Diabetics Doing Diabetes Research Connection with David Winkler

[00:00:07] Rob Howe: Welcome to the Diabetics Doing Things podcast. We've been telling the amazing stories of type 1 diabetics all across the world since 2015, and we have over a thousand years of living with T1D on the podcast. The interviews range from incredible feats to everyday victories, and we celebrate them all just the same. Thanks for listening, and if you want to get involved even further, just send me an email at rob at diabeticsdoingthings.com. Hello and welcome back to another episode of Diabetics Doing Things. We are telling the amazing stories of type 1 diabetics from all across the world. My very special guest today is David Winkler. We're calling from Del Mar, California. David, welcome to the show.

[00:01:03] David Winkler: Thank you. Great to be here.

[00:01:05] Rob Howe: And David, I'm going to do my best here because the list of your accomplishments is long. Your impact on the type 1 community is storied, to say the least. So you are the co-founder and board chair of Diabetes Research Connection, which we're going to talk a lot about today. You're also the co-founder and board chair of the Pediatric Diabetes Research Center in San Diego. And we're going to talk about kind of how those things are interrelated in this interview. Most relevant to our conversation today is that you were diagnosed with type 1 diabetes 58 years ago at age 6. So, you know, been living, I believe you will be either the longest or the second longest life with type 1 on this podcast. I've got another gentleman who is either 57 or 59 years with T1D. So you're leading the pack in more ways than one. Welcome to the show.

[00:01:57] David Winkler: Thank you. It's good to be here and good to be alive because when I was diagnosed, they said I'd never make it this far. So I give a lot of hope to people who have the disease that they can lead a long, healthy life.

[00:02:11] Rob Howe: And I think that's something that's especially relevant to me, you know, 13 years in. Um, especially with the amount of research and the amount of technology available to me today since diagnosis compared to, you know, when you were 13 years in the amount of technology that was available, uh, you're living a great life and have lived a full life to this point. And, you know, without all of those advantages. So I am just super encouraged for anybody, for myself and for anybody living with T1D today that, um, you know, the outlook is, is strong, at least in my opinion.

[00:02:46] David Winkler: Well, when I was diagnosed, as you mentioned, at age six, my parents were told I probably wouldn't live past 30. And the fact of the matter is I was diagnosed along with another student in my elementary school. And unfortunately, he lived to be 27, but he died of hypoglycemia, which is clearly still an issue, not as big an issue as it used to be with CGMs. But the fact that 1 in 17 type 1s still dies of hypoglycemia is enough to keep, I hope, all of us motivated to want to find a cure for this disease because notwithstanding some folks' longevity, for those of us that have experienced hypoglycemia and ended up in the hospital or in worse situations, car accidents or whatever, we've got to stay on top of it. So I'm just amazed that I got through what I affectionately refer to as the Stone Age because when I was six in 1960, I literally had to sharpen my needles, boil my syringes, and inject insulin once a day, NPH derived from either pigs or cows and would have allergic reactions to those insulins. And needless to say, one injection a day doesn't cut it. And those were the days when nobody was counting carbs. And my blood sugars, as evidenced by my urine tests, were kind of all over the place. So the good news is we've made huge strides. The bad news is, as I mentioned, there's still side effects from this disease, and it's incumbent on all of us to do all we can to try to normalize blood glucose levels. So I've seen a great evolution in diabetes care, but I would still hope that we can finally put an end to this at some point, which is why I'm interested in diabetes research.

[00:05:00] Rob Howe: Yeah. And I think ultimately, if we're all being honest, that we would say that's what we're most hopeful for is, you know, eliminating the disease. That number that you just said earlier, one in 17 type 1s die of hypoglycemia was pretty staggering to me. I didn't realize it was that common. I do know that as many type 1 diabetics' greatest fear is going low in the night, maybe not being able to feel it and having a hypoglycemic episode. but that number still stood out. Even with today's technology, that number is extremely high and unfortunate.

[00:05:40] David Winkler: Yeah, it is, and I would encourage any type 1 diabetic to get a continuous glucose meter because with the alarm settings, there is no reason to die from hypoglycemia. There might have been in the old days, but today there is no reason. If you have a CGM, and I realize that affordability is a significant issue, but as many have said, that device is, in my opinion and many others' opinion, more important than an insulin pump. But ultimately, and now we're finally at the day where we're starting to develop closed-loop systems, and there are many companies that are planning to come out with those. And that should be a nice interim solution before we have what I think is either going to be a biologic solution or possibly a biochemical solution.

[00:06:38] Rob Howe: And I definitely want to dive into what those options and solutions may look like. But before we do that, before we dive into where we find ourselves today and what you're doing and the things you're up to in the present day, take me back through sometimes growing up with and living with type 1 in the 60s and 70s when there was limited technology. You mentioned checking your blood sugar on a urine stick, boiling your needles. I imagine there were decisions you had to make in that time Whether or not to chase opportunities Or to do things that you wanted to do Or maybe try to be more pragmatic about some things Or opportunities you had to turn down How did you manage those? How did you manage your life with Type 1 back then? And tell us about some of those stories

[00:07:36] David Winkler: Well, one of the biggest issues for me when I got the news that I might not live past 30 was whether or not I should make the effort in school and try to be a productive member of society or just kind of throw in the towel and go for the ride till I was 30 and have a good time and be done with it. Fortunately, I had a brother-in-law who was an endocrinologist, and he was convinced even back then that if I could normalize my blood sugars as much as possible, in other words, to be like a non-diabetic, that there was, in his opinion, a high probability I would live a lot longer. And fortunately, it turns out he was right. I mean, this was before the DCCT trials, but showed clearly reduction in complications and increased longevity. And in fact, some recent studies have shown that a type 1 diabetic can live as long as a normal person, assuming they take good care of themselves. So I have always been a proponent of that. And while I was discouraged in my youth, I knew it was important to exercise and to be careful about what I was eating, as well as drinking once I got off to college. And there were times as I was on my way to go to law school and in law school when I still wondered how long I'd be living. But I just said, you know, I'm going to plan on living a long life, and I'm going to do everything I can to reduce complications and extend longevity. And I guess it's paid off, as evidenced by the fact that I'm 64 now. So I encourage everyone out there to take really good care of themselves and live with the disease. And if there are people along the way that you're worried about not accepting you, whether it's a mate or a girlfriend or a boyfriend, I just wouldn't worry about it. You don't want to have anything to do with somebody who doesn't accept you with your disease. and, in fact, a prospective mate who does accept what you have as a type 1 diabetic, I think is the kind of person you want to be with. I know many loving spouses of type 1s, often called type 3s, who are right there for you. And I know of type 1s that have married each other, and a couple that I know of as of last week are getting married. So there's no reason to let this disease get rid of your life other than having to tend to it, and it's like any other disease. But as far as my history goes, I decided I wanted to do research in type 1 diabetes and studied biology in college, spent a fair amount of time in laboratories, and ultimately concluded that that environment was not where I wanted to be. I was just too interested in more social activities and getting more government funding. I ended up going to law school with the idea of potentially trying to change laws with respect to folks with type 1. and ultimately, mostly as a volunteer, I was kind of going broke and had clients who were doing real estate, and I made the decision to go into real estate law and then real estate investing just to make money so that I could then use that money to buy more research and to help support scientists who are off their efforts. And so that's why I've supported organizations like ADA, JDRF, and then University of California, San Diego, to establish the Pediatric Diabetes Research Center, and now most currently the Diabetes Research Connection. So I think it's incumbent on all of us who want to see an end to this disease to try to help those scientists because we're losing some of them to other fields given that there have been NIH cutbacks. There obviously hasn't been much increase for inflation. And even JDRF has cut back on funding. So we've got to look to some of these alternative forms of contributions to help support the scientists so they stick with T1D.

[00:12:43] Rob Howe: Well, and I think I want to talk a little bit about that just in general. And if my own ignorance has made a connection that isn't there, please let me know. But I had a similar conversation a while ago talking about endocrinology, where there's almost, unless you are a type 1 or have type 1 in your family or some connection to an endocrine-related disease, there's almost no benefit to becoming an endocrinologist because there are less opportunities for funding and less money and i might be paraphrasing here but that's my at least that was my takeaway from the conversation is it and it's and it sounds like you're saying it's similar

[00:13:27] David Winkler: from the research side yeah i mean there's certainly plenty of uh diabetes to go around particularly type 2, that keep a lot of endocrinologists busy. But whether the compensation is adequate or not, I don't know. A specialist, in my opinion, should be compensated more because they've had additional training in the specialty. And the evolution of the science has been significant. Again, there's something like 30 or so drugs out there that are available for type 2s, not quite as many for type 1s, but just knowing how all those drugs work and the interactions and what's better suited for one individual versus another, I mean, it's critical information, and then seeing how the patient responds to those various medications is also important. And so, you know, our whole health care system is being impacted from a variety of directions, and I'm just hopeful that type 1s as well as type 2s can get the information that they need from physicians and others to take optimal care of themselves. Because I've seen horrible care of diabetics and the end results. It's not great. I've seen the amputations. I've seen the heart disease. I know of the kidney transplants. You just don't want to go there. It's just critical for people to exercise, eat right, and get the right medications.

[00:15:20] Rob Howe: Yeah, and I think that was something you said earlier that struck me. You were saying at age 64, you're glad that you can live an entire life as long as a regular person with type 1. but you said, you know, a couple of things, obviously like diet and exercise, um, and, you know, taking and maintaining good control of your diabetes. What are the, what are the big takeaways for, you know, for you when you look at a person's life with type 1, avoid looking to avoid those, you know, necessary, those horrifying, you know, uh, complications that come from lack of control and those things that, uh, you know, they sort of list, doctors list as maybe scare tactics sometimes early on. What are the most important steps for patients to take, you know, in your experience to make sure that they can live that

[00:16:15] David Winkler: long life? Well, I think you have to be your own laboratory. And that's why a continuous glucose meter is important because you can see the direct impact of various foods. You can see the impact the exercise, and to some degree the medications. And I'm talking about medications that are not related to diabetes. For example, the flu season is pretty bad this year. You've got to be careful about the kind of cough syrup you use and the kind of cough drops that you use because you're really running a continuous experiment on your own body to try to optimize glucose levels and keep them within normal range. So paying close attention to what's going on with your blood sugars at all times, I think, is critical. And being as knowledgeable as one can about the disease. There are many websites that provide advice. I think it's critical to go to the ones that are credible because there's a lot of misinformation on the web that people just can't pay attention to. I mean, all kinds of people claiming they've got cures that are not cures. so it's very important to make sure the information you get is credible and just a plug for our latest charity we do have news updates on it and whatever we put on that website is reviewed by several scientists before it goes up to make sure it's credible we just will not put junk up there and I'm sure that JDRF has good quality news as generally does ADA and Medscape and some other credible websites. WebMD is decent. And then, of course, all the major periodicals like Nature and Cell Biology, those you can pretty much rely on, but just watch out for the source. But I encourage people to be as educated as possible about all the various inputs. I think the tape got cut off earlier when I was talking about all of the ways in which your blood sugar can be impacted, and it's important to acknowledge those, ranging from stressful situations. When those endorphins start pouring on, they'll raise your blood sugar. If you have a larger bolus of insulin versus a smaller one, it seems like the absorption rate is not proportional because of the surface area and the rate of absorption. Also, I have found that when I'm sleeping, if I get up in the middle of the night and I have higher blood sugar and I inject insulin, it doesn't lower my blood sugar as quickly as during the daytime because there's not as much movement of interstitial fluid and circulation generally. So there's things like altitude that raise blood sugar and make it somewhat unpredictable. So those things are on top of the diet and exercise and quantities of insulin that a type 1 is taking. In my opinion, it's important to be on top of all these variables, and especially the glycemic index of food because you can see your blood sugar go up from fats and proteins. If you load up with enough of it, it will show up later. One of the things that our charity did as a fundraiser was to have an event where we served beer and wine and talked about the impact of beer and wine on the blood sugar and how alcohol in drinks shuts down the liver and then later on the liver releases the extra glucose. So you've got to watch alcohol percentage levels as well as carbohydrate levels in alcoholic drinks. So there's just so much to know about all this, and I don't mean to confuse people, But the more you know, the more you can understand why your blood sugar just took off or why it just went down. Because sometimes it doesn't seem like there's any rhyme or reason to it. And it's important to know how all these variables affect you.

[00:21:08] Rob Howe: Well, and you mentioned earlier just the idea that it's always an experiment. that just when you think you have it figured out, you're still going to have to keep that sort of scientific experimental mind. And that has been, for me at least, much more in focus the last week or so because I'm, for, I guess, for 30 days, I'm going off of my pump and my Novolog insulin, or Humalog insulin rather, fast-acting prescription, and I'm going completely over the counter. So I'm using NPH and R and injections. And I've never I never took NPH or R early on because I always had prescription insurance. So I've had to kind of learn, relearn, you know, what my life was like when it was a little bit more regimented. And I have had the same time a day that I gave doses. And I'm doing it to show that, you know, there are options for people without insurance to live with type 1 well at a low cost. and I've been pretty, I'm pretty encouraged by the results so far that, you know, I haven't had to change much of anything about my life, just be a little bit more disciplined and can live pretty well, which I think is encouraging, but also that, you know, scientific sort of experimental mindset, just when you think you have this thing figured out, it could throw you a loop, you know, just like those, like you were talking about beer and wine and alcohol's effect on the blood sugar. There's high protein and slow carb and Whole30 and bulletproof diets that are very ketogenic that are very popular right now and call for a lot of fat intake, but you're still going to have to give some insulin for that because of the way that your body processes it. So sort of not all carbs are created equal type conversation, which can be frustrating for people living with type 1, right? Just when you think you've got it figured out, another curveball

[00:23:09] David Winkler: shows up? Well, the thing that's remarkable to me is that you can do the exact same thing two days in a row and get different results. It's the reverse of the definition of insanity, you know, where you do the same thing and expect a different result. Well, with diabetes, that's what happens. There's just too many things going on. The moving parts are such that you have to somehow attempt to figure out how they all juxtapose and what the end result's going to be. So I can only encourage people to try to get on top of many of the variables as there are out there, but even to become aware of ones that you hadn't considered before.

[00:23:57] Rob Howe: Well, and how challenging is that from a research perspective to say, hey, you know, we're going to focus on this one piece, but, you know, there's so many other variables involved. How do you guys overcome those challenges?

[00:24:12] David Winkler: Well, like with most experiments, you want to try to limit the number of variables so that you can attribute a causal effect to only one or two things. Now, the reality is that's very difficult because, you know, how do you control your stress level? How do you control whether something wakes you up in the middle of the night and disrupts your sleep cycle, which will impact your blood sugars? There's just so many things that go on. The amount of sleep that you get affects blood sugar levels. So it's challenging, and that's why I'm hopeful that we'll first see a mechanical solution because a closed loop will adjust for blood sugars that are moving around by either turning on insulin or turning it off. And that will help. I mean, we need even faster-acting insulins or another way to put the insulin into our body because we weren't designed to receive insulin sub-Q. So there's always a delay in the receipt of that insulin. And you'll find with regular it's even longer than Humalog or Novolog. You've got to take that meal injection even earlier. And as far as NPH goes, watch out for those afternoon peaks because it's got about an eight-hour peak. And if you inject in the morning, you're invariably going to have a peak in the afternoon. And I'm not a doctor, and I would suggest you speak with an endocrinologist, but I would think you'd want to do multiple injections of the NPH to try to balance it out and watch out for early morning hypoglycemia as well if you take insulin at night. So it's going to be a little more challenging. And Lantus and Levemir were a significant advance because of how much they flattened out the release curve. But a pump does it, obviously, even more perfectly. and to the extent you need, say, a basal bolus in the morning when all of the hormones that wake you up are turning on. All those hormones raise one's blood sugar. I've had absolutely nothing to eat in the morning and I've sometimes seen my blood sugar go up 100 milligrams per deciliter just for waking up. It's enough to drive you crazy sometimes. but um oh i'm telling you go ahead it's it's funny like that that actually happened to me

[00:26:52] Rob Howe: this morning just that dawn phenomenon hormones waking up having a cup of coffee and all of a sudden you're like you said a hundred milligrams per deciliter higher than you were 15 minutes ago and you know it's just okay it's like it's going to be that type of day i guess huh all Right. And then, you know, like you said, one action does not necessarily cause an opposite reaction. So you're just, you know, what can I learn from this variable? Well, not too much. Just got to move on to the next one.

[00:27:24] David Winkler: Yeah. And again, that's why I'm optimistic about the closed loop. Granted, there is a significant cost associated with it, but hopefully people have good health insurance and can get it covered. But as you probably know, Medtronic's got its closed loop, and there's, I believe, at least four other companies that are getting closed. So some of them should be out in the next two years, and I could see a lot of use for that. And as I said earlier, hopefully we'll see a biologic or a biochemical solution.

[00:28:04] Rob Howe: well and and you mentioned and i'm looking here uh two days after i started my over-the-counter challenge uh i got my medtronic 670g hybrid closed loop in the mail so it's like sitting here unboxed uh but i can't use it and it's about the most like uh frustrating timing that the universe has ever thrown me um so i'm gonna go from the stone age to uh to the future here in about three weeks, which I'm really excited about. Um, you mentioned earlier being hopeful as well for a chemical or, uh, or a biomechanical, uh, solution as well. Can you talk a little bit about some of the research that's going on in those fronts and, uh, you know, what, what can we expect to see

[00:28:51] David Winkler: maybe here in the next 10 years? Yeah, well, the, the mechanical one is, is pretty much available a la the Medtronic pump you just mentioned. That does have a closed loop. It's approved by the FDA. It's a big deal. There's several partnerships that Dexcom has with many meter companies. I know that they're submitting right now to the FDA for a low shutoff, which is probably the most critical part of a pump's functioning, is to stop the insulin when someone's going hypo. So there will be a lot more doing that. I think there will be fully closed-loop systems with insulin only. Ed Damiano, who I'm sure you've heard of at Boston University, has got a dual hormone pump which uses, in addition, insulin glucagon to raise blood sugars. And that model should be online hopefully the next three to four years. I know some people don't favor the use of glucagon, but I think in a desperate low situation, it's nice to have that hormone to bring the blood sugar back up fairly quickly. So those are kind of the mechanical fixes, the combination of CGM and pump. The biologic solutions are more complicated, generally involves stem cells, usually in packets, like what ViaCyte has been attempting here in San Diego. Unfortunately, they recently announced that their packets were not getting adequate neovascularization, meaning that the new blood vessels to bring oxygen and fresh blood supply food to the cells, and then the venules or the veins to take away the waste products. It's just not functioning. And they announced that they're going to have to puncture the membrane and use immunosuppression drugs, which is a real step backwards, unfortunately, because it is more like the islet transplants that started, I believe it was around the year 2000 with Shapiro up in Canada. That proved to work for a period of time. There are some people that have had long-term success, but they've had to be on immunosuppression drugs. And as I'm sure you know, those have their own host of problems.

[00:32:01] Rob Howe: Well, and I think I do want to talk about that briefly Because like you said, there have been successful implementations of multiple different, at least from what I understand, multiple different islet cell replacement surgeries or pancreatic transplant surgeries. and so you know i i think the the tendency is for someone with type 1 to do like a very little amount of research and see one of those or maybe somebody tags them in an article on social media or sends it to them via email or they see something where we have some like cure related verbiage or rhetoric and then you don't hear anything else about the follow-up or you don't hear anything else about it for a long time what are what do we need to know you know at least from a global perspective, you know, the 10,000 foot view of these types of operations? What, what should, you know, your average type 1 person take away from these?

[00:33:07] David Winkler: Well, I would never have a procedure done like that without being fully aware of all the consequences and positive and negative. There's a lot of concern about these immunosuppression drugs that they can bring on other diseases. And at least for me personally, and I would leave it to anyone to make their own decision, I would not want to use immunosuppression drugs because I feel like I can regulate my diabetes well enough that I don't want to have to deal with the consequences of immunosuppression. And so to get back to your earlier question about what's on the horizon, and there are a number of other companies and universities working on a better membrane than what ViaCyte was using to encapsulate these beta cells so that you don't have to take the immunosuppression drugs because there's a problem with not just autoimmunity, which all type 1 diabetics have, but alloimmunity, which is the immunity to any foreign cells. and the islet or beta cells that are transplanted are from another individual. So the body rejects those outright absent these immunosuppression drugs. But if you take immunosuppression, you're more likely to get sick earlier. There's been some evidence of increased cancer. So the bottom line is I would want someone to thoroughly research it before doing it. Sometimes if you have a kidney that's gone bad or you have no kidneys, they do what are called PACs, which are pancreas and kidney. They take both organs from a donor, presumably a brain-dead donor, and transplant the whole thing. And if you've got that kind of situation where the kidneys are failing or have failed, then it makes sense because then you'd have to be on dialysis and deal with regulating the diabetes. If you could do it all at once, you know, it's just always a question of which devil do you want. So I think it's critical to be informed, again, from credible sources. but to get back to the question of what else is on the horizon there was some exciting research out of MIT involving a new company called Smart Cells they were embedding insulin in a gelatinous material that was glucose responsive So this polymer could sense glucose levels, apparently could be adjusted to different levels, and say when blood sugar hit 180 or 200, the material would release the insulin into the bloodstream and bring the blood glucose level down and then stop releasing. So my understanding is in its initial formulation, it would require a once-daily injection. Now, I've always wondered about what happens if this material starts piling up and you have a high blood sugar and all of a sudden a ton of insulin comes on. That could be problematic. Anyway, all I know is that Merck bought the company, and I don't know what they're doing with it now. But there are other folks exploring that option. There are other potential solutions that involve, and this is where the research starts getting out on the outer edge, and that's where Diabetes Research Connection, which I can talk about later, is playing. We are involved with extremely innovative scientists, usually early career. They have not yet been channeled to kind of go with traditional thinking. One of our scientists we gave a $50,000 grant to. He couldn't get grant approval from anywhere else. He figured out a way to get muscle cells to be glucose responsive and make insulin. and based on his preliminary data that he developed using our money, he then applied to the Keck Foundation and it was recently announced that they gave him a million dollars to pursue this science, which would be really cool if your and my muscle cells could be glucose responsive and start making insulin. So there's work being done like that. We're funding work over at the Venter Institute where Craig Venter sequenced the first human genome, namely his own, many years ago. He was the first to do it. over there John Glass who's actually a type 1 diabetic and a researcher is working on different projects to find a bacterium that will be glucose responsive, make insulin and be put into an immune privileged subcutaneous site and they're getting some decent preliminary results So if we can avoid the problem of the auto and allo immunity and have other cells in our body make insulin in response to glucose, I mean, that would be unbelievable. So that's some of the work that we're supporting right now.

[00:39:16] Rob Howe: What's it like to, on a day-to-day basis, to encounter those types of discoveries and the people who are pushing that type of research? And you mentioned that the money that you guys initially supplied provided the research that provided another round of funding to get these things to become more of a reality. what what is that like for you you know not only from a you know career perspective and understanding what you guys do makes and has an impact but also you know getting to do something that gives back to a community that you're a part of um just what what does that what's that feel like what is that uh you know personal satisfaction or is that you know when at the end of the day you close up shop and you know that yeah you know what you've done is making a difference you know for

[00:40:10] David Winkler: people, you know, long term? Well, to me, it's the most rewarding thing in my life, at least, I mean, other than my family. It's, it's, it is a way to try to advance science to support these brilliant researchers who have these out of the box ideas. And when you see progress being made, It's absolutely wonderful. I mean, the reality is that a lot of research fails, but what's important is that it doesn't fail in the sense that it adds to the body of knowledge, and we require all results to be published, which I think is critical because it avoids redundancy. In other words, other scientists aren't repeating the same work, or it gives new insight as to a better pathway to follow, but don't do what didn't work. Maybe tweak it a little bit. So to me, what's important here is that we're building on a foundation of tremendous knowledge but not enough to get us over the finish line. So we've got to keep adding so we can get to the point where we have a biologic cure because I think ultimately that's what everyone wants. is to have a simple operation and not think about being diabetic ever again. If we can get to that point, that will be the greatest day in history for type 1 diabetics. There's also work being done to try to cut out using CRISPR technology the genes that cause type 1 diabetes. So pre-implantation of the embryo, it would be in vitro fertilization. But you'd cut the gene out, and it wouldn't be passed on. So prevention may ultimately be as important or more important than a cure. And I know it sounds like playing God, but I can deal with it. If my offspring and grandkids don't have diabetes, I'll be a much happier grandfather. So at this point, I don't know whether they'll get it or not. But to respond further to your question, what I think is critical is giving back. I certainly didn't go into real estate because it was meaningful. I went into it to make money so that I could do some things that are meaningful. And I've always, as I mentioned earlier, had this interest in trying to further diabetes research because we all know what it's like to live with. I mean, clearly there are diseases that are worse, but, you know, some say if you had to have a disease, this is the one. But I think those of us that share this disease would rather not have it. So we'll keep working away at it.

[00:43:19] Rob Howe: Right. It's kind of one of those things where, you know, if you lined up every possible chronic illness that you could have, you know, managing diabetes is for sure not the worst one on the list. But at the same time, if you didn't have it, you know, you'd be much, much more fulfilled and much happier. Yep. I think, you know, it's an interesting, interesting topic. And your perspective is super, super valuable. I think something that comes to mind to me, at least on the lifestyle side of things, and I hope in some way that the lifestyle side of living with type 1, that I think we're in this period that I call the T1D renaissance, where all of a sudden there are all these people online that you can connect with and follow that are living their life forward and sort of beyond and above and beyond their disease. that you have access to and access to their daily life because of social media. And I think that's a good thing that has come out of that. And I'd love for that to extend or that sort of momentum to carry its way over into the research side where it causes people to learn more about day-to-day treatment, to learn more about the research that's going in and that needs to be supported and funded and awareness being built around. because I think there are a lot of positive stories, but at the same time, we can't just rely on everybody to do their own individual research and find those things. We just need a better way to share those and all these passionate people online, find a way to sort of integrate them into that process and sort of create advocates. Because like you said, giving back is the most important thing that we all can do. And there are ways for us to support. We've just got to make sure that we back up our words with action.

[00:45:11] David Winkler: Well, and I strongly encourage people to go to our website, which is diabetesresearchconnection.org. That website has all of our projects that we've funded as well as the ones that are seeking funding now. And our process is to take some very complicated science and, once approved by our over 80-member scientific review committee, to have it go to our lay review committee and then put it in very user-friendly, understandable language. So you don't have to be an expert in biological research or even diabetes. and the explanations are provided to hopefully get a prospective donor to understand what's going on and then contribute. Some of the work we also do is in the clinic. I've had horrible experiences in hospitals. The last time I was in for a serious operation, in the emergency room asked me if my continuous glucose meter was a pump. And I said, how do you suppose the insulin gets in me from the continuous glucose meter? And then I go to surgery. I go back to my room. No Lantus was given to me. By the time I woke up at midnight, my blood sugar was 350. I said, I need insulin. Immediately, they said, well, we don't have an order for that, and you didn't eat dinner, so you didn't need your Lantus. And I'm just, you know, my head was about to explode because the care was just so bad. And I subsequently learned at this hospital that they killed somebody in the operating room with a 10X dose of insulin. Somebody just moved the decimal point over by one instead of five units. They got 50. They killed the guy. Another gentleman gave himself insulin before he went into surgery. He didn't tell anybody. His blood sugar was high. And he came out brain dead. And I said to them, why can't you put a continuous glucose meter on people in the hospital, especially in the operating room, but also in the patient's room, and have that information sent wirelessly to the nurse's station? And they said, well, we could, but we have to get approval from the Joint Commission on Hospital Administration. I said, so what do we do to make that happen? They said, well, we have to run a clinical trial. Well, if you go to our website, you will see that we're funding a clinical trial right now to use continuous glucose meters in the hospital. And the name of the project is Blood Glucose as a Vital Sign. Because let's face it, for a type 1 diabetic, blood glucose is just about as important as saturated oxygen or blood pressure or anything else. I mean, if we start going through the floor, as evidenced by the death of the individual and the brain death of the other one, it's critical that we know what the blood sugars are doing. And so we're supporting that kind of work. We're also supporting one of the new projects we just put up is to provide credible education for type 1 diabetics online. Penn State University is doing this. There's an MD whose husband and daughter have type 1 diabetes. Her last name is Osir. She's highly motivated to get this thing to work. And so we're trying to put together the seed funding for her to be able to provide this course that will be online. So until we have a cure, we need to deal with care as best we can. And so we're supporting that as well. So basically where there's a need and the seed funding that we provide can get something off the ground, or in the case of this series of talks that will be online and there will also be a manual created, the $50,000 will do it. It will fund the whole thing. So we are just looking for great research. We get more applications than we can possibly fulfill. and so we select the best ones we can find. I think we've had something like 70 applications and have funded 12 so far, have four more online and another one coming soon. So I, again, encourage people to go to diabetesresearchconnection.org and I hope you can put it on your website. And also we have some really exciting news. We had a wonderful meeting with the folks at Beyond Type 1 last week. I'm guessing you know them. They have over a million, two followers, and they want to work with us on the cure side because they are all about education, advocacy, and cure. And so we're going to help them not only in terms of where they put their own money, but to also publicize the work we're doing. And very importantly, both Beyond Type 1 and Diabetes Research Connection cause 100% of the donations, in our case, to go to the research, in their case, to go to the education and advocacy. And now that will be a complement to them, it's all very wise, positive expenditure of money. So we hope people will consider that. It feels good.

[00:51:11] Rob Howe: Yeah, yeah. And I mean, I think adding that component to the beyond type 1 piece is super important. And I think, you know, the the advocacy, I can't say enough about the great job that they do on the advocacy and the lifestyle and the community aspect. They've they really have changed the way people respond to being diagnosed with type 1 here in a very short amount of time. Uh, and, you know, for you guys, what a huge, uh, a huge compliment for you guys to be a part of that now as well. Uh, and the work that you guys are doing, um, I'm absolutely going to include a, and you know, all the relevant links and, uh, you know, make sure that we, you know, are creating as much awareness within the community about what you guys are doing as well. Because, you know, if we don't do, you know, what good is all the work on the advocacy side if we can't follow that up on the clinical side? um right you know the just hearing you talk about you know the resistance of a continuous glucose monitor as a as a a key component to a surgical operation for someone with type 1 diabetes is is ridiculous like of course it's it's essential to uh why why aren't we doing it i think part of it um i've talked to multiple airline former airline pilots commercial airline pilots who are now type 1 and, you know, they're unable to fly commercial aircraft, but, you know, they're, you know, in the terms of the medical board, you know, with, with a continuous glucose monitor, there's honestly less likelihood of anything going wrong with them than any other airline pilot with risk of heart disease or, uh, or stroke or any other type of, you know, chronic illness that strikes sort of without warning. so you know just the the idea that you know there's technology already out there that can change the way that we many of us live or make our living or you know go under under the the under the knife with you know just better visibility into our you know our vital signs so yeah it's it's staggering you know the stuff that you don't hear about um yeah and that's when

[00:53:24] David Winkler: When I learned that about those deaths, I just couldn't believe it. It was shocking. And clearly something had to be done about it, so we're trying to do that. But most hospitals won't do anything until it's proven to be efficacious. And, you know, there's a cost involved, clearly. But I know that one of those lawsuits was settled for $5 million. So they've got to think about that cost, too, for the negligence involved. So I'm hopeful that we'll change some protocols, again, before we've got a cure. But we need to be working on all fronts, as you said. And I just also want to clarify that we just had our first meeting with Beyond Type 1. They seem very enthusiastic, and so are we, about a partnership. But we're going to be easing into it, see how it goes. But I see nothing but mutual synergy there. I think it'll be great for both organizations.

[00:54:24] Rob Howe: Yeah, I couldn't agree more. I'm excited to see kind of how that pans out. And I love a little bit of insider info right up front. That's pretty awesome.

[00:54:34] David Winkler: Yeah, that's cool.

[00:54:35] Rob Howe: Um, so I do want to talk, uh, quickly as we kind of, uh, wrap up because I think we've gotten a lot of really great information. And I think, um, I might have to have you on another episode, you know, in a few months time to just kind of get an update on all that you guys are doing at, uh, diabetes research connection and, um, sort of just an update on, you know, what's going on in the world of diabetes research, because I think it's really important for us to continue to spread that message. but something that I always ask all my guests is this same question, and I've gotten a variety of different answers over the years now, but the context is really important, so I'll give it to you here. Imagine that you are in an airport, and they are about to close the door to your gate, and for whatever reason, you can't miss the flight. There's either family or a wedding or important meeting or whatever on the other end, and you've got to be on that plane. but you run into somebody who's either recently been diagnosed with type 1 or is struggling with their type 1. So what's the one thing that you leave that person with in the 30 seconds that you have with them? What's the one thing you tell them?

[00:55:49] David Winkler: I would tell them to make sure they've got a great endocrinologist to read as much as they possibly could to get a CGM and to carefully monitor their activities in blood glucose and try to figure out the causation. The most critical thing is to try to normalize blood glucose levels. And then I would tell them to support research. But also, as I said earlier, there's no reason why you can't lead a full, complete life, same as anyone else. I traveled in Asia with a backpack for four and a half months. I've climbed up mountains. I've been in a competitive sailor. I've done all kinds of things. There's no reason. I've been to undergraduate law school. Just do whatever you want to do and don't let the diabetes

[00:56:39] Rob Howe: stop you. There's no reason to. I love it. And in the spirit of supporting research, You know, this is one of the first clinical sort of research discussions that we've had on this podcast. And I hope to do more of that going forward just because I think, you know, the more we all know about what's going on behind the scenes, the better we can support it, the better conversations we can all have. So, David, thanks so much for coming on the show and, you know, really looking forward to following you and Diabetes Research Connection as well much more closely here in the future. And, you know, hope to meet you in person one of these days. I love San Diego, so I got to get out there sooner than later.

[00:57:25] David Winkler: Well, absolutely. Come visit. I'd love to see you and meet you. And thank you for all that you're doing. It's a wonderful website. Great podcast and glad that you're getting out to the T1D community because the more we communicate and be a community, the better off we're going to be. So it's great.

[00:57:45] Rob Howe: Couldn't agree more. So thank you, David, for coming on the show. That's DiabetesResearchConnection.org, guys, if you want to check them out online. And we'll post those to the show notes as well.

[00:57:56] David Winkler: And just a quick note that we are, of course, at 501c3. and you may be able to take a big deduction depending on where you fit in the new tax law. But we are a non-profit. Okay, well thanks so much again for your time.