#213 - Evolving misophonia research and funding

Unknown Speaker [0:01]: Welcome to the Misophonia podcast. This is episode 213. My name's Adeel Ahmad, and I have Misophonia. This week I'm talking to Lauren, Dr. Lauren Hart-Hardgrove, Executive Director of the Misophonia Research Fund. We talk about the fund's origins and the evolution of research around misophonia. We start by getting a little into her background in neuroscience and her transition to the nonprofit sector. About the MRF and current research, we talk about some of the current focus areas of research, including prevalence of misophonia, potential treatments, and the integration of AI in research. Lauren also raises some important issues like the significance of community perspectives in shaping research priorities. and the challenges of conducting studies with diverse populations. Finally, we also talk about the funding landscape in general in light of recent turmoil in federal funding. But overall, Lauren rightfully expresses optimism for future developments and the power of partnerships in advancing misophonia research. After the show, let me know what you think. You can reach out by email at hello at misophoniapodcast.com or hit me up on Instagram or Facebook at Misophonia Podcast. And if you get a chance, please head over, leave a quick rating or review wherever you listen to the show. It really helps to drive us up in those algorithms to find more misophones. A few of my usual announcements. If you want to come on the podcast, just go over to misophoniapodcast.com and click the Be A Guest link. You can read about some of the AI research proposals that my system has developed at misophoniapodcast.com slash research, which we talk about in the show. And if you want to help support the show, misophonia.shop is open where you can get merch on the podcast. And of course, there is our Patreon at patreon.com slash misophoniapodcast if you want to join one of our incredible Patreon supporters there. All right. Here's my conversation with Lauren. Lauren, welcome to the podcast. Great to have you here.

Mrf [2:14]: Thank you. I really appreciate the opportunity. I've really been looking forward to speaking with you and chatting with you. So it's great to be here.

Unknown Speaker [2:23]: Yeah, likewise. I guess. Yeah. I mean, I've known you from the MRF for since you since you joined it. And then I was fortunate to bump into you at the Miss Funny Association convention.

Mrf [2:37]: Right. I didn't know you were going to be there, but it was really great. Actually, you know, it's funny when you don't when you always meet on Zoom, you feel like you know someone so well, but we had never actually met in person. So. It was really great to actually chat with you live in person. And so that was, you know, it was nice to connect that way as well.

Unknown Speaker [2:55]: Yeah, no, it was great luck. I didn't know you were going to be there. So, yeah, I mentioned MRF. Do you want to talk a little bit about MRF and kind of what you do?

Mrf [3:04]: Yeah, yeah. So I am the executive director of the Mississiponia Research Fund or the MRF, which you'll probably... I'll probably refer to it as the MRF throughout. But of course, that's how we originally met. The MRF is an organization that focuses on funding scientific research. So our mission is really to support high impact research projects with the goal of increasing our understanding of misophonia and understanding potential treatments for misophonia so that we can really help those who are impacted. And the MRF was originally founded in 2018 by Steve and Diane Miller, who have a family connection to misophonia. So actually their daughter has misophonia. And I think it was about 2016 that they, you know, noticed that their daughter was having kind of outsized reactions to certain sounds. And at the time there was not a lot of information out there. about misophonia. But, you know, as they started to learn more about it, they noticed that there weren't, you know, there really was not a lot of scientific research in the area, not a lot of answers to their questions. And so that's really why they founded the organization was to help support research that would develop, you know, an understanding of misophonia again, and really ways to treat it.

Unknown Speaker [4:38]: Yeah, that's great. Thanks for that context. I've seen you put the Miller family a little bit, but it's good to hear kind of how a family noticed it in their, you know, with a child within their family and then took the steps to launch foundation because I'm sure there are other families out there right now. So it's just good to hear how, well, not easy, but how possible it is to kind of make a difference in a pretty short period of time. Because I think, yeah, when I stepped into the community a little more deeply, it was around 2018, and we know there was inklings of this kind of happening. But there was, like, at that point, there was no money really going into research. So, yeah, things have really changed a lot. Do you want to also just, there's other terms like ream and milk in, like, how are these all related? Great question.

Mrf [5:31]: That is a great question. And I think other people... Also, you know, the question is, well, I hear about all of those names, but what is the connection between all of them? So Milken, the Milken Institute was the organization that actually helped to take that idea that Steve and Diane had back in 2018 and really helped to develop it into a grant making organization. So Milken, they are, you know, really their own organization. organization, but they received a grant from Steve and Diane to help develop the MRF. So that's how it all started. And they really were fundamental in developing the program. And the goal always was to build it into something that could you know, stand on its own legs and then to transition to in-house management. And so that's actually when I took over now, I guess in 2023 as executive director, it was really taking over from Milken who were doing some of the grant, you know, grants and program management.

Unknown Speaker [6:39]: Gotcha. Okay. So they, they put the, the typical infrastructure in place to, to, to use that money to, to do the typical stuff you need to do to, yeah, get the grants.

Mrf [6:49]: Exactly.

Unknown Speaker [6:49]: I see. Okay.

Mrf [6:50]: Yeah.

Unknown Speaker [6:50]: Cause Miller's just basically funded it. Okay. Okay. Yeah. That makes a lot more sense.

Mrf [6:55]: Yeah. So they were really great. I mean, amazing organization, the Milken Institute, and really, again, provided that, um, foundational infrastructure. And then you asked about REAM also. So the REAM Foundation, this is actually the kind of umbrella that the MRF sits under. So the MRF is an initiative of REAM. And REAM is, you know, we have, it's a family philanthropy, really. It's run by Steve and Diane. And they, you know, one of their philanthropic areas of giving, their major philanthropic area of giving is Misophonia through the Misophonia Research Fund. So the MRF sits under REAM. That makes sense. Yeah.

Unknown Speaker [7:44]: Okay. Okay. Yeah. Great. Well, thanks for clearing that up. We can probably go into the weeds a bit more. But yeah, I'm just curious, kind of, I guess how you stumbled upon the MRF because you came from a different background.

Mrf [7:58]: Yeah, that's right. So actually, once upon a time, I was in a lab doing research myself. So I have a neuroscience background. And my original research was really looking into kind of basic mechanisms of the brain. And so how does the brain work? How really focusing on actually something called synaptic plasticity, which is how the neurons in the brain wire and fire together. Yeah. And so that's my background. And I was, you know, it's so important in understanding the brain and understanding learning and memory and how the brain can recover from brain injuries, for example. But I wanted to take that fundamental understanding of science and really apply it at a higher level to helping people. And so I switched into the nonprofit world, actually in epilepsy. So I used to be in the epilepsy field. And I was at an organization called Cure Epilepsy that actually in some ways was similar to the MRF, many ways, because it's focused on providing grant funding, in that case for epilepsy research, but in order to fund, you know, scientific discoveries to impact people with epilepsy. And so to find really treatments and cure for the epilepsies. And actually, that organization was also started by parents. And this was a little over 25 years ago. But at the time, there was not much known about epilepsy at that time. And the field has come a long way since then. But again, it's been over 25 years. But that group of parents started that organization in order to support scientific research that would help. uncover discoveries in epilepsy and potential treatments as well. So there are actually some parallels between the organizations. Yeah. So then I transitioned into misophonia in 2023 when I learned about the Misophonia Research Fund and learned more about misophonia. It really resonated with me. in a couple of different ways, actually, because number one, reading more about misophonia, understanding the disorder, I, you know, and having my own child with sensory sensitivities, I really understood, you know, the impact that something like that could have on people's lives.

Unknown Speaker [10:41]: The whole family, yeah.

Mrf [10:42]: Yeah, the whole family, exactly, the whole family. And beyond that, also understanding, kind of seeing the parallels in the fields and understanding, well, you know, there's been a lot of knowledge developed about misophonia, but there's so much left to know and to understand and really wanting to help use my expertise in this field to help push forward scientific discoveries to help people impacted by misophonia. So I was really drawn to the position, drawn to the field, and actually really excited about and grateful for the opportunity to work in the field.

Unknown Speaker [11:21]: No, it's great. Yeah. It's good to have somebody with some, some connection to it. Um, yeah, I guess maybe that's curious about the focus areas. Cause it's, um, I guess how many now, I don't know, I don't know if seasons is the right one, but how many years of like, um, I guess grants have gone out so far, um, by the, by the MRF.

Mrf [11:43]: Yeah, so we are, so there have been six, we call them cycles.

Unknown Speaker [11:47]: Yeah, cycles.

Mrf [11:49]: Yeah, yes. But I like seasons. I like that. But we have been, we're actually on our seventh call for proposals. So we call them and where, you know, we ask researchers to send in their ideas for research projects and we evaluate them. in a number of different ways, you know, make sure that they are scientifically rigorous, that they are actually important questions in the misophonia community, that they'll push forward our understanding of misophonia. And then we, you know, select the top applicants to fund. So right now we're in kind of the middle of the seventh cycle where we're, you know, just now kind of, about to receive the applications. And so there have been six, I think, really successful rounds of funding so far and some really, really interesting research that has come out of the past funding, really impactful research. And I can go into the different kinds of grants we fund.

Unknown Speaker [13:04]: research projects but um but yeah it's been you know in the grand scheme of things it's not that long but they're it's amazing how much knowledge has been gained about misophonia yeah no that's that's that's quite a long time especially because i think i think a lot of these uh studies most studies tend to be around a couple years so that's at least like three you know cycles of like actual results coming out right and then obviously stuff trickles in as well Yeah, I guess I'm curious. Well, I'm curious, like you said, about the focus areas and what researchers are working on. I'm also curious kind of how that maybe has evolved since the Millers first, you know, put the money in versus kind of, you know, how the direction has kind of evolved over time based on what people have learned.

Mrf [13:51]: Yeah, that is a great question. I mean, so many things have evolved really just from, if you start first with our, you the types of grants that we're funding. We have actually added this, just this year, a new type of grant that will support even more junior investigators, graduate students, because we understand that we need those young, we need young folks to come into the field of misophonia, stay in the field of misophonia, and really devote their expertise to it. So not only have the types of information that we're asking for, has that evolved, but also just the basic grant mechanisms have changed. We're looking for really pilot data to seed those bigger projects. But in terms of what we're focusing on for the research, there had to be kind of a fundamental characterization of misophonia. And that is really what the organization has been focused on over the past, let's say, five, six years, understanding who is impacted by misophonia, understanding what makes someone more likely to have misophonia. And we're still working on building up that fundamental knowledge, but really putting understanding the clinical characterization of misophonia has been a big focus. Also trying to develop diagnostic tools for misophonia has been a big focus and saying, well, you know, we know people have misophonia, how do we diagnose them? And how do we understand, you know, the difference between this person with misophonia and this person who may have something that is similar, but it's not misophonia. Just how do you, how do you, in a standardized way, diagnose someone with misophonia. And so that's also what we've been working on over the past years. What we have, and also I should add the third really maybe most important category is how do we treat someone with misophonia? You know, we have people, yes, we need to understand what's happening that's causing misophonia, but we have people that are suffering now. and need treatments now. And so another big focus has been exploring possible treatments for misophonia as we understand more and more about the disorder. I think what's interesting now, the place we are in the field and all of the exciting knowledge that we've built up over the past, again, there's still so much we need to know. But now we've begun to kind of hone in more on the neurobiology of misophonia and trying to understand more about what's happening in the brain, understanding other potential contributing factors like genetic, potential genetic contributions to misophonia. I can describe the research more, but that has been a focus. Also incorporating AI approaches, which I know you're big on with your own exciting project and harnessing the power of machine learning and AI towards understanding misophonia devices. That's another big thing that we've been incorporating and seeing more grant applications on. So I think it's really exciting seeing all of, looking at where we are right now with technology development, with machine learning and AI and applying that now to the field and also kind of understanding more about the basic neurobiology of misophonia as we still focus on the clinical characterization and treatments of it.

Unknown Speaker [18:01]: yeah so yeah what i'm hearing is yes it's so early days that yeah there's different legs of what you're what you're focusing on is like trying to study where what it is at a you know biological level if if there is if there's that strong connection there um And then all the way up to like, yeah, how to treat it. Which is kind of a pretty wide surface area. Yeah, exactly.

Mrf [18:26]: Well, there's so much still to know.

Unknown Speaker [18:29]: And yeah, I mean, not to dwell on AI or anything, but yeah, the little project I have was really came out of like, there's so much surface area that I don't think, what I'm seeing is like, we're not even scratching the surface. So can we use AI to kind of like look at past research and come up with new research ideas? And then I've also seen, I guess, since, you know, I think I've heard of like proposals that are looking at using AI to, you know, to scan the face or things like that to try to diagnose maybe, you know, which is another application. Yeah, I guess I'm curious. What are maybe some of the standout applications um, I don't know, blockbuster kind of, uh, findings that have, that have come out so far, uh, that you can't talk about.

Mrf [19:21]: Yeah. It's hard. It's kind of hard to know. There's so much exciting research going on. It's almost hard to know where to start, but, um, I do think that there are some really important studies that will help us to now get to the next step, um, of, of pushing things forward in a number of different ways. Um, So first of all, you know, there was a recent, there have been past studies on this, but there was a recent study looking at the prevalence of misophonia. And I'm actually, we're just started funding another study on the prevalence of misophonia. I'm a researcher at Duke, but there was a recent research study that showed that, you know, 4.6% of people in the U.S., this was a U.S. study, reported clinical levels of misophonia. And beyond that, 78, about 78% reported some sort of sensitivity to, you know, typical misophonia trigger sounds. And this is, these are huge numbers. Because I think at one time it was thought to be really rare and, you know, not many people have misophonia or at least, you know, the awareness of it is very low. But I think this type of information in understanding the prevalence, and again, this is just one study This is a study by Dr. Laura Dixon, one study of many showing that the prevalence is higher than we thought. And this is really important because we need to know how many people have misophonia to really gain the attention and the awareness needed to increase funding, for example, at the federal level and increase support. of funding in support of research. So that kind of research, I think, is very exciting in terms of understanding more about how many people are impacted. There's also been, I think, some really interesting studies looking at potential treatments. So we don't have the the treatment. And I don't even know if there will be the treatment for misophonia because people with misophonia experience, you know, I don't think so. There's so many different ways you can experience misophonia and so many different types of treatments that will probably need to be developed in order to adequately cover all of the different types of presentation of misophonia. But some of the things I've been excited about is research coming from a lab, the Dividenko lab, Dr. Dividenko, that showing that the negative impact of a trigger sound can be reduced if the sound is presented alongside a different source than what the sound is. And to say that in a different way, that might be more clear. You know, if someone's trigger sound is, let's say, chewing. their reaction or their negative reaction to that trigger sound, it can be lessened if that sound is presented with a different source, let's say leaves crunching. So if they see a video of leaves crunching and hear that sound, if they're able to interpret the source of that sound differently, it is reducing the impact of that sound. And this is actually research that we are... now funding again to push it even further and see, well, you know, maybe this can be developed into some sort of therapy, one potential type of therapy for people with misophonia. But there's so many other really exciting discoveries looking at, you know, potential motor bases of misophonia, looking at different areas of the brain that are involved in misophonia, looking at different types of treatments like transcranial magnetic stimulation, which is a kind of non-invasive treatment that uses kind of magnetic pulses to stimulate certain areas of the brain. And this treatment is successful in other disorders and may also be successful at showing some promise in misophonia. So I think that there are a lot of discoveries out there that have the potential to really help our understanding of why misophonia is happening and beyond that ways to treat it. And that's just a small sampling, but I think I get really excited when I just hear about all of the research going into misophonia.

Unknown Speaker [24:15]: Yeah, I've seen the transcranial one. And is that something that you wouldn't do in a trigger, right? It's the kind of thing that you would get treated for and then you can go out in the world and potentially not get triggered? Yeah, that's very...

Mrf [24:38]: yeah good question um so you know first i should say a lot of this is these are laboratory studies right now so this is not um you know there has to be more study into these things that I'm mentioning in order to actually implement them in a real world setting. But it would be, I think as we learn more about how these potential treatments work and ways in which they might be applied, the idea would certainly be that it's not necessarily after the trigger or when the trigger is happening, but it would be great if these could be applied in advance and then work over time so that it's preventing the misophonia trigger from actually having an impact. But at this point, I think that these things are still being studied, still being developed. We're not necessarily there yet in terms of letting them loosen into the world, but I think there's a lot of promise and certainly these different methods are showing us what might be possible in terms of a therapeutic treatment.

Unknown Speaker [25:56]: Yeah. And the reason, right. The reason why I asked is because, yeah, when I, when I look at, when I look at these studies, I'm thinking about, well, where, how could this be a treatment? The, the Devodanko study, I'm like, I mean, are we trying to suggest that, and we probably aren't trying to characterize, but I would hope we're not trying to suggest that we're supposed to walk around with a TV in front of our eyes. I'm trying to push the field towards a little bit of a deeper, more nuanced understanding. When I see stuff like that, I'm like, I hope that's not what they're thinking.

Mrf [26:33]: Yeah. Well, you know what? That perspective is so important, Adeel, and I'm so glad that you actually brought this up because it's something that I wanted to mention anyway. It's the importance of your perspective and the perspective of people who are actually impacted by misophonia. Because one thing we've really been trying, as you know, to incorporate in our... in our grant funding and in our operations is that perspective because it is so important for researchers, you know, researchers have amazing ideas, but it's not necessarily what the, what might be relevant or most important to the community of people who are actually impacted, right? Or let's say some things might be impractical or might need to be tweaked based on what the needs are of those who, and practicality of those actually living with misophonia. And so I really appreciate these comments and your perspective because it's just something so important for us as researchers to keep in mind as research studies are developed is really, okay, well, What is the perspective of someone who might actually be either participating in the study or actually be utilizing, let's say, this treatment or going through this, you know, this diagnostic testing? And how do we incorporate that to make it actually relevant and really make sense?

Unknown Speaker [28:11]: Yeah, no, I appreciate that. And yeah, I know there's a big push to, you know, get voices of more people. And actually, that brings another point. And, you know, I'm not a scientist or researcher, but sometimes when I look at some of these studies and I look at the sample sizes, they seem pretty low to me. Sometimes they're like around 100. Sometimes there's studies that are like... less than 10 people i'm curious is there is there a concern in the or is this kind of normal or is there a push to try to get more you know misophones diverse misophones uh to participate in these studies or is it too expensive i don't know

Mrf [28:50]: Well, I mean, you hit a number of different things. First of all, it is, you know, research is expensive and it's unfortunate that that's kind of how it is. But for that reason, oftentimes studies have to be replicated or, you know, you'll start with an initial study, see what the results are, and then... and then, you know, hopefully move on to a bigger sample size. And sometimes it's initial pilot data, that's what we call it, that's collected, that then goes into a bigger study. And so, you know, again, you know, sometimes it has to start small in order to get bigger. For certain kinds of studies, you don't need as big of a sample size, but in order to understand all of the different... you know, again, misophonia is heterogeneous, right? So not everybody is experiencing things the same. It looks different in different people. So to understand all of those different presentations, you really need a sample that's representative of the general population. And sometimes that can be hard to get in studies, depending upon where the study takes place or, you know, who they're able to actually get to come in. But that being said, the having that diversity that matches the actual real world is just so important. And so it's definitely something that we are trying to encourage and we take into account for our studies and sometimes studies that we fund, I should say. And sometimes it's achieved to a greater or lesser extent. But I think there are some ways that we can hopefully encourage participation from different groups of people to make sure that that diversity in a number of different ways is captured in studies and in study participants so that whatever the findings are really is, you know, you're able to take those findings out into the real world and it just does not apply only to one subset of people.

Unknown Speaker [30:58]: yeah and um do i do you want to talk about so there was the you know i mentioned the association convention i think i think there was also a mrf meeting around somewhere around last fall too where the scientists got together um do you want to talk about like i don't know some of the conversations that came out of that some of the um things scientists are you know talking about the most

Mrf [31:21]: Yeah, yeah. So every year the MRF gathers together our funded investigators for a meeting. And really the goal of that meeting is for the researchers to share their data and be able to, you know, present updates. have conversations and ask questions of each other, really with the goal of making their research studies rigorous and knowing kind of, you know, well, I've found this out, what should I do next? But we also incorporated this year a couple of different things, this past year, I should say. Number one, we had Chris Edwards from So Quiet come out to really lend that, you know, patient advocacy, and lived experience voice. And we hope to do this even greater extent in the future. But really to start to promote crosstalk and conversation between the research community, or at least our researchers that were there, and the community actually impacted by misophonia so that there is that understanding. And that was really great. And I really think helped our researchers to understand, okay, well, this is what it's like to actually have misophonia and then bring that perspective back into the lab. So that was, I think, a really great component. We also had a kind of a wrap-up session, which was supposed to be forward-looking to understand, okay, here's where we are now in misophonia with the research, but what do we need to do next? And we called it Roadmap Forward. And so the idea was, and it was just a small beginning, but try and understand how do we build that map from where we are now to actually having these treatments for people with misophonia. And so I think there were some really great insights that came out of that. Although, you know, it's a conversation that needs to continue, but some of the insights were what we need to again really understand misophonia keep on characterizing it so we understand even you know who who is uh most at risk for developing misophonia how is it different in different cultural situations which we have a researcher looking at um understanding the neurobiology and really building that knowledge so that we can hopefully develop targeted therapies in addition to some of the more general therapies, which are also really important that are being developed. But, you know, if we can understand that fundamental, have a fundamental knowledge of misophonia, how do we develop those targeted therapies? And also, you know, again, harnessing kind of the power of large datasets, being able to standardize datasets, and being able to put all of our resources in one place so that we can make the most use of the information that's coming out and move things forward were some of the kind of learnings from that conversation.

Unknown Speaker [34:49]: That's cool. Speaking of data sets, I guess, does the MRF require all data to be public so that other, even lay people can, because these days, anyone can analyze data if they have access to certain tools. I'm curious, how much is MRF pushing for open data?

Mrf [35:18]: Yeah, great question. And we think it's really important. So actually in our standard contracts, in our agreements, we require data sharing. The data sharing does not always happen kind of on demand because oftentimes researchers need to, they need to be able to analyze their data and we'll, typically publish that data. And then usually at that point, they will open that data up for other people to be able to access it. But we do ask our researchers to publish their results in open access journals, for example, so that anybody can read it. And we ask them to make data available because we do think it's really important that there is... you know, data sharing so that data can be mined, data can be combined, and that people with different kinds of expertise can look at data sets. And you never know what you might come up with, right, if someone with different expertise looks at it. So, again, it's not necessarily kind of while they're collecting the data. There's usually a period of time before that data is made available. But we definitely support data sharing and open data.

Unknown Speaker [36:40]: Yeah. Yeah. Um, no, it's just, um, that's interesting. And yeah, it's interesting to see what, what, um, people were talking about during that. Um, we, we said during that, that, that last session there, um, and one, one thing that stuck out is like, is looking at, you know, what people are maybe at risk for developing misophonia because When I look at a lot of the studies, they're usually about treating that symptom, almost like kind of the medical model of looking at misophonia or purely biological, where something I don't see studied enough is like the childhood, what was going on around the environment. Because a lot of the people who come on my podcast, were experiencing some very tense and difficult moments. Not necessarily wartime PTSD, but a lot of challenging environments. And yes, it's not everybody, but I think kids look at things in different ways. But there's been an overwhelming amount of people who have very tangible things that were happening. I know that there's longitudinal studies that could happen, but I think there's also things that could happen cross-sectorally in terms of asking the right questions. And I know there are validated questionnaires. I'm not going to ask if people are talking about it, but this is something that if anyone's listening, I would hope that trying to look at who's at risk for developing misophonia starts to look more at... that zero to 10 age and try to understand what's going on to the child, but also oftentimes the parent's background influences what's going on in the home.

Mrf [38:36]: Yeah, that, you know, I think you bring a really important point. That is that we need more research looking at those younger ages, like you said, to understand, because, you know, in many people, it does develop early on, but what's happening early on and what what makes people go on to develop misophonia. So I agree, I think that we need. you know, hopefully, well, I'll talk about research we're funding right now, research that we're now funding in a moment, but we welcome more proposals that study that, you know, that childhood, that early childhood age range so that we can really do those studies that are necessary to understand. what is putting certain children at risk for developing misophonia.

Unknown Speaker [39:26]: And I think you guys have looked at it potentially or talked about or, you know, I've had people on the podcast like Dr. Brad talk about epigenetic factors as well. So it might not be something happening. writing that home but it could be like could it like i said could have been a previous generation um yeah i don't know these are these are the kinds of things that really interest me in terms of looking at after having spoken to to people um yeah Yeah, I guess, do you want to talk about, well, yeah, do you want to talk about some of the stuff that you're excited about that are, you know, down the pipe?

Mrf [40:01]: Yeah, definitely. I mean, just actually staying on the topic of childhood, we're actually studying, we're funding Dr. Tiffany Wainerowski at Vanderbilt this year to look, to do a longitudinal study. to look at how decreased sound tolerance develops in early childhood. So her plan is actually to track the same group of people over an extended period of time to understand how decreased sound tolerance can develop and see are there ways that you can identify, okay, these kids will go on to develop. decrease sound tolerance and maybe that might make it possible to, to develop some sort of early intervention. Um, so I'm really excited about that work and might actually get at some of the questions that you're asking as well.

Unknown Speaker [40:53]: Yeah. Yeah. That's really interesting.

Mrf [40:55]: Yeah. Um, so I think that that's really interesting. You know, some of the other things coming down, um, the pipeline, or at least for the MRF, what we're, we're, uh, funding right now is, I think I mentioned that we're funding a genetic study that's out of Yale, a researcher called Dr. Thomas Fernandez, and he's going to investigate possible genetic risk factors that may be at play in misophonia. And we'll be looking at children and their parents. And so that may help to help us to characterize or understand more about misophonia and So that's exciting. Also, I want to mention, because you talked about this as well, being able to objectively diagnose someone with misophonia. So we have a researcher that we're funding now that is actually hoping to develop kind of a toolkit that can be used to objectively evaluate misophonia severity by looking at things like facial responses, pupil dilation, and other responses, physiological responses that can be measured. with a tool and can help us to understand more about how to objectively diagnose misophonia. So I think that that's really great as well in terms of providing a tool for us to use, hopefully, in a clinical setting.

Unknown Speaker [42:36]: Yeah, I think especially if it's related to scanning a face, that can potentially be done in many different milias. So yeah, that would be a really interesting tool. I guess, yeah, you mentioned like, you know, you guys are funding it, but there are, you don't hear so much about other funding sources. I'm kind of curious. This can kind of lead into one of the questions I know you want to talk about later. But other than like the MRF, do you see any other kind of big players emerging in terms of or collaborating with MRF in terms of trying to get more attention into the space?

Mrf [43:23]: Yeah. So there are, the MRF is a major funder of Misophonia Research. And, you know, we devoted over $14 million really to Misophonia Research since Stephen Diane Miller founded it. And there are other private donors as well that help, you know, that have really been instrumental in pushing Misophonia Research forward. There are We would love to see more federal funding going towards Misophonia. And I can talk about that in a moment. But there are other organizations. So So Quiet does have small grants for Misophonia research. There are kind of abroad other funding organizations such as... For example, in the UK, there's the Wellcome Trust that has funded researchers that are focusing on misophonia. Back here in the US, there are researchers that have found success with federal funding. So federal funding can be available from the NIH. But we, again, we really want to to advocate for greater federal funding dollars going towards Misophonia. And things like that study I mentioned, the prevalence study, show us the importance of focusing federal funding dollars on Misophonia because it is really impactful and really debilitating.

Unknown Speaker [44:58]: Yeah, yeah, yeah.

Mrf [44:59]: The national and international issues. So, you know, we're hopeful that there will be greater and more sources of funding for misophonia research going forward, in addition to those that are already existing.

Unknown Speaker [45:17]: Gotcha. Yeah. And then I guess, yeah, you know, about federal funding, obviously it's one of those things in the news that is getting probably lost under a lot of other drama happening. But I don't know, do you want to take a moment to just talk about that? I mean, obviously, you know, you talked about the importance of it. Like, is there anything people can do to try to salvage something there or help it grow?

Mrf [45:45]: Yeah, yeah, that's a great question. I mean, there are, you know, there's a lot going on federally right now, but we definitely want to make sure that this is not lost, that the focus on the importance of those dollars for biomedical research in general is not lost. And then more specifically for increasing the amount of dollars, federal dollars going towards misophonia is not lost amongst everything that's happening. We just really want that to stay at the forefront. And so there are ways that people can help. So, you know, Number one, just really spreading awareness is something that anybody can do. Misophonia is growing so much in awareness right now, but there are many people that still don't know what misophonia is. So if nothing else, people can talk about it and can educate others on misophonia and really just amplify knowledge of misophonia and spread the word. And that's just really something that you can do in any situation you're in. And it's funny, the more I talk about it, with people in different settings, and describe what misophonia is, you learn that they know someone that has misophonia, they have misophonia, and it resonates with so many people. So I think just number one, just talking about misophonia and spreading awareness is something that people can do. And they can also, on a federal level, you can contact your policymaker to push for increased governmental funding, and then in that way, support the focus on federal funding dollars going towards misophonia. So I hope that we, and I know with all of our voices united, this will not get lost and we can push forward on this particular subject of focusing more dollars in the field.

Unknown Speaker [47:51]: Yeah, and kind of related to that point, I just thought about something. I know we've been talking about it so quiet with Chris and others is, you know, Misophonia seems pretty prevalent. And, you know, they're so quiet. But there are, you know, other conditions which are definitely not as prevalent. um but seem to be much better known and much better funded in terms of like their um you know their own kind of like uh their own non-profits that that kind of were grassroots i'm just curious like do you have any i guess tips for the other tips for the large community or for for non-profits or advocacy groups to to um Well, to get more awareness, but also to reach people who can kind of help, people who have means to try to build a stronger community.

Mrf [48:47]: Yeah. Yeah, you're right. There are so many disorders out there where, like you said, the prevalence rates are much lower, yet the funding dollars and the awareness is greater. And one thing I think we need to remember is that, you know, Misophonia, many of those conditions, awareness of them has been around for longer. So, you know, we, I think it's amazing the strides that have been made in awareness over the past, you know, past years, but it is still a relatively young field. And so that just means that we just need to be, you know, keep being loud, keep making noise, and keep getting the word out there, not only to potential federal funders, but to clinicians, you know, provide educational materials. And I know SoQuiet and others working on that, for example, the Duke Center for Misophonia and Emotion Regulation, but just to keep getting the word out there again. and raising noise. But there are also other things that are being done right now that I'm really excited about that I think will help us to get that awareness. So for example, there was a recent proposal ICD to get an ICD code for misophonia that was done with several of our partners that proposed this. And so the ICD code It's a code that helps to classify diseases. And it's used by health care providers to diagnose patients and document their health. And so it's really important because there was not previously a code for misophonia. But now with this proposal, I think what it will really help is with recognition of misophonia on that level and being able to get reimbursement for health care, for example. So that's really important and will also help towards what you're talking about, which is increased focus on this because there will be a recognition of actually there's more people than we thought that have misophonia and we really need to focus our efforts on understanding and treating misophonia because of how prevalent it is. In addition to all the getting big names on board, And so, you know, there was the recent celebrity announcement through the Duke Center in partnership with an actress, Melissa Gilbert, who announced that she had misophonia. And that kind of thing can also really help to spread awareness of misophonia. So I think that as... you know, the research and understanding grows, that as awareness grows, I really do think that all of this, because misophonia is not that old of a field, it will all contribute to, you know, to building this up into having the awareness and finding that we need to be devoted to it.

Unknown Speaker [51:58]: Yeah, you're right. I guess when you're in the thick of it, of the community, it seems like things are going too slow. But everyone else had their Kelly Ripa moment probably decades ago. So there's much more awareness in some of these other disorders. But no, that's cool. But it's hard, right?

Mrf [52:18]: Yeah. I was just going to say, I mean, it's hard because it does. For example, research. Research goes slowly. But for people who are... suffering now, it's too slow. And so, you know, we are really hoping that we can help accelerate the research, partner with others to accelerate the awareness because it's really, you know, yes, these things move slowly, but we need them to move more quickly. So it's something that we're we're trying to help promote is just accelerating, especially the research, since that's our focus.

Unknown Speaker [53:00]: Yeah, no, that's great. It's great to hear that different directions being looked at, hopefully a little bit more focused on some of the directions I'm most interested in, but I'm just one person. But yeah, that's great. I guess any, for the coming year, so yeah, where are we now with the MRF? There's going to be, has a deadline passed? I forget now.

Mrf [53:24]: Yeah, yeah.

Unknown Speaker [53:24]: Okay, yeah. What's happening then? I guess maybe, yeah, what's happening over the next year? Yeah.

Mrf [53:29]: So the deadline for this cycle has passed for this grant cycle. So we are we have not done any. The next step will be to actually select the awards and then grant those awardees for this year for them to actually conduct their research. And we usually have our open up our next call for applications in the fall. So probably about the end of October of this year, we will be releasing our next call for applications. So for people who are researchers out there, and we're looking for researchers that have any kind of expertise, they do not have to currently be in the field of misophonia, or they can be, but really anybody who wants to apply their expertise to understanding misophonia and looking for treatments, we welcome applications from them. So we'll have more information out about that later, but people can always go to our website. And on the flip side, we're also looking to grow our community of people who are actually impacted and affected by misophonia and looking to connect in order to again have that voice present in our operations and so we do now on our website have a place where people can connect with us a contact us page and we welcome any and everybody to come and join our community And we have a couple of projects that we're really excited about in the works focused on, you know, increasing communication of the research that's being done, of research discoveries. And I'm really just very hopeful about all of the progress that we're making.

Unknown Speaker [55:23]: No, that's cool. And then for prospective researchers who are going to look for maybe the next cycle, I mean, I guess, yeah, I just want to clarify, it's researchers who have a sort of pedigree, right? It's like you have to be part of a university or is it, you know, if I have a great idea and I can get a bunch of people, I can't like apply to MRF.

Mrf [55:49]: No, you would. Well, if you have a great idea, we would love to hear it. But you do need to find a research director.

Unknown Speaker [55:56]: A principal investigator, a PhD and all that jazz.

Mrf [55:59]: Yes, yes. So you would have to partner with somebody at a research institution in order to actually apply. But, you know, if you had a great idea and we would always be interested in learning about it and could certainly connect you with. a researcher, but yeah, it can't just be some, you know, you'd have to have a connection to a researcher, someone who is either a graduate student, a postdoctoral researcher, someone who has a degree in the related field to their study, to what you're proposing, to actually put in an application.

Unknown Speaker [56:40]: International researchers, are you finding a lot of researchers applying from international? And kind of what are you seeing in terms of the trends of U.S., U.K. research versus what's happening overseas?

Mrf [56:55]: Yeah. Yeah. So we I last year we had about 50 percent international applicants. And this year, I think we actually maybe even had maybe about the same or even more international applicants. So we do accept except. Applications from. you know, both within the US and internationally. And so it's great to see actually the geographic spread of those applicants grow beyond the UK. We've had applications from, you know, New Zealand, Israel, Canada, Poland, France, so all over and we really welcome them. And it's really great to partner with. institutions and researchers abroad as well.

Unknown Speaker [57:48]: Cool. Well, um, yeah, I'm not, I've looked at the, an hour's already gone by and I know we can, I know we can go on. Uh, but I think, yeah, I think we hit a lot of the stuff that we initially definitely wanted to talk about, but, um, yeah, I don't know anything kind of anything else you want to, you want to share for, for listeners or, or.

Mrf [58:07]: Yeah. Well, first, I guess what I really want to leave with is just, again, how grateful I have been to be able to, you know. to take this position at the MRF to see things grow even during my time here. And I really also want to just talk about how important I think it is for us to partner with each other. There's really power in partnership and partnership again between the research community, the lived experience community between, you know, clinicians, those in the front line and federal funders. And so I am really looking forward to the next year as we focus on that. Really grateful for our current partnerships. You know, it's been really a pleasure, a deal to work with you, to work with the, you know, other groups that we've worked with. as well as our, for example, our scientific advisors, our lived experience advisor. I just think there's so much power in all those partnerships. And so I hope that that continues. And I know that as we all work in different ways, but work together towards the goal of understanding misophonia, that we are really going to be able to come to some important understanding and and solutions for all of those who are impacted.

Unknown Speaker [59:40]: Yeah, no, I appreciate that. That's a great message. And I want to say, I mean, you know, the time I've known you, I mean, I know I'm so amazed that, you know, the MRF, I'm grateful that MRF is in great hands. I mean, you're just such a, obviously super smart, but calming kind of, and kind of stable and rational kind of voice and presence in the community. Which has kind of been like, you know, the community. When you go on Facebook, you just see how, you know, intense people are. And then obviously the community at large, you know, there's, you know, as you know, there's a history of like certain silos and egos and stuff. And it's just a great, it's great to have someone like you to kind of like, you know, kind of tend everything, tend a lot of this stuff and be so close to the research. So grateful to you. uh, the work that you've been doing. And yeah, I, I agree. I think more, um, collaboration, um, in the, in the future. And, um, yeah, I was interested in wanting to help out in, in new ideas. It sounds like you guys are, have a lot of ideas coming up. So excited to hear about them.

Mrf [60:51]: Oh, well, I really appreciate it. Um, you know, I, I, um, I also am just really excited to, to, you know, keep brainstorming together as we look, look to the future, um, and, and really make some real differences and impact together.

Unknown Speaker [61:08]: Cool. Well, thanks again, Lauren.

Mrf [61:11]: Oh, thank you. A deal. This is really a pleasure.

Unknown Speaker [61:14]: Thanks again, Lauren. Really appreciate the work you're doing on MRF to drive new research while also helping to build the community. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at hello at mississipponiapodcast.com or go to the website, mississipponiapodcast.com. instagram at mystifony podcast or facebook and on x it's mystifony show support the show by visiting patreon at patreon.com slash mystifony podcast the music as always is by moby and until next week wishing you peace and quiet

Unknown Speaker [62:14]: Thank you.