S4:Ep7 – Brain Donation? There Are More Benefits Than You Think
Voice-over: Welcome to Spotlight on Migraine, hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease.
This episode is brought to you by our generous sponsors AbbVie, Lundbeck, and Teva.
Molly O’Brien: Hi there, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re talking all about brain donation. How cool is that? Might not have ever crossed your mind before, but today we’re going to learn a lot more about the process.
We do know that brain research is crucial for helping people living with migraine and other neurologic diseases. And through brain research, we can hopefully improve the lives of those people living with migraine and find better treatment options and understand these diseases.
All right, so to help us get started and learn more about what it takes to donate your brain and all that comes with it, I’d like to introduce our guest today, Tish Hevel. She’s the CEO and founder of the Brain Donor Project. Tish, thanks so much for joining us today.
Tish Hevel: Thanks for having me, Molly. I’m delighted to be here.
Molly: So glad to have you. And I want to start out by filling people in. Just tell us a little bit more about what the Brain Donor Project is.
Tish: OK, love to. So I sort of happened upon it. I wasn’t born this brain person. My dad was sick, and he was diagnosed with Lewy bodies dementia back in 2014, and we didn’t know what that was. So we’re googling away trying to figure it out, and we kept coming up on brain donation. I think researchers at that time thought they were onto something, and so they needed the tissue to test out their theories.
And so as my dad’s disease progressed, he had already wanted to be a body donor, so we decided to make arrangements to donate his brain as well. And, at the time, it was very complicated. And so we got it done, just barely, and then we talked about it a lot. And our friends were like, “What? I didn’t know that was a thing.” And we’re like, “Neither did we.” And so they asked, “Can you help me do it?” And I was like, “Let me see if I can help them make it easier first because it’s tough at the moment.”
And so once we recovered and everything, we got in touch with the National Institute of Neurologic Disorder and Stroke. They, with the National Institute for Mental Health, had just a couple of years prior got into the business of brain banking. It’s like the NIH decided that they needed to do this because access to the tissue was not what it should be for neuroscientists. There were barriers.
So the NIH contracted with six different brain banks around the country, paid them a lot of money, and said, “We need you to go out, collect brain tissue, store it, prepare it for lab use, and then help us distribute it really democratically in a nonpolitical way for research.” And they had just not gotten around to the public-awareness part of things when we got involved. So we pretty much called them up and said, “Could you use some help?” and they said, “Yeah.”
And so we started the Brain Donor Project exclusively to support the brain banks of the NIH, and then we sort of grew into being their intake arm. So that structure of brain banks is called the NeuroBioBank. And if you go to their website, it’s really cool. It’s at neurobiobank.nih.gov.
There’s basically two main sections to the website. First one is “Are you here to be a brain donor? That’s great. We need you really bad.” And it links to the Brain Donor Project to start the process.
If you’re a scientist, though, it’s just beautiful. It’s like, “OK, tell us a little bit about yourself in terms of your credentials and then the specifics of your study, and then look at these supplies.” It’s like pick a disorder, age match controls, a lot of data in the portal about all the different kinds of tissue. And then you make a request through the portal, you get an answer within 24 hours, and all you pay is shipping. It’s the most beautiful resource to science, and they do support scientists all around the world, so.
Molly: That’s incredible. So tell us a little bit about the Brain Donor Project. If I go on your website, which I have, and start the registration process, does my brain go directly to you, or how are you guys involved? Is it more like distribution?
Tish: Very good question, because we do sort of work as a conduit for those brain banks. So in our efforts to simplify the process, we built this website at braindonorproject.org, and we like to think of it as kind of a clearinghouse. This is where we go to get your questions answered about brain donation.
When you’re ready, there’s a simple online form that’s accessible at a little button that says “Brain Pre-registration.” So if you go there — again, it’s very brief. First question it asks you is “Are you doing this on behalf of yourself or someone else?” Second question is something to the effect of “Are we in a hurry?” And then the rest is just contact information, and then there’s room for a diagnosis at the end.
Based on that, we determine which of those brain banks in the NeuroBioBank structure is the most appropriate, and then we connect the two parties either in a hurry, or if we’re not in a hurry, they would go ahead and send that brain bank’s registration forms and you can go through the normal process.
So the most important thing we tell everybody is it’s critical, really critical, to be registered in advance. Everything has to happen very quickly upon death, and it just goes so much more smoothly if the paperwork’s all in place. So if you can get somebody — if you think this is something that you want to do, no matter how old you are — because the brain banks stay in touch with you, and as your situation changes — a lot of people develop a neurologic disorder as they get older.
So, anyway, the idea is to get registered in advance. And then when the time — then we connect you with a brain bank. The brain bank will send specific information about what happens at time of death, but the nutshell for all of them is they ask to be notified very quickly upon death, ideally within the hour.
Tish: And then — yeah. And then the brain bank makes arrangements for the body to be transported someplace local. Typically, the procedure is performed at the family’s funeral home. But if, for whatever reason, that’s not workable, then another medical or mortuary facility is identified. Again, the brain bank arranges for the transport. The brain bank sends a pathologist or recovery specialist there to remove the brain through the back of the head so it isn’t disfiguring, and then he or she ships the brain to the brain bank.
All of that is done at no cost to the family. The NIH knows this tissue is so precious to neuroscience that they reimburse everybody along the way for that. So once the brain is shipped, then the body is technically released to the family to proceed with whatever funeral or cremation plans have been made.
There’s one other really important thing, though, at this point. If the family requests it of the brain bank, the brain bank will provide, also at no cost, a copy of a really important report. And it is called the “
“Summary of neuropathological findings.” And that is basically top-line autopsy information of the brain. What it does is identify any diagnoses discovered in the brain, the stage of the disease, and the region or regions of the brain that were implicated.
So, as you can imagine, this is particularly important in neurodegenerative diseases, like the Parkinson’s and ALSs and all the dementias, because prior to them — as in the case with my dad. The Lewy bodies diagnosis is a very well-educated guess. That’s what it looks like, but we don’t know for sure until you do a postmortem exam.
So to have that confirmed or, in any case, identified is such important news for the family. Once we know more about these diseases and exactly how inheritable they are and all that fun stuff, that information is going to be really valuable to have.
Molly: Oh, my gosh. That’s incredible to be able to have access to that information to give to your family down the line. Wow, that’s incredible that that’s available.
I want to just take a quick step back here for a second. A lot of people might think if they are signed up to be an organ donor, that the brain’s included, but it sounds like that’s not the case.
Tish: I’m so glad you went there, because there are some very common fallacies that I have to work really hard to dispel. That’s the very first one. People assume — and why wouldn’t you? — that if you’re signed up to be an organ donor, the brain is an organ, so that’s part of it, right? Not. They don’t routinely remove a brain as part of organ donation.
There’s a whole lot of reasons why. Obviously, we’re not transplanting brains. Retrieving organs for research is sort of a different thing, and it’s a different kind of retrieval than they’re used to doing. So that’s why separate arrangements need to be made with a brain bank in order for that to happen.
But, similarly, like I mentioned, my dad was a body donor. So you start thinking, “Oh, yeah, well, that’s the brain.” But the difference is that the brain is not used in that case for neurologic research. It’s just used for anatomical study. And that’s not nothing, but it’s not nearly as valuable. And this isn’t just my bias talking. Scientists believe it’s just so valuable for neuroscience research. It’s possible to do both, though, and we actually did that with my dad.
Molly: So, Tish, can you tell us a little bit about who can donate their brain, and is there anyone who should not consider brain donation?
Tish: Good question. They need everybody. They really do. And, these days, the most pressing need, honestly, is for control tissue, which is people who haven’t been diagnosed with a neurologic disease or disorder. Couple reasons for that. Controls are used in every single study. It just makes sense. You have to have something to compare it to, right? And so not everybody who collects brains for a certain disease or whatever collects controls. So everybody needs them.
And, in addition to that, you’ve heard of the BRAIN Initiative, the big multistakeholder study that’s helping revolutionize what we understand about the brain? It is entering a phase where they are doing what they refer to as a complete “atlasing” of every cell in the brain, and for that, they will need significant amounts of control tissue.
Because of the fact that they need controls — control tissues would be people who haven’t died from a neurologic disease or disorder, right? They die of something else, potentially many of them in accidents or unexpected deaths. So if the first time you’re hearing about brain donation — it had never come up before in your life, which isn’t unusual — is when you’re being asked to consent to donate the brain of a loved one, and you’re still wrapping your arms around the fact that they’re even gone, that’s too traumatic. So chances are people aren’t going to be agreeable in that condition just because it’s too much.
So the controls are a real issue, but every single disorder needs this tissue to study. We haven’t had good breakthroughs in so many categories of brain disease in many, many years. The other technology is advancing really well. We have phenomenal imaging tools. Well, how are they going to learn where to point those fancy cameras if they don’t have the tissue to really examine? So it’s more critical than ever.
I think you asked about should anybody not do it? And the answer to that is really no, but there are a few conditions that preclude, but not many. For example, if for whatever reason we can’t get the brain recovered, back at the brain bank, stored properly well within 24 hours, then we’re not going to attempt, because that’s called the PMI, the postmortem interval, and it needs to be kept as brief as possible. In fact, for some of the tools they’ve come up with now, they even want them faster.
A systemic infectious disease is a problem. There are concerns about the lab and getting it contaminated, but there’s not a lot else. We can’t take them from other countries because that takes too long. Stroke, if it’s a massive stroke, it really changes the structure of the brain, but otherwise they can do it. There was a while they weren’t taking brain cancers because they thought, “Uh, you know, all that radiation.” But then it’s like, “No, we need to study what radiation does.” So there are very few decline factors.
Molly: OK, thank you for that. So let’s get back to some of those myths that people might have about brain donation. And there’s a lot of misconception about organ donation as well, but let’s stick to brains because that’s what we’re talking about today. So are there any myths or things that you want to debunk about donating your brain?
Tish: Absolutely, and the biggest one is about organ donation. People just think it’s part of that, and it isn’t. You have to make separate arrangements. A lot of people have signed up to donate their body to a medical program so that medical students can learn about anatomy, and that’s not the same thing either. The brain is used to touch it in that case, but it’s so much more valuable for neurologic research. That’s another big myth.
People are afraid it’s going to cost something. People are afraid it’s going to be disfiguring. It’s not. A lot of people think they only want diseased brains. It’s like, “Well, I’m lucky enough to have a healthy brain. They probably don’t want mine.” Couldn’t be farther from the truth. They’re needed in every single study. So those are the biggies. And then the idea of being able to get your hands on a report, I think that’s a big, important thing for many families.
The other thing that I should mention in terms of a benefit to the family — I know this sounds corny, but it’s really true. There is a palpable sense of comfort that comes from donating a loved one’s brain, because in the midst of a great loss that you really can’t mitigate — it’s going to hurt like it hurts. But you do find a little bit of comfort in knowing that some family down the road isn’t going to have to go through what you all just went through, that you could have a hand in making someone’s road a little bit easier by doing this.
Now, it’s not going to be this generation, but — and I hear so many people say, A, that’s the reason they’re doing it, and, B, they all feel that. They all feel that. It’s not just something that it’s like some weird Tish thing. Everybody feels that, and it’s kind of cool.
Molly: It is pretty incredible, the thought of how your body, your brain could really make a difference for future generations to come. And that’s really what happens when you do this type of donation.
Can you tell us — because there already have been some advancements that have taken place with neurological sciences — can you mention any that you know of off the top of your head? Any advancements that have taken place because of brain donation?
Tish: So here’s the tricky part, because I’m not a scientist, and if I start to try to talk like one, it’s not going to be good. But what I do know is this: the scientists who get tissue from the NeuroBioBank are required to publish their findings. Everybody’s got to build off of everybody else’s knowledge, which is how it should be, right? So if you go to the NeuroBioBank’s website, there’s a big section there that talks about the findings that have come from studies using donated human brain tissue.
And they’re impressive. The list gets longer and longer. The categories get broader and broader. And so while we can’t tell an individual person, “Your loved one’s brain was used to determine X,” you know that donated brains are doing so much good.
Molly: Incredible. And I know you just said you’re not a scientist, but you are poking around that website every now and then. Do you know of any studies that are related to migraine through brain donation?
Tish: Here’s what I do know. I know that there are a lot. You all have done a lot of work to identify all these comorbidities, which — who knew? I certainly didn’t. And what’s interesting about brain donation is it has uncovered that that is the case with many, many things. No real disease kind of exists in isolation in its own little pocket of abnormality, right? There’s so many things that they’re learning are interrelated in some form or another.
So I know that that’s what makes it so valuable when people do donate their brain, especially — and I’m saying this to — especially for your listeners — if you’ve been involved in any kind of study, that preclinical data makes your brain even more precious than it already was. That way, scientists are able to go into this knowing, “Oh, here’s what we know about this tissue long before this person’s died,” which is a little usually more deep than general medical records, obviously, if they’ve been involved in a study, so.
And the interesting thing is people who have contributed to science that way are often ready and so willing. It’s like they understand that by being involved in a study, they have really contributed to the knowledge base. What better way than to close the loop on all that to say, “Now take a look at it. Then I’m finished with. And then you can get everything you want to know out of it.”
Molly: So incredible to learn more about the Brain Donor Project and about how you can go about donating your brain. The process has been made simpler through the Brain Donor Project. So thank you for all your work that you’ve done on all of that.
So, Tish, before we go, is there anything else that you want to share, anything that you think we’ve missed?
Tish: I guess one quick closing thought, and that is that we spend a lot of time when we get close to death thinking about what we want to do with our money and what we want to do with our stuff and the things that we have and who we think would like them and our legacy. I would just invite people to think of your legacy a little more broadly. You’ve got some parts that would mean a lot to people, and it really is, in my opinion, the most precious gift you can leave, so think about that. Think about that.
Molly: That’s such an incredible point. Brought me to tears to think about our legacy and what we pass on. It’s not just our estate. It’s not just our stuff. It is actually us. So appreciate you sharing that.
It’s been really great learning about the Brain Donor Project and how we can go about donating our brain and the impact that can make down the line. So we’re wrapping things up here on Spotlight on Migraine. I’d like to thank our guest today, Tish Hevel. Thank you so much for joining us from the Brain Donor Project. It’s been great chatting with you.
Tish: I’ve enjoyed it too. Thank you for having me.
Molly: We really do appreciate your time. We appreciate those of you at home watching and listening as we wrap up this episode of Spotlight on Migraine. I’m Molly O’Brien, with the Association of Migraine Disorders, and we’ll see you next time.
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