Episode 27: Meet the "citizen scientist" winners of our Big Ideas for Eczema Challenge

Feb 9

Written By Global Parents for Eczema Research

In our very first “Big Ideas” competition, we asked those who live with eczema for big ideas that could lead to better treatments or a cure. Learn about three brilliant ideas from the winners to help kids with eczema in the future. Our guests are Armando de la Libertad, Nic Novak and Angela Tiru, parents and patients who used their experiences and insights to come up with innovative research ideas. (If you like our podcast consider supporting it with a tax deductible donat i on.) View the transcript.

Lynita: [00:00:00] In this podcast, we're doing something different. Instead of speaking to a researcher, we're speaking with parents and patients that live with eczema. Nothing can replace the lived experience and this understanding can lead to brilliant solution focused ideas. Our three inspiring guests today are the winners of last year's big ideas contest, run by GPER. Here, they explain their motivations and ideas to the founder of GPER, Korey Capozza.
Korey: Hello everybody. I'm excited to have with us today, the winners of the 2022 big ideas for eczema challenge, which was an international contest that rewarded patients and parents who came up with the best ideas for research. This is a timely episode because we are just about to launch the 2023 challenge.
Korey: And we hope our listeners will consider entering the challenge with your good ideas for eczema research that could lead to better treatments and hopefully one day a [00:01:00] cure or a way to prevent eczema altogether.
Korey: With us today are our first place winner,Armando de la Libertad, second place winner, Nic Novac, and third place winner, Angela Tiru, to talk about their ideas for research and their experience with the challenge. Welcome to the podcast.
Korey: So I think the first question we wanted to ask all of you is why did you enter this challenge? Like why did you think it was worth your time and worth getting involved with. Nic, did you want to go first?
Nic: When I saw it I thought it was super cool that this was being organized at all and relevant to what I was doing. So as a personal project for years, I've been taking all of these notes and doing this research about my own eczema and tracking data kind of like in a journal.
Nic: And so I thought just the mission of the project and the contest was something that was really awesome. And so yeah, I was pretty excited to send my idea in cause it was something I was already doing.
Korey: [00:02:00] Great, and Angela, did you want to go next?
Angela: Sure, thank you. What inspired me to enter? Besides obviously my son
was truly the GPER community. You guys really inspire me. The level of intellectual curiosity in the group. If you have that intellectual curiosity, you just can't help, but try to connect the dots and just being part of that group inspired me to, but for myself, the reason why I was doing so much research in the background, when my son was really suffering, it was my coping mechanisms.
Angela: So if I was laying next to him, and obviously you would not be sleeping well, and I would be rubbing him with one hand and then searching and reading anything and everything with my other hand and, taking so many notes and having so much of this in my head space, I sometimes would call it like brain soup.
Angela: This type of challenge encourages me to do something with that information that feels useful and beneficial. So thank you. [00:03:00]
Korey: That really resonates with me, Angela, cause you're struggling so much with it when your child is suffering, that you want to do something proactive and be part of the solution. So I really hear that. Armando?
Armando: Yeah, those comments that Angela made really resonate with me too.
Armando: Watching your child suffer and loving them so much and wanting them to have some kind of relief is a big motivating factor. I think of that Churchill quote, “Never quit.” And there were times where my daughter actually asked me to not give up on her, I'm sure that's going to resonate with whoever hears this
Armando: and so you can't give up and I have always felt based on all of the different conversations that happen within this network about different aspects of the disease and the microbiome and the skin barrier and the immune system and on and on, that there are answers right around the corner.
Armando: So I always feel like if we can just make the right connections [00:04:00] between different disciplines and strategies. We can make a lot of progress and that's what motivated me to pursue this. And I just can't wait to hear more about all of the different ideas.
Nic: I think a lot of people who have eczema or who have children with eczema are doing private research in their own house and just obsessing over it, maybe.
So the idea of a project or a competition like this, where that private research can then go out into the world and help more people than just yourself or your family is pretty cool.
Korey: Yeah, exactly. And that's really what we're hoping for. And I feel like a lot of times the wisdom that patients have from trying to figure out their condition or whatever it is, it's really discounted. But we know that when you live with something, you understand it in a way that nobody else can, and you're able to make those associations with exposures and treatments that you might try.
Korey: I really hear what Nick's saying. It's like, How do we tap that? And how do we share it in a way that contributes to the solutions and [00:05:00] also, how do we honor a patient wisdom and value it? So I think that was for sure a goal of this effort too.
Korey: Eczema is a long haul and there's so much disappointment on the road. How many of us have tried something that works for someone else and doesn't work for us, so you can never quit. And I think it does take that. So I just want to acknowledge, like that is the eczema journey.
Korey: And it's hard and it's true for adult patients too, who have been living with it a long time. So I wanted to ask, how did you come up with your idea? A. what led you to the insight and then B. weaving into that, what was your idea?
Angela: So you asked, how did I come up with the idea first? I mentioned earlier that it was part of my coping mechanisms. So just researching and reading anything and everything from diets and lifestyle and supplements. I started reading [00:06:00] about skin pH and the microbiome and supplements and nutrition. A lot of these ideas I would actually run into through many of the social media support pages. So it was the middle of the night and I was reading the Facebook support group pages or the GPER community.
Angela: And someone mentioned something. If it gave me an ounce of curiosity, I would be, you know, on Google Scholar trying to learn about it and eventually connecting some of the dots. On one of those rabbit hole journeys, I ran into some science on wound healing because I thought I don't have the answers necessarily for eczema.
Angela: But part of the scratching and the routine felt like a lot of damaging of
the skin and what I thought was really interesting is that the science about red light therapy showed improvement.
Angela: On many angles that are all indirectly related to [00:07:00] eczema. So a little background red light therapy was initially studied by NASA. They were looking to use led lights to create plant growth on the spaceships, but they had already known that astronauts tend to have a number of problems in space. And one of those was delayed wound healing.
Angela: So accidentally when some of the astronauts were doing the plant growing experiment. They noticed that one of the wounds that they had were actually healing much faster than normal. So that accidental connection led to a new lens of looking at this phototherapy. And when they did that, they started initially noticing that the red light therapy increased cellular energy.
Angela: And this cellular energy had a cascade of systemic or whole body benefits. And so it increased cellular repair, but it also [00:08:00] decreased oxidative stress and inflammation. So it painted an overall better systemic picture.
Angela: On not just the skin front or the wound healing front, but in the immune system and the domino effect of things that happen after inflammation, because we know that inflammation is the root cause of many problems. So if you can reduce overall inflammation, then you can improve other pitchers.
Angela: And so that was late 1990s, early 2000s. And since then, we've had over 4,000 studies, over 500 randomized controlled trials. New studies are coming out every day. And what seems really exciting about it is that in the areas where eczema has too much inflammation,
Angela: phototherapy improves that. And on the other hand, where people with eczema tend to have a deficiency, it improves that picture. I was thinking about how can I improve the overall landscape of his body biologically that might then improve sleep, improve itch, improve the time it takes for his skin to heal from scratching, improve his allergic response.
Angela: And improve the overall inflammation in his body. So we thought it has very low risk. The full body panel costs a couple of hundred [00:09:00] dollars. It seemed like a good investment and it’s something that the whole family can use actually. And we tried to make it fun, relaxing. We get in there with him. It's
not something that just he has to do.
Korey: I think that was one of the things that some of the judges picked up on too. They thought it was very child-friendly. And so many things aren't, they're just traumatizing for kids. And has it been working well for your son?
Angela: Yeah, so we have been using it for almost two years. We use it about three times a week. The unit comes with like red lights and near infrared lights. And it will explain in the owner's manual, like how far you should be from the machine and how long you should use it? So we set it up in a way that he gets to lay down in bed. We have a bunk bed, so we hang it from the top bunk. And he lays in the bottom bunk, the mini tanning bed at home. And we just lay in there together. We hang out, we read, he uses his tablet. We all use it.[00:10:00] And we actually use it right before bed, because it's also said to improve your circadian rhythm and increase melatonin.
Angela: So it does help him sleep. And it's a really healthy alternative to a soft light at night. And it’s turned out really great for us so I’m so happy to share the information.
Korey: Terrific, that’s good and Nick? How'd you come up with your idea and what was it?
Nic: I've been recording just how my skin is doing every day for years and years. So I have this huge spreadsheet of all these things and as a coping mechanism, for me, it has made me feel a little bit more in control. I just jot down what things are happening around that time.
Nic: And there might not be any obvious triggers that are happening at that time, but if a pattern is there and repeats, then I'll be able to connect the dots. And that's what happened in this situation where something happened and then years later, I was able to go back to the data. I was living in San Francisco and 2017, 2018 when there were all those crazy [00:11:00] wildfires.
Nic: And the air quality was very bad for long periods of time in the bay area. And I had a lot of skin inflammation and eczema at that time, I wasn't even really thinking if there could be a connection there, but one night
Nic: I remember where I think the pollution was at an all time high. It was like in the four or five hundreds of AQI, which is really bad. Like you could see 12
feet in front of your face. There was so much stuff in the air.
Nic: And I was out that night, dancing. So a lot of physical activity and I remember having a really bad flare up that night and in that morning. And that made me think okay, interesting. Like maybe there is something going on there. Because that was such a bad incident of pollution.
Nic: The EPA has data about air quality in almost every city. And I kind of like lined it up with my skin symptoms and the two graphs next to each other is very clear correlation of when there were spikes and air quality. And, when my skin was either more inflamed or in remission, and that pattern only [00:12:00] really became visible after I looked at about three years of the data.
Nic: That was the basis of my idea, which was a two-part thing. A. like, you know, journaling, in itself can be a valuable thing for people to do, because you have a chance of noticing these patterns. And then, that maybe pollution is actually acting as like a systemic trigger of skin inflammation.
Nic: I did some more research. Specific mechanisms have been proposed of how pollution might be acting in the body to produce this kind of inflammation. Oxidative damage is one of those potential mechanisms. And that kind of made me think, that there might be different people who are sensitive to different pollutants?
Nic: Different pollutants might be acting in different ways either in the same person or different people. Maybe those could be targeted specifically. Because if you can't remove the pollution in an area, if you are living in a city, but maybe you can target potentially at the molecular level, what the pollution is doing inside your body and block that or maybe there are ways that you can remove the pollution
Nic: from the environment or avoid exposure to it. [00:13:00] And yeah, I mean, my guess is this is a factor for people. There are different triggering pollutants. Maybe like a top five list that, if we could find what those top five things are and be on the lookout for those, then people could have awareness that those are triggering inflammation, then we could respond to those.
Nic: There's all this discussion about increasing prevalence of eczema and another thing that also is increasing, is pollution, and if that's something that's contributing to inflammation, it's sad to think there are things getting injected
into the environment and, it's sad that is happening and sad to think of like a potential route around it is bot removing the pollution from the environment, but blocking its effects.
Nic: And I don't really like that idea of submitting to like, oh, there is going to be all this pollution, but can we just counteract it? I just don't know if it's feasible right now to address the issue of all pollution.
Korey: Yeah, no, it's a big question I think you tackled. And what I loved about your proposal, it was such a great example of this sort of citizen [00:14:00] scientist thing, where you really like collected data and looked at it and analyzed it to try and come up with an answer. It was a very rigorous approach I thought that you took in coming up with your hypothesis and your clues.
Korey: And I appreciated that in your proposal, you tried to look at what do we do with this? What are the practical steps? But I think there's another piece here around prevention, because it may be that exposure to small particulate pollution early in life, we may be able to intervene there either with how we expose high risk babies early in life.
Korey: Cause it may be that this is one of those things that tips people over into the chronic inflammation state. So I just think there's a lot of insights here that will lead us to not just treatment, but maybe to really think about prevention and how you keep kids from heading into this sort of chronic inflammatory state that comes from the stress.
Nic: Is it good to be raised in a dense metropolitan area? I don't think that's something a lot of [00:15:00] people even think about.
Korey: Yeah and if you can't do anything about your exposure, can you put in robust filter system, which I know we had during the wildfires in California in our house running all the time to try and get that stuff out of at least in our indoor environment. It is sad to think that
Korey: inaction on climate change could be leading to eczema. And so many kids though, and I feel you on that like, is eczema in a way, a canary in the coal mine of a broader problem of our planet becoming just kinda more toxic to humans in a way. I think I hear that's what you're saying.
Nic: Yeah.
Korey: Really great work, coming up with your idea. Armando, tell us about your idea, which was the winning one this year. How did you come up with this?
Armando: My brain is just on fire right now because of these presentations that we've had already. My idea was really connecting the dots based on instinct and trying to understand
Armando: the skin as almost like an animal kingdom where different species are [00:16:00] competing for real estate and survival. And there are all of these different studies that seemed instinctively to be connected over time. And we’re increasingly finding that they are.
Armando: So there's the immune system and immune response, the microbiome and all of the species that are in the guts, in the nose, the role that staph bacteria plays in the exotoxins that it emits. And I think of that as an octopus or a skunk emitting some chemical that creates some kind of reaction and inflammation and therefore itch and scratching and that cycle.
Armando: And there are different pieces of the puzzle that have presented themselves in terms of the impact of farm animals. And the positive impact that can have on the prevalence of eczema, the topical probiotics, and the potential for eliminating or reducing staff through that method.
Armando: And we now know that asthma and eczema and food allergies are very much related. In my family, my daughter has an allergy to tree [00:17:00] nuts and so it's the protein in those substances that creates an immune response that is a food allergy.
Armando: And so with all that in mind, if we could just pinpoint some kind of protein that could create a positive immune response that would lessen the reaction of eczema then we might be in business. And, I had heard about the incidence of asthma or the probability of asthma being reduced for people that have a hookworm infection.
Armando: Hookworm is a parasite that is about the size of an eyelash. And so if somebody is infected with hookworm, they're less likely to have asthma. hookworm once it attaches to the intestines, it can create bleeding and therefore anemia. But my thinking was what if it could just take that protein and put it in a pill and have some kind of a medicine of that sort.
Armando: So that's the basis of my idea. Putting hookworm protein in a pill in order to help treat and manage eczema. And there are some other, similar approaches that have been taken, including with dust mites. [00:18:00] Some other strategies that have been taken for either food allergies or asthma and now eczema.
Armando: That was my idea and that's how I came up with it, trying to piece together all of those different clues that impact the atopic March, which is the prevalence in society of folks having more than one condition of those three asthma, eczema, and food allergies.
Korey: Thanks Armando.
Angela: I do want to say Armando, I love the way your brain thinks.
Armando: Thanks. It's a little bit scattered, admittedly, because I know that Korey and others are rightfully focused on research data and what can we prove? And I love that because we have evidence to work with. And at the same time, I always see
Armando: possible similarities or analogies that we can draw from other fields and feel like that can be relevant too, but also wanna see how we can find some obvious connections, like your idea around wound healing.
Armando: And, if we didn't have people in outer space that would have never been discovered. That's just absolutely amazing. [00:19:00]
Korey: Yeah and I wanna really just say I think it's that expansive thinking beyond siloed fields, it's going to get us there.
Korey: So I for sure appreciate that. Armando, I wanted to let you know that on the judging committee, there were several immunologists and they really appreciated your idea because it's really about retraining the immune system that's run amuck in a way. And so that rebalancing of the immune system so that it doesn't overreact is such a key part and I think figuring out how to deal with eczema over the long term. And the hypothesis made sense to them given that there'd been these associations with asthma.
Korey: And inflammatory bowel disease as well, which is interesting. So your ideas ultimately rose to the top of the pile and were selected for first, second,
third prizes in this first ever challenge that we did. And now we're trying to match-make you with research teams to move these forward into a pilot study [00:20:00] or into perhaps a collaboration.
Korey: So that your insights can feed into the research process. So I wanted to ask you all what do you hope ultimately comes of all this? With your idea that you shared?
Angela: You sharing what the next step is absolutely a part of a vision or a dream. And that someone who research is in the field of eczema would connect these dots and that we even get to be a part of the conversation is huge. I also hope that it encourages other people to listen to their gut and
Angela: advocate for themselves and stay open-minded and feel encouraged that you don't have to be a medical professional to come up with good ideas.
Korey: Yep, great point. Armando or Nick?
Armando: I'm hoping that this idea adds to what I hope will be a developing, almost like a [00:21:00] race to understand the microbiome. I feel like there are so many possible strategies, like putting this protein of the hookworm in a pill and comparing that to fecal microbiota
Armando: transplants, and dust mites trying these oral immunotherapies, comparing all these things and see, what kind of impact this has on staph, which is really a big culprit in this inflammation of patients.
Armando: So I'm hoping it just contributes to that curiosity and that pursuit in the research realms to try to figure out what probiotics, what proteins can we use? How can we manipulate different species to rebalance the microbiome in a way that modulates the immune system properly. So that's what I'm hoping for, this is just one little drop in a bucket of possibility. You're trying to understand how we could manipulate things to improve the condition of eczema for so many that are [00:22:00] suffering.
Korey: Yeah, a lot to talk about and think about there. And Nick?
Nic: Eczema is clearly a very complex process. If it had, one simple cause maybe people would have figured out what the cause was by now. But I'm just hoping the competition in general might encourage more people who might
have insights to start thinking about what all those potential causes are.
Nic: And, ultimately that new breakthroughs might come out of something that would be pretty amazing if the scientific community was able to advance knowledge about eczema in a way that could lead to less people having to suffer. So I think that would be like the ultimate hope.
Korey: Yeah, and we share that hope. I think that was what we were aiming for with this competition. So I wanted to congratulate you again on your winning ideas and thank all three of you for joining us on the podcast today.
Armando: Thank you for bringing us together and not losing hope. I know you’ve been at this for years. I really look forward to being a part of this journey together.
Angela: Thank you for having me and thank you for all that you do with GPER.
Nic: Thanks so much for having me and giving this opportunity for [00:23:00] us to share these ideas and I’m super excited to see where this goes.
Korey: Awesome, well thanks everybody.
And now it's over to you. We want to hear your big ideas for eczema research, this year's big ideas contest is launching February 13th. To find out more, visit our website at www.bigideasforeczema.com.