaned from a brain and that’s incredible.

Tish Hevel:

It is, and it probably won’t be anything that can be acted upon in that person’s lifetime, but generations down the road, perhaps even this own person’s family down the road and/or strangers will benefit from the gift for sure.

Katie Riley:

That’s wonderful. So Tish, you’ve done a great job explaining how to go to your website, braindonorproject.org and fill up information to register to get this process getting into motion and everything. Are there any other things that families need to understand? Is there an advanced directive that needs to come into play, or does this need to be in a will or a trust?

Tish Hevel:

That’s another question that I get a lot. And so I’d like to try to stay ahead of it by doing some more education, but that’s my life, in this topic anyway. Attorneys will call us and say, “Can you give me, there has to be some boilerplate language, blah, blah, blah, because we’re working on end of life planning.” There really isn’t a boilerplate language for two reasons. One, by the time anybody looks at the will or consults after death paperwork, it’s too late. The most important thing anybody can do is register in advance and talk to your family about your wishes. Leave the phone number. We say two people because you never know what’s going to happen. Two people closest to you, make sure they understand exactly what you want to have happen, make sure they have the phone number to notify.

The brain banks themselves do a very good job of staying in touch with people. They usually call on an annual and make sure contact information is correct and just double check with people that all their plans are in place. But in terms of legal documentation, there really isn’t anything. And the only other thing that I would mention is once a person has preregistered with us and then we hand them off to a brain bank, they sign an additional set of forms that are brain bank’s registration forms. The medical records release is part of all that, but the paperwork itself is not too taxing. When the time comes, when the family has to call to notify the brain bank, there is one final consent that’s given over the phone. So the technicalities of it aren’t really that complicated.

Katie Riley:

Great. Now, if someone is considering this, what are the parameters? Is there an age limit? Are there geographical limitations? And how about medical conditions and lifestyle choices? Is there something that could make someone ineligible for brain donation?

Tish Hevel:

Yes, but not a lot. So first of all, you asked about geography. The brain banks of the NIH recover from all across the US. They have recovered from remote Alaska and places that you think might be difficult to get to. The brain banks themselves each have networks of recovery specialists around the country who are sort of on standby, which is why I tell people sometimes too. Another important thing to do is when you feel like it’s getting close, to give the brain bank a quick call and just say, “Hey, I’m calling on behalf of so-and-so who’s already registered with you. It looks like death may be near.” That’s always helpful because the brain bank can then reach out and make sure they’ve got people in the right place. But in terms of geography, no real limitations. In terms of age, no limitations. The people who pre-registered with us, we could call sometimes heartbreaking as heck, but from parents who anticipate delivering a non-viable baby and want to make sure that they can donate that very precious tissue to try to understand developmental disorders.

And no matter how old a person is, there are a lot of great studies underway about very healthy aging. The super elderly they call, I’ll say us because I’m approaching it, but it’s fascinating to me. I got to hold a brain one time of a man who was over a hundred years old and his brain was larger than is typical for a person of that age. They say he was very astute up until the time he died. So there’s much to be learned from people who don’t have diseases. There are some issues that would render someone not being a good candidate. We can’t accept brains from outside the country because it just takes too long to get them to a brain bank. There’s a period of time they call PMI, which is the postmortem interval, that must be managed well, and that’s why I talked about us being in such a hurry to get the brain back where it needs to be. A systemic infectious disease that could compromise the lab is an issue.

So Lyme disease sometimes acts like that. So they worry about being able to recover a Lyme disease brain just because it acts like an, it’s an infectious disease. At the beginning of COVID, they weren’t sure about how to recover those kinds of brains without contaminating people or places and spreading the disease. So those are things they have to get under control. Dementia is interesting these days because, and this is really sad, but we could bring back nothing but dementia cases and not have room for anything else. It’s not an inexpensive infrastructure, brain banking, and there’s no unlimited resources, so you got to prioritize what you want. So researchers have defined the kinds of dementia cases that are most interesting to them, and they usually involve a significant family history or someone who’s had some preclinical testing, but there’s other factors as well. But I’m trying to think.

We used to not accept brain cancers, but then the scientists decided, “Nope, we need to study the tissue around the area that’s been radiated.” So that’s not a factor. I’m trying to think of what other demographic or geographic questions you ask, but there’s not a lot of restriction. Most is workable and valuable.

Katie Riley:

Great. How about, I know our audience, we have a lot of family caregivers who are caring for older loved ones who listen to the show. What if someone is hearing this and they’re caring for a dementia patient or someone with Alzheimer’s who has not made that selection for themselves upon their death? Are they able to do that for them?

…so many families call and say that “Listen, he can’t play a role in this decision, but we know he would not want future generations of families suffering this way…”

Tish Hevel:

Absolutely. And that’s why the first question is, are you doing this on behalf of yourself or someone else? It happened with us too. By the time, my father was, this is how we started this whole thing. My father was diagnosed with Lewy body dementia, and he had wanted to be an anatomical body donor, so we knew he would want his brain studied for neuroscience research. So we made the decision on his behalf. We knew it was something he would want. And so the family can make that decision and so many families do call and say that. Listen, he can’t play a role in this decision, but we know he would not want future generations of families suffering this way, and we know that’s not what we want. So yes, we’re making that decision on that person’s behalf, very doable. It helps a lot.

If the family’s all in agreement, there are rare cases where they aren’t. And the brain banks don’t want to get in the middle of any kind of controversial situation or family that’s not in agreement. So it helps if everybody’s on the same page. But very definitely.

Katie Riley:

Great. Thank you for sharing your story. I know that your father’s death is what led you to this important work, and I think it’s really admirable that you’ve turned a situation with a loved one into something that is benefiting millions of people. So congratulations on that, and thank you for your important work. I know that May 7th is Brain Donor Awareness Day. Can you tell us a little bit about what’s happening on that day and how people can get involved?

Tish Hevel:

Sure. So I got to pick the day, so I picked my dad’s birthday, so that’s why it’s on the 7th –

Katie Riley:

That’s wonderful.

And so we’re having this moment of remembering [our dad] with a lot of friends and family and there’s no body. And we felt great about the fact that all his parts were being used to advance science in some way.

Tish Hevel:

And we have, a Congressional resolution was introduced last year, and it’s being introduced again this year. So it’s a multi-year resolution that had bipartisan support, which makes us very happy. There’s really nothing controversial about this. It’s just the fact that we need to raise awareness. So having that designation helps get us out there a little bit more. We don’t have a big event scheduled, although we talked about ice cream socials because my dad loves ice cream. But the main thing is our advocacy partners are doing a lot digitally with us to help get the word out. We work with a lot of organizations that look for cures and treatments for different diseases or ways to support the people who have those diseases and their families. And we provide information for them to share with their communities and so they are very supportive of us in this field.

So it’s just a way to put a date on the calendar and says, “Okay, we’re going to make extra noise here.” And that’s what we’re trying to do. Because as I mentioned, the problem is not enough people know. And so it’s not like we have to work really hard to overcome objections from people who think this is weird. People don’t think it’s weird anymore. Our attitudes about death have changed so much. There was a study by the National Funeral Directors not long ago that, I forget what the year they said it was, but it was like by the year 2030 or 2035, which is, let’s face it, tomorrow. 70% of Americans would be opting for cremation. So if that doesn’t tell you that our parts are not as important to us as they maybe once were as a society, I know we felt that way when my dad passed and we donated his brain and we were also able to donate his body.

And that’s tricky, but it can be done sometimes. And so we’re having this moment of remembering him with a lot of friends and family and there’s no body. And we felt great about the fact that all his parts were being used to advance science in some way.

Katie Riley:

It’s definitely a different mindset to think about, but I think once you get there and understand the benefits of it’s an easy decision.

Tish Hevel:

I’m with you, Katie. We find that people feel that way a lot.

Katie Riley:

Wonderful. Well, now I want to pivot to our two closing questions that we ask all of our guests on This Is Growing Old. We like to ask first, when you were a child, what did you imagine growing older would be like?

Tish Hevel:

That’s such a great question because it’s so hard to picture yourself at that point. First of all, I figured when I got to 39, I would stay at 39. Physically, emotionally, mentally, all those things, wouldn’t that be great? No, growing old is such a gift and not everybody gets to do it. So I didn’t know how my life would turn out, but I knew I wanted to contribute, and the fact that I’m still able to and in this way that I feel so passionate about makes me very happy.

Katie Riley:

Wonderful. That’s a great response. And then our final question that we ask all of our guests is what do you look forward to now that you’re an adult? What do you look forward to most about growing older?

Tish Hevel:

That’s another great question. My dad and I felt this, he was a very engaging man. He wanted to know people’s stories. He wanted to connect with people in a way that was meaningful. And I kind of understand that the only thing that matters in this life is what we are to each other, what we can be to each other and for each other. And so my ability or opportunity to do that is something I take very seriously. And as long as I continue to do that in a meaningful way, that’ll make me super happy.

Katie Riley:

Fantastic. Tish, thank you so much and your colleagues for the work that you’re doing with the Brain Donor Project. It’s such important work. And thank you for joining us to share this important information. As Tish said, you can visit braindonorproject.org to learn more or pre-register to become a brain donor.

Tish Hevel:

Thank you, Katie.

Katie Riley:

And for everyone listening and watching us online, thank you for listening to This Is Growing Old. If you’re enjoying the show, please subscribe wherever you stream your podcast. And be sure to follow us on your favorite social media channel for more resources from the Alliance for Aging Research. Thank you.

Tish Hevel:

Thank you.