Dan Keller 00:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. One important aspect of research into diseases of the brain is the study of the brain itself. Various types of brain imaging are possible, such as DaTscan, which can help confirm a Parkinson's diagnosis if there is uncertainty. But actual human brain tissue is a valuable resource material for studies on the causes, potential treatments, and even cures for neurological diseases, including Parkinson's. This is why brain donation after death is critical. Brains are needed both from people with diseases affecting the brain and from people without such diseases to act as controls. As part of Brain Awareness Week, going on now through March 18, I spoke with Tish Hevel, founder and CEO of the Brain Donor Project. She explains why brain tissue is needed right now and how you can help.
Tish Hevel 01:40
The National Institutes of Health has determined that the need for high-quality, well-characterized brain tissue for neuroscience investigations is quite urgent, and it's because there are 50 million Americans, that's about one in five or six of us, who have some kind of neurological disease or disorder. While we have learned so much about the human brain in the last 20 years or so, more than in all of combined history, there is still so much to learn, and scientists are at the point where they need to be able to access this precious tissue for which there is no substitute to get to the next set of breakthroughs in neuroscience.
Dan Keller 02:27
In this day and age of genetics and molecular biology, why do researchers really need actual tissue specimens to advance the research?
Tish Hevel 02:36
Because no matter what they come up with, and we have come so far, as I said, you know, they've come up with so many sophisticated diagnostic tools, and they have reached certain conclusions based on animal studies and other sorts of imaging. There really is no substitute for actual human brain tissue. It's such a sophisticated organ, and there are still so many questions about how it functions, that the only way to really accurately test hypotheses is on the tissue itself. And no matter what they come up with, there is no substitute for actually doing an investigation with human brain tissue.
Dan Keller 03:21
Who should consider brain donation? Do researchers need brains from people just with identified diseases, or are people without any brain problems also needed for comparison?
Tish Hevel 03:33
I'm glad you asked that question, because that's one of the biggest misconceptions. It is that scientists only need diseased brains, and maybe even certain diseases at that. And the truth is, for comparative science, they need what are called control brains as well, and those are brains without a neurologic diagnosis. So at the moment, there are all kinds of neurologic disorders and diseases that tissue is required, some more than others. And the concern is that, you know, at some point that supplies will be diminished of this precious tissue, and that would definitely impede science. So to answer your question, they need all kinds of brain tissue, not just the disease tissue, but from control subjects as well.
Dan Keller 04:22
Can families gain anything from their family member having donated a brain? Can they learn about their own disease or even the family's risk?
Tish Hevel 04:32
Yes, actually, there are two big benefits. One is pretty tangible, and the other one is not so tangible, but it's real, and I'll talk about that one first. That is, although it may sound corny, there is a real sense of solace and comfort from having donated a loved one's brain. And I can speak from personal experience, my family and I felt like something positive was coming from my dad's death when we donated his brain. And, you know, in the midst of a great loss, that has a lot of meaning. So that's one benefit. Another benefit is when donating to the brain banks of the National Institutes of Health, which is called the NeuroBioBank, families can request a pathology report, and that does provide some insight. As you may know, many neurological diseases can't be definitively diagnosed until a postmortem examination is done. So, while doctors may suspect and have reasons to strongly believe a patient has a specific diagnosis, it's not until they actually take a look at the tissues that they can confirm that that was the case. For my dad, they suspected Lewy body dementia, and then once his brain was donated, they were able to confirm that diagnosis by noting the presence of a particular protein that is the hallmark of the disease. And that's really helpful, because when we know more about Lewy body dementia and how it occurs and why it occurs, those of us who are his kids and grandkids may have some valuable information there.
Dan Keller 06:21
You've identified the value of brain donation, but let's get into how one would plan for it.
Tish Hevel 06:28
Well, the ideal scenario is for an individual to register in advance, because the retrieval must take place within 24 hours of death, sooner than that if at all possible. Things need to move pretty quickly upon death. So ideally, a person would register in advance with a brain bank. And the Brain Donor Project can help with this, because we are a not-for-profit that functions as a conduit exclusively to the NeuroBioBank of the NIH, and that is the nation's only federated network of brain banks that is under contract to the NIH. So ideally, a person might come through the Brain Donor Project, which is a simple online form, and then we refer that individual to the appropriate brain bank for them. It's based largely on geography, but there are other factors as well. Then the brain bank gets back in touch with the individual within 10 business days to deliver forms that require a signature. Once those forms are signed and returned to the brain bank, the individual becomes a registered donor of that brain bank. And then at the time of death, the brain banks ask that they be notified as soon as possible, within the hour if at all possible. And then the brain bank coordinates with a recovery expert locally. So since I'm in Cincinnati, let's use this for an example. My brain bank would get in touch with a pathologist or recovery partner here in the Cincinnati area. My body would be transported to a facility locally at which pre-arrangements have been made. It could be a medical college, it could be a hospital, could be a funeral home, and my brain would be removed and shipped to my brain bank. All of that is done at no cost to the family. So that one-way transportation and the removal and shipping of the brain is done at no cost to the family. And then, once the brain is removed, my body would be released to my family to see through my funeral plans or wishes, and that's when the family takes over. So logistically, that's how it works. The brain banks are very happy to coordinate this process with a funeral home or a crematory if the family has made prior arrangements, and that way, the family doesn't have to get in the middle of coordinating all that at a time when they may be focused on other things. Naturally, that's how it works.
Dan Keller 09:07
So it sounds like the donor does not have to necessarily be near a major medical center. It can almost happen anywhere?
Tish Hevel 09:14
Not at all. You're absolutely right, Dan. You know, we have donors from all over the country for the Brain Donor Project. We have donors in all 50 states, and while about a third of them are actually control brains, they do represent about 60 categories of brain disorders. And, you know, we have pathology partners all across the country. So, you know, when death occurs, we get in touch with these people, and they immediately make arrangements to travel to the location where we have arrangements in place to do the retrievals, and then the brain is shipped promptly. It just has to happen so fast. I can't stress that enough. You know, we occasionally will get calls from people who report the death of a loved one that happened more than a day ago, and they're wondering about brain donation, and it's heartbreaking to have to tell people that too much time has passed. So I appreciate this opportunity to be able to let people know that it's something that must be done very quickly.
Dan Keller 10:16
An isolated brain can be informative, but I would think that you would get much more information if you knew about the patient's symptoms, treatments, progression of a disease. Do medical records also come into play?
Tish Hevel 10:28
Yes, they absolutely do. In fact, I mentioned the documents that are delivered by the individual's brain bank. One of the most important ones is a medical release. So the more data and information we have on an individual's brain, the more valuable it is. The scientists who receive the brains at the brain bank do all kinds of tests and assessments on the brain when it is received. So, for example, if I had Parkinson's disease, when I would pass, if I had pre-registered, they get my medical records, all the doctors that I share with them, and as much as available, the more the better. But then my brain is assessed and characterized, and it would be categorized as a brain of someone with Parkinson's, and that additional information would also be attached to my file. When an investigator is seeking tissue for scientific research, my brain would be one that could be used because it's categorized properly for that investigation.
Dan Keller 11:30
I assume family members are informed, but is their consent necessary? They have to enter this process because the donor really doesn't have any choice at the critical period.
Tish Hevel 11:41
Among the papers that are delivered are consent forms, but there's an oral consent that's also required at the time of death, which is why it's important when the notification is made. That's the final consent that is given over the phone. So yeah, the family does need to know, and that's why some people have asked about, well, can I put this in my final papers that I wish to be a brain donor? And the answer is, that's not really sufficient to make sure that it takes place. You know, the most important thing that a person can do in addition to being registered is to let their family know their wishes. That's the only way to ensure that this will be seen through. So yeah, the family is a huge factor in helping see the process through.
Dan Keller 12:28
Are there any religious prohibitions?
Tish Hevel 12:31
Not that I'm aware of. As in organ donation, the procedures are very much the same. And since organ donation, people have kind of been through this in terms of working with people who may have objections, and they have pretty much ruled out or helped dispel any concerns about that it might be in violation of any particular religion. So follows brain donation. It's not a factor in most major religions.
Dan Keller 13:01
Is it disfiguring to the deceased person? Can there be an open casket funeral?
Tish Hevel 13:06
That's a very good question. It is not disfiguring, and that is one of the big concerns. There are a handful of things that we are trying to dispel as potential misconceptions. And that is, one, it is not at all disfiguring. The retrieval is done by a small incision at the base of the back of the head, and so it is not at all disfiguring, and an open casket is still very much an option. Some of the other misperceptions that we're working to dispel is a lot of people believe if they've checked the box on their driver's license for organ donation that they have also made arrangements to donate their brain, and that is not the case. The brain is so much more valuable for neurologic study. So it's critical that people make separate arrangements to donate their brain. That's one thing. The other one is that people who have made arrangements to be a whole body donor through an anatomical donation program, they're like, okay, I'm covered—not really. Again, anatomical study is what the body is used for in a whole body donation program, usually affiliated with a medical school. And the brain is so much more valuable for neurologic study that we really encourage people to consider doing that separately, and it is possible to do both. There are whole body donation programs that will accept a body for study once the brain has been removed and sent elsewhere, but not all of them do. So it's important to check if that's something that you're considering. Also, there's a misconception that only diseased brains are needed, and we've talked about that controls are just as valuable. And the final one is that there is no cost to the family, no additional cost when donating through the brain banks of the NeuroBioBank of the NIH.
Dan Keller 14:53
It's a very broad area, but is it possible to put your finger on one or two things that have been discovered because of donated brains?
Tish Hevel 15:03
Here's what I do know: the NeuroBioBank of the NIH has some very stringent requirements for researchers, which is one of the reasons we're so thrilled to be affiliated with them. Any scientific investigators who receive tissues for study from the NeuroBioBank are required to adhere to a certain set of publishing and transparency protocols so that scientists can build upon each other's findings. And, you know, last year, several of the institute directors at the NIH authored a letter about the importance of brain donation, and it linked to several different studies. It was a myriad of different disorders that donated brain tissue had been very instrumental in moving the needle closer to understanding what the disease is all about. You know, the ultimate goal is for prevention, treatments, and an eventual cure for these neurologic disorders. So sometimes that takes a bunch of steps, but donated brain tissue has been instrumental in a plethora of findings. So it is already, you know, proven to be quite the valuable resource for research.
Dan Keller 16:22
Where can people get more information?
Tish Hevel 16:24
Well, braindonorproject.org is our site. We have a pretty robust FAQ section, and there are a couple of ways to proceed. There is a lot of information on that site. If they want to go deeper, if they have specific concerns or questions, the best people to ask are the people who operate the brain banks, because they have seen a lot and they understand a lot of things about brain donation. So what we usually ask people to do is, if it's something that you want to do, then start the process. And when you're referred to the brain bank, you can ask them a whole lot of questions as well. So there's a fair amount out there, and there are people to talk to as well. So yeah, braindonorproject.org is the site.
Dan Keller 17:10
Have we missed anything interesting or important to add?
Tish Hevel 17:14
I can't stress enough the urgency of this, especially when it comes to, you know, the kinds of devastating diseases like Parkinson's, for which hundreds of thousands of dollars are being spent on researching, you know, what causes it, what's a better way to treat it, or will we be able to cure this in our lifetime—not to mention the medicines for people who suffer from it and how we can help with that. Well-characterized, high-quality human brain tissue is necessary for us to come to these findings. And so I can't stress enough how important it is for people with Parkinson's disease and their families to please consider donating your loved one's brain to advance the science of our knowledge of this disease.
Dan Keller 18:06
Good way to end. I hope our audience takes that to heart. Thanks a lot.
Tish Hevel 18:10
I hope so too, Dan. I hope so too.
Dan Keller 18:20
If you or a friend or family member wants to further research on Parkinson's and other brain diseases, a good starting point, as Tish said, is the website of the Brain Donor Project at braindonorproject.org. They have detailed information on the process for anyone curious about brain donation. And as always, our Parkinson's Foundation PD Information Specialists can direct you to information and resources. You can reach them at 1-800-4PD-INFO. For more information and activities related to Brain Awareness Week, follow the Parkinson's Foundation on Facebook or Twitter. We'll be posting fun facts, brain training games, and more throughout March and into April, which is Parkinson's Awareness Month. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life. Today, to that end, we'll be bringing you a new episode in this podcast series every other week. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
