Alzheimer’s & Down Syndrome, with LuMind IDSC’s Dr James Hendrix | EDB 241
Dr. James Hendrix discusses his work studying the high rate of Alzheimer’s in the Down Syndrome community.
(25 minutes) Dr. James Hendrix is the Chief Scientific Officer at LuMind IDSC. In that role, Dr. Hendrix directs scientific initiatives for LuMind IDSC. A critical element of his role is to establish the nationwide Down Syndrome – Clinical Trial Network (DS-CTN) and to oversee the first clinical trial in the DS-CTN, the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) Study. The LIFE-DSR study is a natural history study focused on adults 25 years of age and older at high risk for Alzheimer’s disease. Dr. Hendrix is also focused on building potential collaborations with industry, academic and government scientists focused on Down syndrome research to maximize LuMind IDSC’s scientific impact. Prior to joining LuMind, Dr. Hendrix was Director of Global Science Initiatives, at the Alzheimer’s Association.
For more about Dr. Hendrix and LuMind: https://www.lumindidsc.org/
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DR HACKIE REITMAN (HR):
Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. Today we’re going to get down to it. We’re going to get down to all about Alzheimer’s, Down syndrome, LuMind, and we’re going to be speaking with Dr. James Hendricks, who specializes in a sub, sub, sub specialty of dementia relating to Down syndrome. But as we’re going to see, this opens up a lot of doors. Jim, welcome. Thanks for coming. Thanks for having me. It’s great to be here. So, I remember when I spoke down at the first ever NDSS Adult Summit, I was astounded at that time to find that almost half of them were going on to get Alzheimer’s disease. And the last time you and I spoke, I think you said, “Hackie, you’re a little bit out of date, it’s up to 60%”. Why don’t we use that as a starting point.
DR JAMES HENDRIX (JH):
Though some recent literature is now indicating it’s more on the order of 90% of the population by the time someone gets to be 68 years old. That’s just a huge number, so compare that to the general population. Alzheimer’s disease most likely occurs in people 65 and older. If you’re 65, in the general population, your risk of Alzheimer’s disease is between 10 to 12%. So, you know, whether it’s 60, 70, 90%, it’s still a crisis situation in the Down syndrome population.
HR:
Now, why don’t you introduce yourself properly, because I didn’t give all of your accolades and degrees and everything else.
JH:
Well, I have a PhD, so that’s the most important thing to note. I’m not a medical doctor, I’m a scientist. I worked many years in the pharmaceutical industry, about 20 years before leaving the industry, and I worked for the Alzheimer’s Association for about four and a half years on the science team there, and I’ve been with LuMind IDSC Foundation, as the Chief Science Officer at this organization, for about two and a half years. LuMind IDSC is focused on research in Down syndrome and trying to come up with new and effective treatments to improve the quality of life for people with Down syndrome and increase the lifespan, if possible.
HR:
Let’s talk about the terrific people at the Special Olympics because they tackle socialization, exercise, education, about diet, and all of the things. Socialization, I think you would agree, is one of the most underrated things about dementias of all kinds.
JH:
Yeah, I think, you know, the thing with Down syndrome and Alzheimer’s disease is it’s really driven by the genetics. So people with Down syndrome have three copies of chromosome 21. That’s why they have Down syndrome. We know that Alzheimer’s disease is likely caused by what’s known as amyloid plaques and tau tangles. Amyloid is from a group of peptides known as amyloid beta, now produced by the gene, the amyloid precursor protein gene, and the amyloid presursor protein gene is on chromosome 21. So basically, people with Down syndrome are producing more amyloid than people in the general population because they have this extra dose, if you will, in their in their genetics. So that’s why they get Alzheimer’s disease at such a high rate, and it’s such a earlier age. Now, diet, exercise, socialization, all of those things might help delay the onset of Alzheimer’s. I certainly think it improves your quality of life in many, many ways, other than preventing, maybe delaying, the onset of Alzheimer’s disease. I could go on and on about those things. But, I think in the case of Down syndrome, it’s not a matter of “if”, it’s probably, for most people, a matter of “when”. Is it going to be, sooner or later? And, that’s why we need new treatments, to make it, so when I say later, maybe it’s when you’re 120 years old, if you’re lucky to live that long. Nobody lives that long. So basically, you die without ever having Alzheimer’s?
HR:
What is the segue from that into the medical ethics of the CRISPR and other technologies becoming available?
JH:
Well, so the CRISPR gene editing, right now the technology is only able to edit a single gene, so if you have a person who has a single genetic mutation, one single gene, then the CRISPR could, theoretically, use that technology to edit that gene and eliminate that mutation, and that person could live normally. For an entire chromosome, there’s a different technology that you would have to use. However, I should say, if you were able to silence one of the top extra copies of APP, the amyloid protein gene, and a person then, in fact, only had two copies of APP, then their risk for Alzheimer’s disease wouldn’t be zero, but it would be the same as you or I, right? It would be the same as anybody that has only two copies of APP. So that’s something that maybe could happen. I think we’re still a ways away from that, but from an ethics point of view, I think the question is it always comes down to the risk benefit, if you’re focused on the treatment of a disease versus the things that are enhancing somebody or fundamentally changing somebody. So you know, for you and I, if we suddenly wanted to edit our genetics so that we had hair on our heads, I’m not sure that the ethics would would justify that kind of a risk. But if you’re talking about a deadly disease, and there was recent literature that showed that Alzheimer’s is the number one cause of death for adults with Down syndrome.
HR:
Well, that’s tough stuff. Let me ask you this, you brought up this interesting mechanism for the CTE. Back when I was boxing, and getting all this publicity on Good Morning America and everything, because I was an MD, people think I know about this stuff, and I’m just an orthopedic specialist, you’re PhD. I’m just a Johnny come lately to all this, but back then, when I was a young man of 40 or 50, that was, like, so old when I was boxing, you know, but people used to send me literature from all around the world because they thought I knew something. One of the most interesting set of papers I got was from Norway, and they, they had a hypothesis they were testing, professional boxing was illegal in Scandinavia, so they were testing the hypothesis that boxing should be outlawed because it causes changes in function in your brain, and so, they designed a really neat study with all these different sports, okay? Boxing came in third. Soccer came in second. And, I would never have guessed in a million years what came in first, sprinters, female sprinters. Why was that? The only thing I could think of, and I haven’t seen it reproduced anywhere, is what you were just saying about the mechanism. You’re going from zero to 100 miles an hour in a second, and your brain is sloshing around in this fluid. But, they were measuring all different changes, like changes in handwriting over years. I wish I had the actual citation for you, but it made me think about that mechanism and the way your brain, which, by the way, made me feel in boxing, that head gear made sparring worse because you bounced your head around. It protected your his skull, but your brain would bounce around more, so…
JH:
Yeah, I’ve not seen that data. I’ve seen some data on youth, or high school level athletes, in the US, and the number one risk is American football. Number two was girl’s soccer, and there’s a hypothesis that’s tied to neck strength. So, if a young girl is running down the soccer pitch and slips and falls backwards, their head slams into the turf, you know, she’ll get a concussion, but if she has a stronger neck, she might be able to brace herself so her head doesn’t snap back. They call it the bobblehead effect. And, so one of the ideas was that, that we need to encourage neck strength in the exercises as a way of improving the safety. And, of course, the other areas that have been talked about a lot are heading to the wall and corner kicks, where kids jump and elbow each other and maybe elbow each other in the head. So, there are things that you can do, I think, to help with the safety of some of these sports, but you have to understand, you have to have a better understanding of what the causes are. Right? Just like what we were saying about American football… okay, yeah, you can, you can make more high tech helmets, but if you don’t actually solve the problem, what are you doing? And you talked about sub concussive blows and repeated blows. I also worry about that. And I worry about the kid. Matt, you were an athletic kid, I’m sure. Imagine the kid that plays football in the fall, ice hockey in the winter, and lacrosse in the spring.
HR:
And slip some rugby in there, too.
JH:
Yeah, exactly. And, so you’ve got a coach, and each one maybe is different from the other one, and maybe they’re trying to protect their kids or doing the right things or trying to protect them and hold them out and not give them too much contact, but the the cumulative effect of all of those sports on top of one another is, could really be, detrimental down the line. And, so, I think we we have to think about that too. So it’s a big issue. There was also a paper out of Sweden, from several years ago, it was Henrik Zetterberg, who is a excellent expert on Alzheimer’s biomarkers, and he did a study with professional hockey players in Sweden, looking at their levels of tau protein in their cerebral spinal fluid. So, people would get a lumbar puncture, or what’s known as a spinal tap. They would pull the fluid out, and they would look to see what the tau levels were, and they were way up right after a concussion. And, so he published his interim results, he hadn’t finished the study yet, and the hockey league didn’t like what they saw. They pulled this funding, and they barred him from continuing with the research. But, that’s the thing that separates CTE from Alzheimer’s disease. A CTE is really driven by the tau, and really only by the tau. Alzheimer’s is a combination of amyloid and tau together. So it’s really a different entity. It, in and of itself, is a different cause of the of the dementia. And that’s why you also see it, sometimes you’ll see it, at a younger age with people who’ve had a history of head injury and traumatic brain injury.
HR:
How did you get into, evolve into LuMind?
JH
Well, like I said, I worked at the Alzheimer’s Association on the science team there, and LuMind just went through a change. Our CEO, is Hampus Hillerstrom, who came from a pharma background, as as did I. He really wanted to change the culture at LuMind and get it to be more collaborative with respect to getting companies interested in forwarding the research, and so, he went out and recruited me. I never really knew much about Down syndrome. To be honest, I just knew a lot about Alzheimer’s disease. But I have to tell you, Hackie, it’s been a great experience. I’ve been so enriched and so fortunate to work in this field. I mean, before COVID, when I still got to go to in person meetings, I’d say the biggest difference between going to an Alzheimer’s conference with families and patients versus going to a Down syndrome conference with families and people with Down syndrome is the hugs. You get so many hugs from people with Down syndrome. They’re just such a loving, lovely people. Some people, they communicate, they have some communication challenges, but they want to show their gratitude so they just give me a hug. I just thought to myself over and over again, if the rest of the world was like people with Down syndrome, we’d live in a much better world. I have been very much enriched by this experience, and I’m really grateful for the opportunity to work at LuMind and work with people with Down’s
HR:
Beautifully said, beautifully said. What is the biggest thing that people like me don’t know about Down syndrome?
JH:
Well, whenever I say we’re talking about the link between Down syndrome, and Alzheimer’s disease, people are shocked. People just don’t know. The other one, I think that you mentioned at the top too, is that many people are surprised at the life expectancy and how that’s changed. If you think about it, you know, I’m a scientist, I think about this generation of people who are 40, or 40 years of age or older, with Down syndrome. This is basically a new generation of people that have never previously lived on the earth. Maybe one or two snuck through, survived for one reason or another, but, generally, people were dead, the dacite, or, by the time they were 30. Just in the last couple of decades, we’ve been able to, through better understanding of medical issues and medical needs, we’ve been able to increase the life expectancy to over 60 years, around 60 years of age, and maybe higher. So, just from a purely curiosity perspective of the scientist, once you think you want to understand those people and figure out what’s going on with them, you know, this problem with Alzheimer’s disease and Down syndrome is a new one because people didn’t live long enough for it, for them to get it. So it’s a terrible problem, but it’s also, in a way, a good problem to have.
HR:
What can Different Brains, based on your limited knowledge of our organization, do to be of help to you and LuMind and your missions?
JH:
Well, I think that the main thing is that you need to talk about the importance of research. And, people too often will say, “Why don’t they cure Alzheimer’s disease? Why can’t they cure cancer? Why can’t they?” It’s always they. Well, I got news for you, it’s us, right? Because there’s a role for the researcher, and there’s a role for the doctor. But, if you’re going to do a clinical trial, you can have funding, you can have a great idea, you can have a drug candidate, you can have everything you want, but, if people don’t volunteer to be in that trial, and to do and to contribute, nothing happens. So, one of the challenges that we have, particularly in the area of Alzheimer’s disease and Down syndrome, is finding adults who are older, 50, 60 years of age, who were willing and able to participate in a clinical trial. And, one of the challenges that we have is that it goes back to this thing that we’re talking about with the life expectancy. So much of the infrastructure for Down syndrome is focused on pediatrics, and only recently have we needed the adult summit and talked about the NDSS Adult Summit. There’s only a few adult clinics that are specialized to treat people with Down syndrome. It’s estimated that only about 5% of the US population of adults with Down syndrome have access to a specialty clinic. That means almost everybody else is going to their primary care physician. Their physician might be a good physician but doesn’t really understand the needs of a person with Down syndrome. We also can’t find them. We have a hard time finding them, and we can’t. You can try to use social media or something like that, but if you’re a person in your 40s or 50s, your parents are in their 60s or 70s, and they’re probably not on Twitter or even Facebook. So we need to figure out ways, or strategies, to reach them and, then, encourage them to participate in clinical trials.
HR:
It’s been so great talking to you. How can people learn more about you and your work and your mission?
JH:
So, our our website is LuMind IDSC dot org. We also have quite a few resources. We also have a bunch of Facebook groups. So you can look up on Facebook, look up LuMind, and you can see there how I spell our name. And so that way we know you can find different groups that might be the right one for you. I spend most of my time on our research Facebook group, not surprisingly, where people share questions or learn from each other. We also have a new offering for families called my DSC, my Down syndrome community, where you can sign up on our website. It has lots of resources and provides information on medical care. So, specialty medical care, as I said, is a problem, and we don’t have a lot of access to, particularly for adults. So you can find information about accessing medical care, and you can ask questions of expert physicians on the LuMind IDSC app. We also if you’re interested in participating in research, there’s research opportunities that you can do from home. I mentioned the Math Habit Study we just completed, which was something that people did at home. We have a program for people who are concerned about Alzheimer’s disease called My Goal Now. This is for caregivers, and it’d be something that they could download on their computer, home computer, or their smartphone just to track symptoms that they’re concerned about, as people might be progressing. Their loved one might be progressing toward Alzheimer’s disease. And we also do surveys from time to time. We have one open right now. We have a caregiver survey that people may be interested in participating in. It’s done with a professor at Boston University as well. So, we’re trying to provide as much as we can, and we have. We also have resources where people can look up ongoing clinical trials. We’re running a natural history study right now called the Life DSR Study of Adults with Down syndrome age 25 and older, who are at risk for Alzheimer’s disease, and trying to learn what we can about them. So those are some of the things that we’re doing, but you can learn more on our website for sure.
HR:
Tremendous, tremendous work, and you want to tell our audience just a little bit about your partner in crime there, your CEO
JH:
Hampus Hillerstrom, he’s a great guy. Not only is he our president and CEO, and we’re trying to measure this, I just mentioned this his vision of how to help support people with Down syndrome, but he is also the father of a seven year old named Oscar who has Down syndrome, as well, and he’s a delightful, delightful kid. He keeps Hampus busy and inspires Hampus. I’d also say we have a board that is made up mostly of parents with the kids with Down syndrome, who really keep us focused on what is important.
HR:
That’s great. Well, tell hampus I want to meet Oscar.
JH
He’s funny. He’s a good kid. He’s a lot of energy, though. Like most seven year old boys, I would say.
HR:
Well, Dr. Jim Hendricks, PhD, LuMind IDSC. Thank you so much for all you doing for so many for all of us with different brains, and I can’t tell you how much I appreciate you being on our show today. Thank you so much.
JH
Oh, this is great. I could go on and on talking about some of these topics. You hit me where I live on a few topics today.
