Hello, and welcome to the Gifted Life Podcast, where we have conversations about Oregon, Tissue, and I, Donation. I'm Lori Steele. I'm Joey Boudreau. I'm Sally Gentry.
Donate Life Month, guys. Come into a close. What a whirlwind. Wow.
And it's been amazing, right? The blue and green pictures, the stories, new folks signing up as our tier, a registry being increased all to save more lives. It's so incredible. But listen, the month's not over yet, right?
So share your stories, get involved, use social media to spur positive change because you can do it one person and make a difference. And it could be you right there. You listening, right? Also, in this episode of the Gifted Life, we're talking about expanding our focus when it comes to donation.
Yeah, for so long, we've been trying to maximize the amount of organs that have transplanted and save lives through Oregon's transplantation. Lately, the last few years, nationwide, we've had a push to maximize those that aren't able to be transplanted, those organs into research opportunities. Also, I'm going to talk about is grief always tied to death. Ooh, okay.
Something to think about. All that and more here on the Gifted Life, and we want all of your friends, your family, to hear this as well. We want you guys having these positive conversations about the donation. We want to share your stories and give us a call.
504, 648, 3477. We'd like to hear your story or your question. That's right. We could use that audio right here on the podcast.
We have lots to get to. Sounds like? Do it. So, anyways, for this segment, we are focusing on organs and tissues for research.
Yeah, Laurie, as always, we try in every situation to maximize at loved ones' gifts by transplanting as many organs as we can in tissues. However, there are certain situations where transplant is not an option or that Oregon may be not suitable, or maybe there's just a better option for research for that particular tissue. In every situation we try to maximize at loved ones' gifts. And you know, too, when we follow up with donor families post-recovery, they express a great deal of interest in learning that some organs may go to research and how it can potentially help or cure some diseases in the future.
So, the very positive outcome and that respect. Yeah, and we are kept up to date because of our research guru, not your real title. Tina Medair is in the gifted Life Podcast Studio. Hi, ma'am.
Hi, she is Lopa's research program manager. So, when it comes to research and the new findings and things that we are learning because of organs and tissues donated for research, I love hearing it from her because you can feel the heart in it and behind it. So, let's talk about what we do here at Lopa. Well, like, go away with saying, whenever we have organs and tissues, I can't go for transplant.
I try to find homes for them with researchers. We have a lot of great researchers that we work with that will actually kind of get the researchers together for us. We deal a lot with companies like IIM and NDRI and Promthera. They have hundreds of researchers.
We also deal with a lot of local researchers, our local doctors. So, the tissues are not going to waste. It gives our donor families hope. You know, their loved one, not to save a life.
You never know where the research is going to go. I mean, you have the possibility to save hundreds, thousands. Right, and we're about to delve into that. Dr.
Mark Atkinson joins us now by phone. He's with a network for pancreatic organ donors with diabetes. Hey, doctor. Hey, how are you today?
Good. Thank you so much for taking the time. We know that you were busy and we know that we have a lot to learn from you today. Well, I've enjoyed listening to this opening discussion and to just begin with two important points.
One is that we are so appreciative for organizations like WOPA. We view research as a team-based effort and that there's many, it's the old notion about it takes a village and organization such as yours is such a key component to what we're trying to achieve in a mission. So, on behalf of all of us, thank you for the way you approach this. The second thing is, as you were talking about transplant versus research, so important.
And I just want to emphasize one thing that I maybe was a novel thought I had while listening to you is that when organs go to research, it's really an investment in the future. Meaning a lot of transplants, you have these, you know, recipients that are, they're like changing events immediately. And sometimes research, they'll be an immediate impact. But in some ways, when you donate organs for transplant or research, it's balanced and there they'll be immediate benefits and then those that you're banking on based on achievements that occur over the years.
So, we're very thankful for the organ donor families as well as organizations such as yours. Can you tell us a little bit about what the overall focus is that you guys do? Sure. So, the focus of N-Pod is essentially to answer two questions.
One, why does type one diabetes develop and maybe I can explain that more in a little bit if you have more interest. But the second way, the reason is to try and take that knowledge of why type one diabetes develops and turn it around into a way that you can prevent or cure the disease. And the study of human tissues and organs is key to that. If one of the things that we've seen over the years is that most of research up until about a decade ago was on mouse models of type one diabetes, meaning people studied mice.
And they found literally hundreds of ways that you could prevent or cure diabetes in these mice. As of today, as of 2018, there's zero ways that you can prevent or cure type one diabetes in humans. So, there hasn't been a good what we call translation of mouse studies to humans. And we think through studies of human organs, we've understood why.
This is that we were learning in a sense false information from mice and it just shows the absolute need to study human tissues. So, what kind of breakthroughs have you guys come to as far as seeing what the true cause of type one diabetes is? Right. So, type one diabetes just as a shortest of backgrounds is an autoimmune disease.
So, disorders like systemic lupus arithymatosis, rheumatoid arthritis, multiple sclerosis, these are diseases where the body's immune system for reasons unknown, grows in and destroys its own self. And in the case of type one diabetes, it destroys these specialized cells in the pancreas that are called beta cells. They secrete insulin and help the body regulate its blood glucose levels. So, when we've looked with N-POD and tried to, we've developed models over decades about how type one diabetes develops.
Through studies of N-POD tissues, we found that many of the what I routinely call dogmas about the disease were wrong. I can roll off things all day long about this. One of them is actually a smaller pancreas. And so few people know about this and this was not understood.
But if you have type one diabetes, we found through, again, donations of organs from local and others that the type one diabetic pancreas is about a third to a half the size of what a normal age and the body mass index mass individual is. We're trying to explore that to figure out why the pancreas is smaller. Another thing is that we found within PODIS is that we're finding through new techniques that the beta cells, these insulin screening cells, probably contribute to their own demise. It's not just the situation of straight-automunity, but they contribute to their own demise.
And it's opening up whole new avenues of therapy and how we might try and predict disease and develop therapies. Now that you have a better understanding of some of these issues that people have that cause the diabetes, are there certain things that you are seeing that may lead to breakthroughs on how to cure it? Right. So, I'm going to split that into two questions.
One thing that in terms of the clinical implications is it's often been thought that there's just one type of type 1 diabetes. But by examining tissues provided from organ donors, we're now believing that there may be many types of what has commonly been called type 1 diabetes. And there's probably one form of disease that occurs if you're say under the age of five. There may be another form of the disease that develops in childhood and adolescence.
There'd be another form of type 1 diabetes that develops in early adulthood. And then this form of type 1 diabetes that occurs later in life. And so this has been another impact of studying the human tissues is that we now believe type 1 diabetes is not just one single entity. It's a syndrome.
Another thing that we found is that, and I've been in type 1 diabetes research for 35 years now, the traditional thinking has been there's been no overlap between type 1 and type 2 diabetes in terms of how the disease develops. But now through studies of the pancreas, we're actually finding that many of the features of the type 2 diabetic pancreas are present in the type 1 diabetic pancreas. So this too is opening up new doors of what I'll call crossover, where we might have type 1 diabetes informing type 2 diabetes in type 2 diabetes research informing type 1. And I know I've only spent a couple minutes here, but for somebody that's been in the field as long as I have, these are major changes in minor thinking.
So now that you guys have a much better understanding of the fact that it's not just one type of type 1 diabetes and that changeover that you mentioned between 1 and 2, you've got clearly a better understanding of that. So what's next with either curing or possibly preventing the type 1 diabetes in type 2 eventually? And that's a spectacular question. And I think what we're seeing is an intersection if you would.
It's almost like the areas of a highway where you don't necessarily want to drive through them, but we have a bunch of interstates all coming together in a loop. And what I think you have is the intersection of what we've seen with human pathology by studying organs and tissues. You have this intersection of genetics, meaning we've heard about the human genome sequencing project and how easy it is now to determine risk for disease and what type of disease you have to do. Genetics research, another avenue that's coming in is this whole notion of personalized medicine, meaning that if you as investigators understand how drugs work on certain pathways, once all of these forces come together, I think that we're going to be able to identify in the future how to handle and treat patients best for their disease and try and provide them the therapies that are optimized for the type of diabetes they have.
And so, but this is going to take a series of understanding of how type 1 diabetes develops in that individual along with their markers that are in their blood and understanding, again, the mechanisms that may lead to how the disease develops. I have a question for you on these different like 23andMe or Ancestry.com where people submit a DNA sample and they come back and they give you certain markers or variants of what type of diseases you may be predisposed to genetically. Is that something that people can look at? I know this is a little bit off the subject perhaps, but if they see this showing up on these tests that they get back, would this be something that would lead them to want to have further examination of what's going on with them?
Yeah. So, the answer I'm going to give hopefully is not too long in complex, but I'm going to just begin with a little analogy, meaning I'm 57 and I remember when the first cell phone came out and it was in this big bag and it was contained in batteries and whatever. Then we moved through that and then it's going through evolution of the ears and now we have our smart phones that essentially are magnus to our body 24-7. I think that genetic information is somewhere along that phase, meaning we're not quite in the big 12-pound bag with a battery, but we're not at the same time at the smartphone level that we're always working at now.
Meaning that 23andMe, there's been recent actually action within the last few weeks between the FDA and 23andMe in terms of what they can inform and what they can't inform on. Some aspects of genetic screening are spectacular. We've, every state of the United States has been working for years on newborn screening, identifying genetic errors at birth. So, if you have a Diet Coke and you can't have our smart team and you're because of the notion of phenylketonuria within days of birth, you have a genetic screening and it impacts you.
And then it's been the same for a disorder like cystic fibrosis. So, there's some genetic tests that are very mature. Then when you get into the 23andMe area, again, it goes through and they're great. And on a Black Friday, I want to do things that I can relate to people.
So, on Black Friday last year, I did the 23andMe test in order to send it off. And just so I could say to people, I did that too. And I came back and I was pretty happy about it in terms of seeing what they said I was at risk for not risk for, but there was a challenge in that it said you were at low risk for baldness and your listeners certainly can't hear this. But let's just say I'm one step short of chrome dome.
So, genetics is there, but it's not perfect and it's still maturing. I think in the case of type 1 diabetes and type 2 diabetes, we have some interesting data, but we're still as a community. And this doesn't just relate to diabetes. It relates to cancer, it relates to infectious disease.
We're still trying to figure out how we can take this genetics information. And I'll just end by saying again, go back to that cell phone analogy, meaning eventually I think we're going to get there, but we're not there yet in terms of confidence. But this, again, comes back. We'll only get there quicker through the work of organizations like yours.
Do you ever share the results of your research with families? Yeah, so this is that too. All of these are great questions. I'll do something that I'll share and I'll do it in a way that hopefully will comfort people, meaning we operate in a world today where confidentiality is of both the organ donor as well as their family members is key.
And part of our effort and we spend a great deal of time is to try and protect the identity of the individual organ donor and their family. Now, every now and then, as you know, there will people that will do TED talks or YouTube talks and write books and go out and share their experience. And that's fantastic because it raises awareness about the importance of organ donations for transplant research. On the other hand, in part is quite large.
We have a support now almost 250 projects in 20 countries around the world. And so we're in some ways, and I say this with full respect, we are a bit like Memphis is for federal express, meaning the organs will come from all around the United States here to little old Gainesville, Florida with our 2-gate airport. But we will then in turn send them around the world and we need to make sure that there's no way that the identity of the organ donor and their family can be observed by people. So we create what we call a firewall to prevent that.
So we respect the organ donor families and appreciate them greatly. And if requested, we'll communicate with them, but we also want to protect their rights and respect their sacrificial gift. Yes. Well, I am excited about the future.
When we started, you said research is basically an investment in the future. You've already learned so much. You know, we're looking forward to see what comes on the horizon. So we appreciate you, Dr.
Atkinson. Thank you so much for joining us. Thank you. Yeah.
And Tina is still here with us. This is Lópa's research program manager. What's your takeaway from listening to all that the doctor had to say? I can listen to this every day.
I'd love to hear our researchers speak about what they're doing. They get so passionate about it. That's how I learned what's going on and let you guys know. That's great.
And so we talk about organs and tissues for research, Joe and Tina. This happens during the donation process, whether they can be used for transplantation and research. Right? Does that happen?
Yeah, it all takes place in the same time frame. You know, that family has that opportunity to say yes to both transplant and research. So it all takes place in the same time frame. And of course, we try to maximize that person's gifts through either direction.
Yeah. Well, I appreciate our guests. I learned a lot, Sal. You look like you were blown away too by the information.
Very interesting. Yeah. And results of all of this can be just so phenomenal for future cures, prevention, great information. Yeah.
And like the doctor said, research is team based and it's an investment in the future. And of course, we'll keep you up to date right here on the gifted life podcast. More to come. Next up on the gifted life, Sally talks about grief.
Is it always tied to death? Interesting. Yes, it is. And of course, Sally is our resident mental health professional and she's going to continue tackling topics like this.
So what are you thinking? No, no, you're absolutely right. All right. Yes.
Because many times what we don't think about is the grieving that one goes through with say separation, a divorce. Life is no longer what it was. There may be children involved. Lots of change.
A lot of chaos many times in that particular situation. And many times people who have a physical illness or loss of a limb, you know, someone that's been in war or just an accident of any sort, there is that grief or, you know, I can't do the things I used to do. I can't pick up something or I can't get up and walk somewhere. And also the loss of the person who you thought you knew to drug addiction or to just a health through, you know, physical illness of some sort.
And that can come as, you know, the mental agility of that loss and somebody's with Alzheimer's dementia, some sort of accident that's just caused the amnesia state. And how do you compensate for that? Will you, you grieve for it? Because that's just not the way that your life had been with that person or with those persons or for yourself.
And I think too, that you look at there's many other losses. You talk about the loss of again, your pet or a move or. I was thinking when I moved away from my family and I was resistant to change. In June, I was on Louisiana.
I was from do songs great. I was like, yeah, they take you in, treat you like family. And then I moved and said, nobody's. There's no place like home until I started getting out and meeting people.
And you probably cried and you felt bad and you really had that yearning to go back. Yeah. And I think that's what it is. It's that yearning and wanting to have things the way that they had been.
So there's not just that someone has died and I'm going through that grief process. There's so many other things that when you think about it, and when we do grieve for these things, there's just as much intensity as it is when you do lose someone that you love through death. So I think that's something for people to keep in mind that when you're really feeling down and depressed and what am I going to do and you cry or you think no one cares? Well, people do care.
They just don't realize what you're going through. And sometimes you have to tell folks, you know, I'm just really sad because this has happened and I no longer have the life or the person that used to be. Yeah. That's interesting.
I think I went through that now. Well, they're here. So I'm normal now. We don't know if it's normal or not, but I'm not sure any of us are.
There you go. But I like talking about it because it normalizes what some people may be ashamed of because I didn't really talk to people about it. I was just like, pick up your bootstraps girl. Let's do it.
Right. Well, others will think I'm weak. Well, you know the thing is this. You have to be true to yourself.
And once you're true to yourself, you can say, okay, it doesn't matter what anybody else thinks about me right now. I'm just having a very difficult time. So I need to take some space and grieve the way that I need to grieve and then I can go on about my life. I have a question.
After the floods in Louisiana, August 2016, you lost your home. Absolutely. Same thing. Same thing.
Yeah. I mean, I still think about the things that I had wishing I told Joey. I wish I could have gotten some books that came from my mother back when I was in grade school. And as you know, that was many, many years ago.
1982. I wish. But I mean, there's things like that in pictures. Yeah, that I can never recover.
And you do. You have that sense of loss because there are times you, you know, you'll wake up and go, she's, I know where that was. I just sure wish I had it back. Yeah.
But I realized that that's just not the way it's going to be. Yeah. You inspired me after that, a new outlook on life because of how you handled it. Followed your journey with that.
So yeah, interesting topic. You have a topic maybe you'd like Sally to cover info at lopa.org. And we have additional resources for you at lopa.org under the family services tab. And as we do in every episode, we like to honor a hero.
Today's episode's hero is Keegan Parsons. And we learn about Keegan from his family. Keegan had the biggest and softest heart that anyone could imagine a child having. He left spending time with his family and was always ready to go and visit the next person.
There isn't a day that goes by that we don't remember him or miss him. Keegan was loved a whole whole lot by many people and will forever be our hero. And now we pause to say thank you to Keegan for the gift of life. And our question and answer segment.
This time we don't have a question. We had a family, one of our old family's friends that we crossed paths with years ago called into our gifted life podcast hotline. Yes, it was the Griner family and they've traveled the country going state to state promoting organ tissue and eye donation. They were so fun.
So Mike, Sherry, Levi, Chloe, can you imagine they homeschooled these children went from state to state learning not only about donation that state but about those states, which was pretty cool. And for those kiddos, so we stay in touch with them. Following their trek of all the states actually gave out awards from folks that they came across. So in Louisiana, we won for enthusiastic employees and best outside the box thinking because we just had so much fun with this.
They packed everything up into a van and then just went out to explore. So they called in. Let's take a listen to the fun we had. Harry and my family was in Louisiana in 2011 to promote organ donation awareness.
My husband received a life saving kidney and pancreas transplant and you helped to share his story. I'm so thankful for organ eye and tissue donation and what you do to promote it. You guys are so passionate and energetic. I love it.
We've never danced with someone wearing a kidney costume outside of the MV before, but only in Louisiana. That's just one example of the creative ways you guys are saving lives. So keep up the great work. We love y'all.
The Give It A Like podcast episode 81 is complete. We want to thank both Tina Medellar, Lopez, Research Program Manager and Dr. Mark Atkinson, the Director of INPOT, Network of Pancreatic Organ Owners with Diabetes for sharing their knowledge. There's so much that they're doing both from a local standpoint and nationally to invest in the future as Dr.
Atkinson put it, to hopefully not only just save one life but possibly cure or prevent many others from getting diseases. Amazing. Hey everybody, it's still April. Yes.
Yes, yes. More days, get inspired folks, go do something to help make a life happen. There you go. Go out and do something today that you don't normally do to help us make life happen.
You can do it. You can do it. You right there. Listen.
And maybe you're inspired to sign up to be a donor. You can do that right now. Doesn't take much time. Register me.org.
We hope you have a good one.