Diabetes, Kara and the (Not So) Dire Beastie – PediaCast 438
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- Kara & the (Not So) Dire Beastie is an animated series aimed at helping young patients and their families better understand type 1 diabetes. Series creators, Dr Angelina Bernier and Alan Caudel, visit the studio as we explore the development and impact of this important project. We hope you can join us!
- Type 1 Diabetes
- Kara & the (Not So) Dire Beastie
Announcer 1: This is PediaCast.
Announcer 1: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello, everyone, and welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio.
It is Episode 438 for July 30th, 2019. We're calling this one "Kara & the (Not So) Dire Beastie." I want to welcome all of you to the program.
I realize the title is a bit mysterious this week, so let's clear up the meaning right out of the gate. Kara and the (Not So) Dire Beastie is the name of an animated series that aims to educate and entertain kids and families as they learn the ins and outs of Type I diabetes.
It's a classic example of edutainment whereby kids learn about the pancreas and insulin and glucose. It introduces concepts like hyperglycemia, which is high blood sugar, and hypoglycemia -- you guessed it -- low blood sugar, along with the important roles of nutrition and exercise and new technologies in the treatment of Type 1 diabetes. And it accomplishes all of these details while also exploring the story of Kara as she travels to Queen Regent's land and teams up with the RedBlooded Knight in a quest to tame the Beastie.
It's an engaging story and a lot of fun, but also educational with the goal of improving health literacy and outcomes for children with Type 1 diabetes.
Two creators of this series, Dr. Angelina Bernier from the University of Florida and Alan Caudel with the Drawn from Valor Animation Studio, they'll be joining us shortly to talk about Type 1 diabetes and their quest to raise awareness and improve the health of kids with this disease through Kara & the (Not So) Dire Beastie. We'll get to them in just a few moments.
First though, it's summer. School is still out. Kids are outside playing and, hopefully, as moms and dads, you're getting outside as well.
One thing that's really helped me, our health insurance plan that my family has here through Nationwide Children's Hospital, it requires for a couple of months during July and August that we get 6,500 steps a day on average over the course of a couple of months.
And even though, I sort of joke about it a little bit because it is not evidence-based and we're all about evidence-based medicine here at Nationwide Children's. But it is not an evidence-based fact that people who count their steps are healthier than those who don't. There's research out there to refute that that is really in any way beneficial.
However, what it has done is because I still play by the rules and I try to get my steps in. But it's gotten me outside. And so, we've been out a lot in the last few weeks. And we have an elementary school very close to our house in the neighborhood. It's got a fantastic playground which has a ga-ga ball pit, foursquare, hopscotch, all that sort of thing, basketball hoops that are outside.
So it's a fantastic place to go and not only walk there and back, but also get some steps playing. And my son has really been in the ga-ga ball, which I have to tell you, once you hit 50, ga-ga ball hurts for a few days afterwards. But no pain, no gain, right?
We've been playing foursquare and we even made up a game that we call diggity-ball. I'm not even sure how it got that name. But basically, there's a painted circle on the playground and family members kind of equally space themselves around the circle. And you have to bounce the ball to another family member, but on the first try, it's one bounce and then the other person has to catch it.
On the second try, two bounces, third try, three bounces. You get what's going on here. The fourth try, four bounces. And then, if you don't catch it or it goes out of the circle after your number of the bounces that you have been prescribed for that turn, then you're out. And then, you start over, and the person left standing around the circle is the winner.
And I think the most bounces that we got to is probably 10 or 11, but you have to time it just right. It's a lot of fun, but it's one of those games that we just made up at the spur of the moment. Like, hey, there's a circle here. Let's figure out a game that we could use a ball and play around the circle. And then, it became known to our family as the diggity-ball.
I just want to point out, this is sort of a fun thing to make up games. And with kids of all ages, it can be simple rules, more complex rules. And just something that's fun to do and you may want to try with your family.
The other thing that I've noticed as we've been out and about getting our steps is that kids are not wearing helmets in our neighborhood on bicycles, roller blades, skates, scooters, electric scooters. Even seen some kids on little mopeds, motorized bikes. You only have one head, so protect it, please.
I cringe as I see folks flying down on a bike. We have plenty of traffic in our neighborhood. Those helmets are important. And so, this is not just message for the kids, it's a message for the parents as well. Because when all those kids that I see run around the neighborhood at high-rate speed on objects, so not just walking around, they're not wearing helmets.
And that's part of the parent's responsibility to make sure that your kids are wearing helmets, that they have well-fitting ones that's available, that the rule of the house is you need to wear it if you're on a bike or rollerblading or scootering and, certainly, on a motorized vehicles.
So it's up to the parents to make those rules and then to enforce them. We see a lot of serious head injuries and some of those can be quite devastating. So please, helmets, as you're out and about this summer. Very, very important.
We do want to remind you that we're on social media here on PediaCast -- Facebook, Twitter, and LinkedIn, and all of those places. We try to share stories, articles that I think will be helpful for your family and your family's health, the health of your kids. Also parenting issues that may come up.
We try to share some useful information every day, stuff that's not on the podcast because we can't cover everything here. And just to give you some examples of things that we have shared recently -- Parents Who Belittle Children May Be Raising Bullies, Don't Have Lunch Money? A Pennsylvania School District Threatens Foster Care, Buyer beware: Bike helmets that don't meet safety standards are 'widely available' online. The article tells you exactly what you need to look for to make sure that the bike helmet you're providing for your child is a safe one.
Also, Florida becomes the third state that requires schools to teach students about mental health disorders. And Oregon allows excused absences for mental and behavioral health reasons in addition to physical health issues, one of the first states to allow that.
So those are the kinds of things that we share on Facebook, Twitter, and LinkedIn. Please search for PediaCast there and follow us so you can get your daily those of pediatric and parenting information.
We're also on Instagram. Really more pictures on Instagram of what our family's up to. You can always view us in the studio. And maybe, we'll need to get a picture of diggity ball on Instagram so you can get the visual of what we're talking about with that.
So in all of these places, Facebook, LinkedIn and Instagram, just search for PediaCast.
You can also get in touch with me at the website, pediacast.org. There's a contact link if you would like to ask question for the show or suggest a topic that you'd like to have us cover.
Also, I want to remind you, the information presented in every episode of PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. If you have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination.
Let's take a quick break, and then I will be back to talk more about Kara & the (Not So Dire) Beastie. That's coming up right after this.
Dr. Mike Patrick: We are back. Dr. Angelina Bernier is a pediatric endocrinologist at the University of Florida. She has a particular interest in treating kids with and educating families about Type 1 Diabetes.
Alan Caudel is a creative director at Drawn from Valor, a non-profit animation studio which aims to educate and empower children and their families impacted by physical and mental health conditions.
Our two guests collaborated on the development of an animated series designed to help kids and families challenged by Type diabetes. The series is called Kara & the (Not So) Dire Beastie. I'm excited to chat with them as we explore Type diabetes in this novel form of edutainment.
So let's give a warm PediaCast welcome to Dr. Angelina Bernier and Alan Caudel. Thanks so much to both of you for being here today.
Alan Caudel: Thank you.
Dr. Angelina Bernier: Thank you very much for having us. It's a pleasure to be on.
Dr. Mike Patrick: Yeah, really appreciate you taking time. So Dr. Bernier, let's start with you. Remind our audience, what exactly is Type 1 diabetes?
Dr. Angelina Bernier: The Type 1 diabetes, unlike Type 2 diabetes, which is indeed the most the common form of diabetes in the nation and worldwide. But Type 1 diabetes is an autoimmune condition. So I think of this as being a problem with the immune system, which normally is designed to fight infection.
And anything that might be messing with you had actually turned on itself and is confused. It is affecting your body's ability to make insulin and subsequently they develop diabetes, which kind of encompasses a bunch of disorders that all result in high blood sugar.
But Type 1 specifically is an autoimmune condition that causes diabetes. And it's actually the one of the most common disorders in childhood.
Dr. Mike Patrick: So the body's immune system antibodies basically harm the pancreas, the cells in the pancreas that are supposed to make insulin. So, because of that harm that the immune system does, you can't make insulin anymore. That insulin is really required to get blood sugar, glucose, into cells where they're going to use it as an energy source. And if that glucose can't get into the cells, it sorts of builds up in the blood. And that's why you get the elevated blood sugar, right?
Dr. Angelina Bernier: Exactly. And as a result of that, you're peeing sugar, so the children will often show up in their initial symptoms are peeing a lot, drinking a lot, and losing weight. So they're actually peeing out out all their calories.
Dr. Mike Patrick: Yeah. And this is something that then has a lifetime consequences, so it's really important to get this under control and help kids understand the disease and treat it on a daily basis. Otherwise, what sort of complications can occur with elevated blood sugar over prolonged periods of time?
Dr. Angelina Bernier: So the primary complications that most people are aware about are some complications that involve the eyes, vision, kidney functions, so people can sometimes need dialysis for management. And then, nerve damage so that's where people had some injury to their feet and then what's possibly known as needing some amputation because there's poor blood flow because of a lack of sensation.
Even though you have those three main complications, the most important complication of diabetes is actually heart disease. That in the end is what causes a shortened lifespan.
Dr. Mike Patrick: So it's really important as soon as it's diagnosed to really get the blood sugars under control and something that has to be managed on a daily basis, which I'm sure can be very challenging for children and their families. So how exactly do you treat Type 1 diabetes?
Dr. Angelina Bernier: So treating Type 1 diabetes is not easy. It takes a lot of careful attention and effort. We have to spend the first few days and weeks after diagnosis really educating family because they end up being specialist in the care of their children.
So it requires blood glucose monitoring. So you constantly have to check and see what the sugar is in the blood. And then, know how to respond to that by giving insulin. And insulin cannot be given as a pill. It can only be given as an injection or IV. So when they go home, it's still by injection.
So, parents, children are taught how to check their sugar, how to give insulin, how to dose that insulin based on their blood glucose, based on what their going to eat and how to react to any high or low sugars that might develop as a result of their management.
It's a lot to learn and it's a lot to master. And we have to be very careful to support them in that because it's not easy.
Dr. Mike Patrick: And I would imagine that at each developmental level, there's its own unique challenges. So whether you have a young child with diabetes, a teenager, young adults, older adults, I mean there's sort of unique challenges in addition to just learning a new language and learning how exactly you're supposed to control this.
I imagine the young kids don't like the idea of having to have shots every day, right?
Dr. Angelina Bernier: Absolutely. So it's kind of actually heartbreaking when we have our toddlers. So one of the peak ages is in the toddler loop. So I'll have like 18 months old and 20 months old and they just don't understand why we are hurting them to make them feel better.
And so, the initial process is just drawing a blood glucose test or even giving a shot of insulin is really hard all the time. Because they're having to hold their child and kind of restrain them to be able to give them the treatment. What's good is that they quickly kind of get accustomed to it, but it's still really hard on them at the beginning.
And teenagers, even though you'd think they take it okay, I'll have some of them that will be trembling every time we ever give them an injection or check their sugar. They quickly acclimate to it, but then they have their own kind of set of behaviors that we're trying to encourage them to be able to accept the diagnosis and not reject it, to try and minimize the distress that can occur.
Dr. Mike Patrick: And I would imagine there's then consequences beyond even the actual physiology of the diabetes itself, which is like mental health challenges. When you're dealing with a chronic disease and you're different from other kids, anxiety and depression and really feeling like you have a loss of control of things. This can all be other issues that go along with diabetes as well, right?
Dr. Angelina Bernier: Yes, absolutely. So diabetes, stress is a big one. And anxiety and depression are high. So pretty much any chronic illness of childhood is associated with increased anxiety and depression. So we have to carefully try and provide the screen for that and provide support in that area because it's a lot to handle and what comes along with that.
But in addition, unique to kind of Type 1 diabetes in emotional health is the other notions of eating disorders. So there are different things in regards to your diabetes management. There's insulin therapy and eating that children or teens can learn to manipulate. And then they subsequently will turn into mood and behavioral problems around eating. So that's an additional things that we kind of deal with.
Dr. Mike Patrick: Absolutely. In addition to just the glucose and the insulin, it's not like you can just say, "Okay, this is what your dose needs to be every day. There's so many things that can then impact what your blood sugar is, including your diet, how much exercise you're getting, whether your body is fighting off virus or bacterial infection. These are all things that can affect your blood sugar and then families have to learn how to sort of change the amount of insulin that they're giving in response to that.
Dr. Angelina Bernier: Absolutely, on a daily basis. Even if they do the exact same thing based on one sugar level and the same meal, they still can get a different response. There are so many factors that play in to your blood glucose level in addition to food, activity, insulin doses, stress, illness that you mentioned, even a girl's menstrual cycle.
There are so many different features that play in. The type of food, so is the reading carbohydrates to protein or carbohydrates to protein and fat? And then, the type of carbohydrates vary quite a bit. The glucose responds to that food.
So there's so many factors that we try to control but we really can't and so we try to manage as best as we can.
Dr. Mike Patrick: So lots of information that parents are digesting, especially when there's the new diagnosis and so many challenges. And I like that you likened it to drinking from a waterfall or drinking from a fire hose. I mean, there's just all these data and information coming at families and to digest that and then act upon it can be really challenging.
So how did you then arrived at an animated series as a way to provide this sort of education for families as they're trying to understand and deal and adapt with Type 1 diabetes?
Dr. Angelina Bernier: I was actually working several years ago at a city hospital. And they didn't have a lot of funding for diabetes education and support. So when children were diagnosed with diabetes, it was oftentimes myself sitting down with them trying to teach them about their diabetes and explaining and answering all their questions.
Usually, diabetes education takes several hours. You'll spend two to three hours everyday for several days trying to teach them all about how to care for this new diagnosis. And it's a lot for them to take in and some families can handle it better than others. And for some people, they're just pretty deep learning curve.
And because I didn't have anybody else to do it, and it fell to me, I didn't find great time to be able to do it. So I figured we should be able to have better resources for families to be able to learn a bulk of the information. So then I could follow up and answer questions.
So at the time, kind of the standard of care was using a type of book. So the Pink Panther Book is very a commonly used, I believe, education book that we give to families. But what I found in my patient population that they had issues with learning from text. So either because of low English proficiency or literacy. I would say, "Okay, take a look at these chapters and I'll come back and review them with you tomorrow." And they just either couldn't or wouldn't.
So, that's where I got the idea of making it as visual as possible. And I thought I could link together several YouTube videos online and be able to tell piecemeal of the story of Type 1 diabetes and management. But at the time, it's probably back in 2010, there were not a lot of resources online that could tell a whole story.
And so, that's where, I was like, "Okay, I'm going to have to make some of this." And so, I initially worked with the med students who was there at the program, and then some other undergrad students with some skills in software development. But when, I moved to the University of Florida, I actually got some really great funding to develop it. And that's when I started actually working with the Drawn from Valor group.
Dr. Mike Patrick: It is really a fantastic notion that you had. I know just from practicing medicine myself, you're just so busy. And you're really trying to take care of kids and then you have a family, home life, and you're trying to maintain work-life balance. And so, to come up with something that's innovative that can really make a difference for folks just takes up so much time. So I applaud you...
Dr. Angelina Bernier: Thanks.
Dr. Mike Patrick: For being persistent and creating something that is so helpful.
So Alan, she got in touch with Drawn from Valor. Tell us what exactly is Drawn from Valor.
Alan Caudel: Well, Drawn from Valor is a non-profit animation studio. We're dedicated to education through entertainment and empowering children and families impacted by mental or health conditions to live longer, healthier, happier lives. We work through animation to educate and entertain.
A lot of studies have shown that when you tell a story, it actually helps people to retain information better. So that's why instead of just trying to show literal information or showing literally the information, what we try to do is we try to create characters and create a story that will help to tie that information together.
Dr. Mike Patrick: So being a non-profit animation studio, how exactly do you assemble a team to do that? Usually, you think of animation as being for-profit business. How is it that you get folk together to do this on a non-profit sort of basis?
Alan Caudel: Well, we do have a lot of people who volunteer to work with us. We have kind of a combination of volunteers and contractors, as well as full time employees, all working together. And we had a team of about 50 people actually create this animation, Kara & the (Not So) Dire Beastie.
Dr. Mike Patrick: Fifty folks on the team?
Alan Caudel: Yeah.
Dr. Mike Patrick: That's incredible. And then, this is something that's freely available for folks to be able to consume. I guess when you think about the need for health-related education. If you sort of put it behind a pay barrier, that can really be an issue for actually accomplishing what your mission is, right?
Alan Caudel: That's right. All of our animation is available free. It's on our website and it's on YouTube. Our website is drawnfromvalor.org. And it is also on YouTube. And it's available for free in both English and Spanish. And it's our goal to try to make it accessible to as many people as possible.
Dr. Mike Patrick: Absolutely. And we'll put links, of course, to Kara & the (Not So) Dire Beastie and the videos themselves. But we'll also put links in the show notes to the Drawn from Valor Animation Studio so folks can learn more about what it is that you do.
So how did the partnership developed between Drawn from Valor and Dr. Bernier's diabetes project? How did that come to be?
Dr. Angelina Bernier: Yeah, it just so happened that we actually were brought together by a mutual acquaintance and it was great. I was at some function in the hospital and I was describing the project and the need I had for animation support and it went from there.
And it was great because the program that I actually work on is a comprehensive diabetes education program for the new onset timeframe, specifically to take care of children and family from their first diagnosis, not necessarily for continued education. And one element of the module that I was working on was an animated cartoon because of that whole notion of being able to tie this into memory better. Because in times of stress, people forget often what they hear, but they remember what they see. And so, a new diagnosis of diabetes in your child is definitely a time of stress.
So that's where the idea for an animation work its way through the modules of education came from. And then, when I had my first meeting with the Drawn from Valor group, I was indeed asking for a visual demonstration or an illustration of a specific topics.
And then I remember, one of the primary leaders in the group said, "Do you really want a literal animation or do you want something more creative?" And I was like, "I'm not sure, but tell me what you mean." Then, they came back a week or so later and they're like, "What you're seeing is about a story where this girl is diagnosed and then she kind of goes off into sleep and enters this kind of other fairyland. So that's what we're going to feature about how the body work and how that's pathology is in her body." And I was like, "Oh, my gosh, that is so great!"
Then after that, there is no turning back. So, we would meet on a weekly basis and it was so great because the team would present these ideas. And they're like, "How about this and this?" I was like, "That's awesome." "Have you thought about this?"
We would talk about different features like the A1c and the hemoglobin A1c which you are familiar with, Mike, probably testing in-patients with diabetes. And then, I remember Alan saying, "Well, that's kind of sound like the goblins. How about we have little blood goblins." And that's our hemoglobin A1c.
And he asked me... This is where I say the things that Alan did, was he took the image of what hemoglobin actually looks like biochemically and he drew that into a character. So anyway, there's layers and layers of this from a provider's perspective, entertainment and kind of like deeper meanings. But families really enjoy it as well.
So that's how we started and that's how we grew and made such a really special treat.
Dr. Mike Patrick: The story itself is really engaging. As I was watching through the episodes, I was going to have it on while I was working on something else. The next thing I know I'm just sitting back in my chair, watching and can't wait for the next episode and the next one. So it's really well done and certainly draws folks in.
So it's an eight-episode series and each episode is four to six minutes in length, so it's a total time of about 28 minutes to get through the whole thing. And I can see how it really would... The kids who are newly diagnosed, they have a character that they can relate to, right? Because, as it turns out, Kara ends up being diagnosed with Type 1 diabetes and just having that connection with the cartoon character really can ease anxiety for kids and families.
Dr. Angelina Bernier: It does. One of the first times I showed the character and it was just an initial clip to one of my younger patients. I think she was like six or seven, but she was actually very resistant to her injections, longer than it's kind of typical in that age range. And she would come in weeks and weeks after her diagnosis and her mom would still have to hold her down when I give her injections. She's constantly fighting.
And so, I showed her the character and she saw this little girl and she saw a picture of the syringe in another part of the education module and she's like, "She looks like me and she has a shot, too." And just kind of like that experience to her, and her resistance improved after that, just seeing another little character like that.
That's also why social networking and meeting other families is very, very important. But that's not anything that takes place a day or two within your diagnosis. This is something that they can be exposed to very quickly and early on.
Dr. Mike Patrick: And there's also the repetition of it as well because other training material, especially for kids, it's like "Okay, let's get through this and I want to move on to something else." But especially young kids like to watch the same animations over and over and over again. In fact, there are series on TV, that's what they do, they show the same episode every day for a week because kids like that repetition. And that also helps with the learning process too, right?
Dr. Angelina Bernier: Yes, absolutely. The way it's designed is not meant to be watched all entirely together. Each little four, five minute episode is actually in a module so that they can watch it at their own pace. And only if they want to get to the next one, they would go to the next section and keep watching it.
I realized that was good that we set it up that way. So when I have my children watching it, so my four-year-old daughter, when she was watching it, she would watch one and then it ended up after a few minutes, and she's like, "I want more. Put the next one up." So it's actually made them hungry for it.
Whereas, when it was at one point all connected together, and it's 20+ minutes altogether, they kind of tire of it too much at a time. But when it was in snippets, it was much better.
Dr. Mike Patrick: Yeah, absolutely. Just to give folks an overview, so, in Episode 1, you'll learn about the role of the pancreas and insulin glucose and cells. So, you got the science and yet, this is also then when Kara travels to Queen Regent's land. And so, you got this sort of learning about real science things but also the story starts to develop of where she's going to go with this.
And then in Episode 2, she learns the ins and outs of Type 1 diabetes and autoimmune disease, meet some characters like the RedBlooded Knight. The Beastie, what exactly is the Beastie?
Dr. Angelina Bernier: That is another Alan character he did so well. So, the Beastie is supposed to represent the cell. And so the cells in the body, the way that diabetes works is that you're missing insulin and in the story line, insulin is the key. And it's actually use in a lot of explanation to diabetes.
The key is what open the cell to allow glucose to get in. And without the key, no glucose can get in. And so then, the cell becomes pretty miserable. It can actually consume itself and shrink up and die because there's no force of energy of glucose that's able to get in.
And so, the Beastie represents the cell. So during most of the story, he's really not happy. So he's a dire beastie.
Dr. Mike Patrick: He's kind of hungry. He's hangry.
Dr. Angelina Bernier: Yes, hungry, grouchy and attacky like when you're hungry and angry till you can eat. And then once het gets this key, he becomes a happy beastie. So, that was all Alan.
Alan Caudel: The thing is the key opens his mouth so he's not able to eat the glucose which we have represented as something that looks kind of like snowballs. And because the Beastie has not been able to eat, snowballs have kind of accumulated across the kingdom. So it looks kind of a wintery landscape.
So, Kara goes on the journey to find the key. And once she does, she's able to unlock the beastie's mouth and he's able to travel around and eat up the glucose that makes everything better.
Dr. Mike Patrick: And then the Hemo Goblins, instead of hemoglobins, the Hemo Goblins, they're part of the story as you had mentioned and there's also a Bookworm. And then, she's going to travel to Sulin to reach the fabled knight, Sir Rynge. I mean it really gets into some complex plot.
Dr. Angelina Bernier: It was so much fun.
Alan Caudel: It's a lot of fun. One of the things was we love to make humor, we make a lot of jokes in there. So like the character, Sir Rynge, that always get a big laugh when people watch that. So, we wanted to make it less scary for kid.
Dr. Mike Patrick: Right. And yet, still learn about important concepts like hypoglycemia, hyperglycemia, the role of nutrition and carbohydrates and exercise, and new technologies in diabetes and these are all sort of weaved into that really fun storyline in a fantasy world. So really fantastic.
Alan, what sort of time and effort goes in to developing an animated series? I mean, you said over 50 people working on it. I imagine this takes a lot of time then as well.
Alan Caudel: It did, yeah. Well, when we started this project, this is actually our first completed project that we've done. So we are a growing studio. And so, when we first started it, we basically had to figure out how to make it all work. So from beginning to end, I think it was around two years that we spent making this from very beginning to end. Would you say that's accurate?
Dr. Angelina Bernier: Yeah, I think that's right.
Dr. Mike Patrick: So a lot of time and effort. Angelina, you'd mentioned that you got some funding for this. Is this something then, there's volunteer work that have more oversight that then probably I would imagine are getting some of their expenses reimbursed and the materials and computer time and all that to make it. I mean, how did you go about really figuring out how to pay for it?
Dr. Angelina Bernier: So it started initially with some grant funding I got here at the University of Florida. And that's what got everything going. And I thought it was sufficient to cover but I was very naive regarding the cost of this animation development. But then, Drawn from Valor, what's so special about our relationship is that this became their project and they wanted us to succeed.
So together, we would do fundraising and then they set up... What was it called, Alan? That online?
Alan Caudel: Yeah, I believe it was Indiegogo. We set a...
Dr. Angelina Bernier: Yes, they did an online fundraising program and we had a lot of people donate to that. And I think that's what actually finished out covering the expenses. So we ended up glowing through my grant.
Alan Caudel: Yeah, and we did more than just the animation as well. We did illustration for the e-books. We actually created a comic book version of the story as well. So that is also available. So we did a lot of great work with Angelina.
Dr. Mike Patrick: So, really, it was kind of online crowdfunding and I would imagine that the diabetes community would be very supportive of this. And they have pretty loud voice collectively on social media as they support one another and encourage education. And so, I would think that there are plenty of other disease processes that also have similar very vocal crowds within social media that could help fund these sorts of projects for other diseases as well.
Dr. Angelina Bernier: Yes, the initial support where I first started working on this, for me, I started actually at BU and the chairman I had there at the time, Barry Zuckerman, his vision for this moving forward -- and he kind of gave me some initial support with the beginnings of this project -- was that this could then be applied to many pediatric chronic illnesses.
He said the day of us trying to explain diseases and drawing it out on a piece of paper with a pencil, he's like, "We should be past that. We should be able to visually see how the disease processes works and how the treatment actually interacts and interferes and improves their progression so that they're not just taking our word for it. But they can then visually see it."
And so that was the overarching goal. Let's see what to tackle after this.
Dr. Mike Patrick: Absolutely.
Alan Caudel: And I remember, I believe that he was the one that also compared it to kind of like going to an auto mechanic. I believe that he had said he went to his auto mechanic and the mechanic was rattling off a lot of jargon about cars. And he just sat there thinking like, "I don't really understand what he's saying."
And he said, that may be kind of like how a lot of patients feel when the doctors are giving them all these information. So I believe that was one of the reasons why he wanted to do this kind of project.
Dr. Mike Patrick: And I'll tell you, when I'm trying to understand something new, especially related to like household projects, the first place I go is YouTube because there's really a lot of power of watching the visuals and seeing someone explain it and do it is just helpful in terms of learning and understanding it ourselves.
Dr. Angelina Bernier: Absolutely.
Dr. Mike Patrick: So how has Kara been received by patients and families? So you talked about the one young patient that you had. But by and large, are folks appreciative in getting something out of this?
Dr. Angelina Bernier: Yeah, I mean, my best answer to that is we took Kara & the Dire Beastie animations to the children with Diabetes Conference in Orlando last year and we had a viewing of it. And it was great.
The room filled up with families and children coming to watch it. And we got so much encouragement and feedback from families saying how much they appreciated that we were working on this and how it would have been so helpful for their children, and they see that it would be a great tool to use in the future.
So that was very encouraging and reinforcing for us, that it was a valuable commodity.
Dr. Mike Patrick: So any plans on future research studies looking at the effectiveness of this sort of education compared to more traditional ones?
Dr. Angelina Bernier: Yes, so, actually here at the University of Florida, I'm working with another researcher, Anastasia Albanese-O'Neill. She actually has developed a diabetes education website for continued diabetes education.
So you know how children are diagnosed at different ages, we provide a lot of education to families when the children are young. But then, the children grow up and we don't have a systematic way of assessing how much does the child actually understand as they become a young adult. How are we assessing their knowledge and then providing that education?
Even though we're a huge diabetes center, it's so hard to have those resources for everybody. And so together, we work to make a diabetes knowledge assessment tool that we'll be able to use in a clinical setting and then be able to connect them to those online resources and then assess their knowledge afterwards.
So Kara & the (Not So) Dire Beastie is part of the NODE Program, the New Onset Diabetes Educator. So that's the new onset diabetes program which has been kind of folded in to the T1D Toolkit, which is the website that we use at the University of Florida.
And so, the next big project will be assessing cross-sectionally our patient population with these knowledge and then giving the education intervention in little snippets and then assessing their knowledge afterwards. And then, we can see -- because we provide their clinical care also -- we'll be able to see if that is going to move the pin on their diabetes care.
Because when it comes to young adults and adolescents, nobody's doing great getting them to where we need them to be. Less than 20% of kids in that age bracket are actually at their A1c target. So we've got a lot of work to do. And I think this is going to be a great tool to do that.
Dr. Mike Patrick: And this is something that diabetes educators across the country, regardless of what institution you're at, is this something that they will be able to use?
Dr. Angelina Bernier: Absolutely. Across the world.
Dr. Mike Patrick: Yeah, wonderful. And we'll put links to Kara & the (Not So) Dire Beastie, the episodes, as Alan mentioned, in English and Spanish, we'll put those links in the show notes for Episode 438 over at pediacast.org. So folks can find those easily. And we'll have links to the Drawn from Valor Animation Studio.
And then, the NODE, the website that you were talking about with the collection of educational materials, is that live and ready for primetime yet? Or is that something that's still being developed?
Dr. Angelina Bernier: It is. So to make it part of our overarching diabetes education program, I am going to be doing a facelift on it. But the site for that is NODE, like node in the network. So node.t1dtoolkit.org.
Then, the main hub site for all our education material is t1dtoolkit.org. And we actually just tested out that site at the Children with Diabetes Conference this past month and got some really good feedback. So, yeah, we keep moving forward.
Dr. Mike Patrick: Perfect. And we'll put links to all those things that you mentioned in the show notes so folks everywhere around the world can use this as educational materials for their families with Type 1 diabetes.
Alan, so you mentioned this was the Drawn from Valor team's first project. What's down the road now? What are you guys going to work on next?
Alan Caudel: Well, next, we're actually working on a project about PTSD. We have a story that is about a family of squirrels who the father gets attacked by a dog, returns home and the family adjust to this new change in their life.
And so, it's a topic that a lot of people are dealing with and there are some stigma related to PTSD. So what we wanted to do is to try to lift some of that stigma as well as help kids and families to start conversations about this topic.
Dr. Mike Patrick: Yeah, very important topic. And there's so many important topics that you could do. Are you guys open for contacting you with ideas?
Alan Caudel: Oh, absolutely, yes. We have other projects that we have in pre-production right now. And we definitely are very interested in talking to people about creating animations based on a large variety of different topics. So we welcome anyone who wants to contact us about that.
Right now, we're currently doing a fundraiser for the PTSD project. Our fundraiser is called Draw 4 Hope, and we're on all of the social media outlets, #draw4hope. And we're doing some great live drawings with some great artists who are joining us. So it's a really good event.
Dr. Mike Patrick: Perfect. We'll put links to those things as well so folks can find you and support that effort, which again are so important. And I would imagine, folks could contact you through your website, Drawn from Valor Animation Studio's website?
A: Yes. Yeah, the website drawnfromvalor.org, it does have contact information. So you can just connect with us through that.
Dr. Mike Patrick: Great. Perfect. So again, we'll put all those links in the show notes. And I really would encourage families to watch Kara & the (Not So) Dire Beastie. Even if you and your family are not impacted by diabetes, it really helps, I think, all of us to learn about disease processes. And it gives us some empathy for the folks and the families who are going through that.
So, I think increasing health literacy and learning about especially common diseases is important for all of us to do. So I would encourage moms and dads and their kids to watch Kara.
All right, thanks once again to Dr. Angelina Bernier and Alan Caudel, thanks so much for being here today.
Alan Caudel: Thank you.
Dr. Angelina Bernier: It's been a pleasure. Thank you for having us.
Dr. Mike Patrick: We are back with just enough time to say thanks once again to all of you for taking time out of your day and making PediaCast a part of it. Really do appreciate that.
Also, thanks to our guests this week, Dr. Angelina Bernier, pediatric endocrinologist at the University of Florida and their health system. Also, Alan Caudel, creative director of Client-Led Partnerships with Drawn from Valor Animation Studio. Really appreciate both of them stopping by.
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Announcer 2: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.