Hello, and welcome to the gifted life podcast, where we have conversations about working tissue and eye donation. I'm Marice Yol, I'm Sally Jundry. I'm Joey Boudreaux. Wait a minute.
That's not it. So Joey sounds like, what are you doing here? Hey, can we go and make it in today? Where is Joey and what's going on, but we love you.
Here's an office director of marketing and public relations, so she's going to fill in those clinical boots today, so we appreciate you. Yeah, these are my case in two-step boots today. Well, we glad that you brought them. But look, we were dancing, we were clapping, we were cheering because we have a crew of LSU kids that we work with each semester.
They're a new crew of kids, but they graduated from LSU and these seven girls, these seven future leaders, professionals now, tell us they're lifelong advocates of donation. Some won't stay in Louisiana, some are spreading their wings, Nashville, Florida, but they know about donation and they're going to spread the word. That's pretty cool. Yeah, they did a YouTube video about it, huh?
Yeah, it was awesome. And we saw some of their work increasing in our registry. They increased awareness on and off campus. They were amazing.
Lots of. Lots of. I know, so we always say one person can make a difference. They pull their efforts, it was seven women making a difference and they get it.
So I love it. So we'd like to give you those updates on what's happening here in Louisiana. We love to hear from you as well. One of the things that you can do to be part of our team is that you can share this podcast.
We try to make it as easy as possible to find, share, like all those things, right? That's right, Laurie. You can find us on Apple Podcasts, Google Play, Pocketcast or whatever your favorite podcast app is. Kirsten, I like that sound.
Boom, boom, boom. All right, and on social media, we donate live Louisiana if you're on Facebook, if you're on Twitter, Instagram, at donate life, LA, a lot of what we talk about here, you can see there and get more information. I see Sally sharing a bunch of our stuff in Kirsten too. We like that.
Absolutely. And don't forget, you can reach us on my phone. 504, 648, 347, 7, give us a call. Can you give us one more time, Sally?
I can. 504, 648, 347, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, 7, She didn't even look down like she knows earlier. By memory. I mean, I don't like to take that a year.
I love it. Do we need a jingle? Definitely. You know what?
I think I need my own theme song. Oh, yes. She's been talking to Joey. We got to stop that conversation.
Come to our side. Leave the dark side, Gears did. But we have a power pact show for you today and we hope that you stay along for the ride because some interesting things popping up that you will want to share. Yeah, Lori, today we've got some really great information.
We've got Dr. Mass from the University of Miami and she's going to be sharing information about brain donation and all the wonderful research that's happening in that field. And I'm very interested to hear what Dr. Mass has to say about the research into psychiatric disorders.
I think that there's many, many folks and families, particularly too, whose loved ones that suffer from traumatic brain injuries, schizophrenia, depression, different types of disorders like this, that this may be just a phenomenal breakthrough in helping these folks have a much better life in the future. So I'm looking forward to hearing about that. Yes. We'll get to ask questions and maybe you'll hear something that you want answered who want this to be interactive so you can actually email us with your questions, but very interested in what's going on today.
I am looking forward to what's coming up on the podcast, a quick pause guys and more of the gifted life. On this episode of the Gifted Life, we're talking about donation for research. Now we've touched on this topic before here on the podcast, namely, neonatal donation, but practice has grown. My goodness, donation for research provides scientists with crucial organs and tissues to conduct studies on disease processes.
And today we focus on brain donation. So we brought in the Lopez Top Gun to help us understand, Miss Tina Medair. How are you? Good.
Glad to be here, Lord. Thanks for coming in the studio. She's Lopez, research manager. We're also going to talk to Dr.
Deborah Mash of the Brain Endowment Bank at the University of Miami. She joins us by phone. Hey, Dr. Mash.
Thank you for inviting me. Hey, Dr. Mash, this is Kirsten. I'm so excited to have you on.
We first met at AOPO, the Association of Organ Procurement Organizations a few years back. And I remember running through the exhibit hall to grab Tina to put you two together and we've been excited to work with you ever since. Make that connection. So these kinds of partnerships are so important because I think there's not anyone in any family that hasn't been touched by a brain disorder, whether it's serious mental illness or depression or addiction, anxiety, neurodegenerative diseases like Alzheimer's or Parkinson's.
And now with the rise of autism and autism spectrum disorder, even our children are at risk. So how do these partnerships getting the information out, engaging the public in our mission is so very important. Dr. Mash, I'm a mental health professional and I have worked with folks in the past that have persistent and severe mental illness.
And I cannot imagine that these families would not be so grateful to know that there may be, if I can say, a light at the end of the tunnel perhaps for some of them in the future. You know, most people understand when you do organ and eye and tissue donation to give life, to give sight, to improve the quality of life for people who suffer. But a brain donation is something a little different. It's a gift that supports the next generation, your children and your grandchildren.
And that's why we call it brain endowment because it really is a living legacy. It's something that will make a difference because the research can't go forward without actual studies of brain tissue donated to support the scientific community. At the University of Miami, we are one of six designated National Institutes of Health by Repository. And what that means is we have gifted brain tissue that can support literally hundreds of qualified researchers, both in academic medical centers as well as in the industry.
These studies, whether it's looking for a cure for Alzheimer's disease and the associated dementia, we're trying to understand what goes wrong. In autism, we don't have enough tissues. We just don't have enough tissues to support the research. Autism now is affecting so many young children.
If the numbers are staggering, when I first began in the program when we were funded by the National Institutes of Health, we estimated from the Centers for Disease Control that about one in 88 children were affected. We now know that the numbers were for that. It's one in 44 boys. Really?
Today on the spectrum. Why is this happening? What is putting our children at risk? Is this something that's happening in utero?
Is there a genetic component to this? Is it in the diet? We need to understand that. Dr.
Masch, can you explain to our audience how you go about getting the brains to do these things? People don't know that they can donate brains. Most people, myself included, have registered to donate life, and it's on our driver's license. I'm an organ donor.
When I pass away, if my tissues and eyes are useful to help others, I make that gift. But people don't know that they can also donate brains to support research. Some people actually have a brain disorder during life, whether it's depression or a risk for some disorder that may even be in their family. We're usually one degree relative to somebody who's affected in the family, whether it's a grandmother or grandfather or an uncle or an aunt or a sibling or a brother or a sister.
We may have people in our own family that are affected. So the genetics has been very important, and we're moving towards personalized medicine in a big way. Why is this important? The brain is the next biological frontier.
We've learned more about the human brain in the last 20 years than throughout all of human history. So by parting with LOPA, this expands our network. We're located at the University of Miami, and we have an extensive network working with medical examiners and other organ tissue procurement agencies, but we need to expand out because they're simply hard enough brains donated for research. So in order to get the ones that are in short supply, like children who may die for natural causes that are normal healthy, unaffected children or a child who may be affected with a neurodevelopmental disability, we need to expand the network.
Same thing for serious mental illness. We don't have enough brains. And one of the big areas that are very important right now is understanding stress and the nervous system. We all have stress in our life.
We have multi-generational stress. I know I myself and my own family. Yeah. Multi-generational stress on both sides of my family.
Now, me personally, I'm what would be called resilient. I've had traumatic stress in my own life, but that hasn't caused me to have a disability. In fact, it's made me stronger. So there's probably something in my DNA that confers my ability to withstand stress.
Hey, Dr. Masha Sestina. I just wanted to let you know that we are really happy that we got to meet you and started working with you on this before we used to get emails and phone calls from families that wanted to donate brain and they didn't know how to do it, and we really didn't have a clue either. I think that's exactly right.
People simply don't know that this is possible. And so working with LOPA is very, very important for us because you're helping to educate the public about the importance of brain donation. In addition, I'm very interested in your talking about research regarding combat related PTSD and how stress affects first responders. Would you please elaborate a little bit more on that?
There is amazing research going forward now to help our veterans. And I think everyone who's listening knows that our veterans who are returning from Iraq and Afghanistan, many of them are affected with major depression, anxiety, the effects of being on the battlefield and suffering from battlefield stress. In addition, many of them have had a traumatic brain injury. This is merely adversely affecting our veterans.
Working together with the veterans administration, we're able now to access gifts of a brain donation from both civilian and military, by the way, who have been diagnosed with PTSD post-traumatic stress disorder. So not just combat related post-traumatic stress, but also those of us civilians who have been diagnosed with civilian who have had repeated stress. We know that stress affects the nervous system in different ways. For example, puts people at risk for addiction to drugs and alcohol.
So we need to help our veterans. And this is one way we can do that. Dr. Bache, does it change the physiology of the brain or is it more on a cellular level?
That's a great question. What we're learning is that stress, because it disrupts the neurochemical signaling in the brain, can have long-lasting changes on a variety of proteins. The brain is made up of the fundamental building block of the central nervous system is what is called the neuron. And just to give you an example, there are more neurons and neural connections in our brain than there are stars in the Milky Way galaxy.
So stress is recorded. Stress is recorded. And stress is not only recorded in our lifetime in our brain, but there's also generational stress that's actually laid down in our DNA. The DNA is what we inherit from our mother and our father.
We inherit the chromosomes from mom and dad. And that's what makes it who we are. It gives us our eye color, it's how tall we are, it gives us our intellect, our personality, it's better, et cetera. But it also records into the DNA.
And those types of changes in the DNA are what are called epigenetic changes. So it's above the DNA. So the stress, if my relative from my father was an alcoholic or my mother had serious stress in her life, maybe it had been in a fire, for example, or there were repeated stress from, you can imagine, people who suffered in the Holocaust, for example, that is all recorded in the DNA. And that's handed down.
And it's interesting in the Bible, it says the sins of the father visited on the sun. That's epigenetic. That's coming down from multi-generation. This is fascinating.
I've never heard that you could actually pass down stress. You pass down the three of the DNA. That's amazing. So human experience.
And by the way, this is important too for our diet and nutrition. Because if you eat toxins, if you're mother ate toxins, and there are changes in the DNA, then that can predispose to effects on your central nervous system or can you predispose to cancers. I all got to think in here. I love it.
No limits, obviously, when it comes to this research, and we need folks to sign up, obviously, so that you can continue your work. And preparing for this interview, I read that you say things as you're going to support the generation if you sign up to be a brain donor. You're leaving a living legacy. We have these citizen scientists out there.
Not sure, right? That is, and we learn from our donors and our donor families. Our donor families are so important to this mission. They truly are citizen scientists because they know the history of their loved ones.
So when they make the gift of a brain donation or an in tissue donation, they're communicating. They're teaching us. We're learning from them. That's amazing.
So it's so important. And we work closely with the families. That's a very important part. And we also provide back to the family, a neuropathology review.
So some of our donors, for example, may have a loved one who suffers from Alzheimer's or Parkinson's disease, and they want to know what was really going on with mom or dad. And we can get that information and provide it back to them. That's fascinating. That's information that I think a lot of people would like to know.
And I think people are also going to want to know, is there costs involved with this? Interfere with the funeral plans because we get these questions out in the community about regular donation. So what say you, doctor? A brain donation is not interfered with a family's plan for burial, funeral or cremation.
You can have an open casket and there's absolutely no cost for the family. All of the costs associated with the gifts of the brain, tissue for research are paid for by our program through the generosity and the funding of your taxpayer dollars at work because we're funded by the NIH, by the National Institute of Mental Health, the Neurological Disorders Institute, as well as Child Health and Human Development. So, doctor MASH, just to be clear, you can still have an open casket funeral? Absolutely.
And you know, many years ago, when I was first starting out, and I'm the founder and director of the program here at the University of Miami, we had a donor come in through the tissue bank. Obviously, we protect the identity of our donors, so everything is de-identified. But as I was going through the file and reviewing the file, I realized that we had a gift from a person who was my dad's very best friend during life. I felt so honored, but was more remarkable, if I had gone to the funeral the night before, and this was an Italian gentleman who had an open cap.
My goodness. And so we're sitting here, so Kirsten, Sally, myself and our jaws are dropped and, you know, we're in awe and Tina sitting here like, told you all. I told you all. I thought it was pretty cool.
So, Tina, when you hear this stuff because you are a research manager and you're always kind of pushing that glass ceiling, what does this all sound like to you? Progress? It is progress. And the first time I seen Dr.
MASH speak, the only thing I could think of was, I want to help her. Just listening to the incredible studies. Well, the passion too. Listen to her, yes.
Yes. Yeah. I came up to her after the meeting and waited for everybody else to get out of the way. And it was a packed room.
And then when I talked to her, and I said, Dr. MASH, I'm in New Orleans, and I want to help you with this. Wow. And we've been working together since.
And working very well together, I might say too. Nice. Your organization has really set the bar very high for all partners. And no doubt about it.
The work that we're doing with LOPA is going to be a tremendous advancement for this mission. We've reported on this to the NIH, and they're very excited and very grateful. So, on behalf of all of the scientists and the family members, I want to thank you today, publicly for helping us to get the word out and for supporting this mission. We can't get the answers fast enough.
And the gifts of the brain to support medical research, your gifts may be the one that leads to that next scientific breakthrough. Wow. Thanks for your passion. Thanks for dedicating your life to this.
Maybe you're listening and you want to connect with Dr. MASH, the work that she's doing. MiamiBrainBank.org. That's MiamiBrainBank.org.
Maybe you prefer to call 1-800-UM-Brain. 1-800-UM-Brain. Think about the possibilities. And Lori, one other thing for our audience.
Brain donation is not automatically part of becoming a registered organite tissue donor. There is a separate registry. It's important for some people to be able to register in addition to being an organ donor. And for those who would like that opportunity, we're available here to help with that registration process.
And you can contact us directly through our website or through our phone numbers. So we have people here who can help discuss this with the family and make that gift a reality. Alright, so that's MiamiBrainBank.org, our 1-800-UM-Brain. Or maybe you heard something that you want to know more about.
You want to go through us? That's okay too. Info at LOPA.org. During the gifted life, we have been talking about the brain and research, while in our family support segment, even more for you.
Yeah, Sally and I were talking earlier, and she found some really fascinating information while she was preparing for the show and researching Dr. MASH. Fascinating. Yes, it is.
Wow, it's out. What you got? Well, you know, as I was reading some of this information on the Brain Research website, I found this article called Stepping Out of Your Comfort Zone may improve brain health. And it's similar to Two Stepping.
Okay. And that might be something that would be helpful for people who are kind of sedentary in their lifestyle. Because one of the challenges it seems for older individuals is that they don't do as much as they perhaps had done when they were younger individuals. And so it's not your park with the University of Texas was for vital longevity.
Interesting title, huh? So that seeking out stimulating activities that will lead to more engaging experiences in life. But so she looked at folks who were attending classes that was just, you know, your normal daily routines that perhaps senior citizens may go to, but they found that if they just stayed home and did word games, that wasn't quite enough to stimulate the brain. So the Sudoku's not enough, huh?
No, that's not enough. So those who learned a skill that they've never tried before. No, there's the trick. If you've never tried it before, it causes the brain to have to kick into gear, so to speak.
And find new ways of being able to accomplish the task at hand. Like if you've never taken a dancing lesson, skydiving, absolutely. So are you saying that old dog, Ken, learn new tricks? Yes indeed.
Yes indeed. I'm thinking and actually the study was published in the Journal of Psychology Science back in January of 2014. And said that the thing that they're finding is social time does not benefit people. So for those of you just socialize, this is not going to be working for you.
That they find that if you do something new, stepping outside of that comfort zone, that it causes the brain then to become much more active as well, physiologically, you know, physical activity of course, but says that they found then that it does help prevent the brain from aging quite as quickly. Now does this extend across the board to everyone? No, probably not. But for some of us, I'm getting excited about it because being an older individual, I'm thinking, well thank you very much, Laurie.
I'm thinking that there is possibilities for me here in the future. I have someone who's very close to me, been working for 39 years, and is nearing retirement, and he says, I am scared to do that because he said every day I deal with all of this information information, and what's going to happen when I go to nothing. He said, you know, there's a camp and you go fishing, but what's after that? So he says, I am a little scared.
So I might say the skydiving thing, he might like that. I might bring that back to him. Yeah, Laurie, maybe you can just tell him to go two step in out of his comfort zone. And he might do that.
He might just do that. But I think what I'm hearing from Sally is that the gifted live podcast crew should do road shows to experience new places and new things. Well, that might be part of it. Tells you, Sally, I mean, you said you need a new simulation.
Yes. So it would really be, I mean, well, yes, it must be all about me. It's my benefit, wouldn't it? Well, hey, hey, volunteer getting involved.
There's lots of things that we do here in the state and our partners across the country are doing it as well. A lot of folks are saying, oh, public speaking, I can't do it. Or I can't participate in that. I've never done it before.
So maybe this could be your thing. Yeah, visit our volunteer page, sign up today and baby steps, baby steps will get you involved today. It's now time to honor a hero. Yes, Laurie, today's hero is Colton Wiley Chrome.
And this comes from his mom, my son, my hero Colton. My son Colton was taken from us way too soon at the age of 18. He had just begun his senior year of high school. He loved to hunt and fish and did so every chance he had.
His family and his friends were most important to him. He was kind and would give you the shirt off of his back. His loving and giving nature shined even in his passing as he was able to save the lives of four people. My baby made me so proud when he made the choice at the age of 16 to become an organ donor.
His love missed by so many people. He will live in my heart forever. And you can see Colton's picture along with our other heroes at lopa.org. And now we pause to say thank you to Colton for the gift of life.
In our question and answer segment, we had to call in Lopa's research manager again, Miss Tina. Hey, ma'am. Hey, we appreciate you coming in. This is what we got for you.
I've heard about donation for research. How does it work? If I'm a registered organ ion tissue donor, does it automatically mean I can donate for research? What's that you?
Actually, it does. When you say yes to donation, you are saying yes to research also. Any organ than tissues that can be used for transplant, that's what we're going to do. We're going to transplant first.
But when you have something that due to quality, cannot be used for transplant, I'm going to try to find a home for that. With a researcher, we have many researchers that we work with that are studying specific diseases or disease processes. Tina, what times we get questions about whole body donation too? How is that different from, is that the same thing as researchers that different?
It is different. Whole body research is typically your medical students. They're learning anatomy and sometimes learning surgical procedures. And that's different from the research because the researchers are really looking for cures to diseases and ways to improve treatments.
It's new drug therapies. It's studying how a disease process develops. It's a study of normal tissues comparing them to disease tissues. So there you have it folks.
Any question you may have about research or whole body donation, you can give us a call if we don't have the answer. We can get you the answer. Well, Coltina, we'll call Tina. And that phone number is 5046483477.
And hey, if you're listening on Apple Podcast and you like what you hear, please leave us a rating. It helps others find this podcast and that means they're learning about donation. Thank you. Wow, what a power-packed, gifted life podcast today.
I know Lori, we had some wonderful guests. I want to thank Dr. Maast for taking the time to come on and sharing so much wonderful information about the brain and the research that they're doing with the brain. And we'd like to thank Tina for helping us find new partners like Dr.
Maast and always pushing the envelope and helping us and making advances in organitutition donation and research. And we really want to thank you, Kirsten. Yes! We don't know where Joey is or what happened to him.
All points bulletin. Where is this dude? If anyone out there has seen him, please let us know. But otherwise, thank you so much.
Info at Lopa.org if you've got a Joey update. There we go. I'm glad I'm glad you want to give it a sellout. Well, don't tell him, but maybe we can later.
But you are quick on your feet. You're in the know and we appreciate you. You're filling in. You're always fun.
Always love being here with you. And she feeds it. I feel like that. You're one of our faves, Kirsten.
Alright, we appreciate you guys listening. Please share the podcast. Our goal is to educate, to increase those donor registries and to save more lives. And you can be our partner.
Maybe you were listening and it prompted you to register as an organitutition donor. You can do that anytime at registerme.org. Do me a favor. Go out today and do something you don't normally do to help us make life happen.
You can do it. This is a production of the Louisiana Organ Procurement Agency, Lopa. Gifted Life is hosted by Lori Steele, Joey Buudro, and Sally Gensri. Our producers are Kirsten Hines and Shalom Caraway.
We are recorded, engineered and mixed in our Metery, Louisiana studio by Troy Perez.