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Adeel [0:00]: crazy, it was with a product manager at like 23andMe. And so it was like everyone, know, it was like a big deal. Everyone wants to hear about 23andMe. And then I got so excited, I forgot to hit record. For the whole thing, and then she was so nice. She came back and we recorded it again. But yeah.
18337628 [0:11]: For the whole thing? Well, you know what? That only happens once when you learn from it.
Adeel [0:23]: Yes, Yeah, this time I learned. well, yeah, guess we can kind of get into it. mean, I'll just say Steve and Diane, welcome to the podcast. It's great to have you both here.
18337628 [0:39]: Thanks, it's great to be here. Yeah, thank you for having us.
Adeel [0:42]: Yeah, so yeah, like most of my conversations, I love to just kind of hear about roughly kind of where you're located and just maybe a little bit about what you do day to day.
18337628 [0:52]: So we are based in the Chicago suburbs, have been for pretty much all of our lives. And we are empty nesters. We became empty nesters a couple years ago when our youngest child went off to college. I've been a venture capital investor for 27 years or so. I co-founded a venture capital firm. And I'm kind of semi-retired these days. We're doing a lot of work together philanthropically, including the Missifonia Research Fund, which we'll talk about, obviously, the reason we're here. And I also decided to go back to school. I just turned 60 years old, and I'm going to be getting a master's degree. And so that's been reactivating parts of my brain that had atrophied a little bit.
Adeel [1:52]: That's amazing, well happy belated birthday on the big milestone. Great. Yeah. Well, it's great to have you both here. Yeah. I'd love to hear, obviously we're to get into misophonia, but you you've been doing a lot of things. You have a lot of things going on. How did you, how did misophonia kind of come across, cross paths with your, with your lives?
18337628 [2:18]: So misophonia came into our lives through our daughter. When she was young, she would, you know, hate the sound of my voice and Steve's chewing. And she would yell and scream and say, stop talking, stop chewing. And at first we couldn't figure out like, what's this? And like, what's going on here? And at that point in time, we were lucky enough to have a doctor who was working with Rachel and we mentioned it to him and he said that sounds like misophonia. He said I don't really know that much about it and I don't know how I can help you but that's what it sounds like. So we just you know went online and researched it just like you do with everything these days and you know she was sort of the classic misophonia case. That was about eight or nine years ago. Yeah, it was a while. Maybe even more.
Adeel [3:22]: Okay, and she's your youngest or, yeah, I think you have a number of kids, oldest, okay, gotcha, gotcha. And okay, yeah, you're right, classic. mean, parents around some kind of meal are often the first triggers. And that's great that your doctor at least knew what it was. Did you then take her somewhere else or I guess what?
18337628 [3:28]: She's our oldest.
Adeel [3:52]: How did you change your lives, anything, to accommodate or maybe try to get help?
18337628 [3:58]: Yeah, we were very lucky that the doctor knew what to call it. He didn't have anything he could do about it in his toolbox, but at least he knew what it was and what to call it. And we were lucky because we know, we learned subsequently that the awareness level, not only in the general population, but in... among the medical community. The awareness level was and still I think remains relatively low. So that was lucky. And sorry, what was the next part of your question?
Adeel [4:41]: yeah, no, that was, yeah, that was just kind of, know, what, how did your lives change? How did you accommodate and maybe what you did next? Yeah. Yeah.
18337628 [4:46]: did you, I'm sorry. Yes, and did we take her somewhere else? There wasn't really any place else to take her. I mean, it wasn't like there were, you know, doctors lined up, you know, that treat misophonia. And so we didn't really have anywhere else to take her. As we researched it and realized there wasn't. There really wasn't a treatment for it that had been approved and you know there wasn't there weren't too many options So we basically just we basically just live live with it and tried to you know tried to reduce I was very conscious of my chewing and and Diane was very conscious of When she spoke because it it's words that have s's and t's
Adeel [5:26]: Right.
18337628 [5:45]: in them, which is pretty much every other word. So it's kind of hard. And pretty much every plural word has an S in it. And by the way, her sister's name, our other daughter, is Alyssa. So every time we said her name, so it became quite challenging.
Adeel [5:47]: You're right. Yeah, mean, must have felt, I guess, did it feel for this to kind of like occur so suddenly and obviously drives a wedge sometimes between family members in a way.
18337628 [6:19]: Right. It can certainly do that. listen, after nine years or whatever it's been, we're still all dealing with it. in our case, and we realize this is not the case with many people in the community, but in our case, it's only Diane and myself who are Rachel's triggers. We certainly realize that they're the There are other varieties of misophonia where the triggers are general from any source. That can be a very isolating condition. thankfully in our case, Rachel doesn't have that. She's away at college. She's not triggered by other people. So she can have a normal existence where she can eat in the dining hall. And she can go to restaurants. And she can go to class without being triggered.
Adeel [6:56]: Mm-hmm.
18337628 [7:18]: we certainly realize that that's not the case for many people who suffered with misophonia.
Adeel [7:24]: So at some point, yeah.
18337628 [7:28]: No, I'm just saying, so, you know, on the flip side of that though, family dinners at our dinner table can be very challenging. It's hard to have a dinner table conversation. It's hard to do that kind of just normal thing that families do. And that's very challenging and very emotionally taxing and very difficult. We're, we, We are also lucky in that she's not triggered by on Zoom or FaceTime. So when she's away at school and we have a FaceTime with her, she's not being triggered by us during conversation. that's relieving. I also though, I find that aspect really interesting. You know, just as it relates to misophonia itself, that she is triggered in person, but not
Adeel [8:12]: This is really interesting.
18337628 [8:25]: triggered on FaceTime.
Adeel [8:28]: Yeah, that's really interesting. I'm almost the opposite. Something about the audio compression in FaceTime or WhatsApp, audio, kind of makes it worse. It almost accentuates some of those, smaller sounds that you can ignore. But yeah, you're right to your point, Yeah, I mean, there's kind of many, there's a spectrum and variations of Misophonia.
18337628 [8:44]: No, that's very interesting.
Adeel [8:58]: And so how did you, so at some point you both must've gotten connection with other people that maybe have misophonia or somehow, I'm curious kind of what led you to getting more involved, I guess, in the community.
18337628 [9:16]: I think part of it was we were looking for ways that we could help Rachel. And the more we kept looking, the fewer options we could find. And a couple of the things that we did try really didn't work for Rachel. so our thought was we should we should see what we can do to help since we're not able to find other options out there. And we also realized that this was a more prevalent condition than I think it first appeared. Because the awareness had been, and I think still is, relatively low among people, the more we talked about it, the more realized that
Adeel [10:07]: Mm-hmm.
18337628 [10:12]: many other people and or family members or people that they know suffer with this even if they didn't know what it was called. And so we realized that this was a relatively large problem that had very little research being done. And the more that we have gotten involved with misophonia and we talk to people about it, so often people will say, my God, I have that and I never knew it was a thing, or that sounds exactly like my sister. And so it's been really gratifying to bring some of that awareness to other people. But like Steve said, it's amazing to me how many people have it or know someone who has it and didn't know what it was.
Adeel [11:04]: Yeah, many people live in silence, no pun intended, with misophonia. And did you guys look for ways to kind of contribute with research? Since yeah, mean, especially eight, nine years ago, there was really not much happening. Kind of curious how you kind of came in connection with some of the research that's happening.
18337628 [11:07]: Thank Well... I think that we did it maybe a little bit in a little bit of a different way. wasn't that we... How should I put this? In the research that we did where we were trying to find some solutions, some therapies, some things that would help Rachel and realizing that there wasn't much out there and also realizing that there wasn't much research being done. was, that was really I think the no pun intended triggering moment for us to say, hey listen we we can do something about this. Diane and I have been very fortunate in our lives and in our careers, and we had already established a charitable family foundation that for several years prior had been giving resources to educational and cultural nonprofits. And we decided that in this moment, so about eight years ago or so now, that we are really needed in the Misophonia research field. And so we established the Misophonia Research Fund and redirected, refocused the majority of our philanthropic resources and time and effort onto Misophonia research.
Adeel [13:02]: Yeah, no, it's great. I remember first hearing about that and I was, it had to like, did a double take. I was like, wow, somebody is taking this seriously and putting like real resources behind it. was, it's kind of a shocking, but a refreshing moment. so, and so I think you, but you, I believe you both connected with the, the Milken Institute to kind of get this off the ground. Do you want to maybe talk a little bit about how that kind of came together?
18337628 [13:32]: So once we decided that we wanted to put some resources towards this area that we knew nothing about and how to establish an organization to work on misophonia, we knew that we needed assistance. And I don't even remember how we... came across the milk and do you remember that? Yeah, so I mean we already had and have a staff, a small staff for our family foundation and they knew how to vet grant requests in arts and culture and in educational organizations and that sort of thing. But funding medical research and scientific research is a whole different ballgame. When you don't, if you don't have
Adeel [14:13]: Hmm.
18337628 [14:23]: scientific expertise, medical expertise in grant making in that field. You're not qualified or prepared to vet research proposals. And we knew that. And so our foundation director also was very self-aware and said, listen, this is not something I can do, but I found this organization which helps philanthropists who want to do grant making in medical research fields, they're sort of a consulting firm. I mean, it's kind of a consulting firm within a big nonprofit, within the Milken Institute. And they had this whole group that helps philanthropists who want to do, who want to fund medical and scientific research. It helps them do that. And the first step that they did was to survey the field. What research is being done out there? Who are the thought leaders? Let's go talk to them. And they presented us with this report after they had done a ton of research on the research and laid out a roadmap for us. And that became the beginning of the Misophonia Research Foundation. And then we worked with them also then for several years in terms of getting it up and running. Right. We didn't sort of take that report and then go immediately hire a staff. We actually
Adeel [15:37]: fascinating.
18337628 [15:51]: continue to engage the Milken Institute's Center for Strategic Philanthropy to kind of be an outsourced administrator of the Misophonia Research Fund. And that model sort of was in place for the first five years or so of the existence of the MRF.
Adeel [16:01]: Hmm.
18337628 [16:12]: And then after that point, we felt that, were, it was up and running. We had executed on the first five years of the first strategic plan that they had put together. And at that point, we decided, you know what? This is something we really want to bring in-house. And that's when we went and found a spectacular executive director for the MRF, Lauren Hart Hargrove, who's a PhD in neuroscience and.
Adeel [16:12]: Gotcha.
18337628 [16:39]: and has been amazing and an amazing leader for the MRF and really took the baton from the Milken Institute and the work that they had done and has just been spectacular. What's she been with us now? this the end of her second year? End of her second year. And she's now built a team, two additional PhDs on the MRF team, not doing the research themselves, but they are. put in together our scientific advisory board and our peer review panels and they do all of the administration and communication with what is now, I don't know, 40 or 50 different researchers around the world at like 30 different universities. And it's international. It's interesting to me some of the misophonia work that is being done in other countries.
Adeel [17:37]: Yeah, in India and Amsterdam, all over the place. It really reflects the global nature of MISPHY. I've had people on the podcast from New Zealand to Uganda and everywhere in between. so it's great to see that. yeah, you're right. Lauren's been an amazing job. think it's Selena and Kylie are also on her staff. And I got to meet them at the...
18337628 [18:03]: Yes.
Adeel [18:07]: in Chicago as well. Yeah, it's...
18337628 [18:08]: Actually, they're not in Chicago. In full disclosure, this is a distributed virtual team.
Adeel [18:12]: okay. Right, I met them in Chicago, but yeah, you're right. They're kind of all, they kind of work from all over the place, normally. Amazing.
18337628 [18:24]: Yes. Lauren was Lauren was a pioneer in remote work. Yeah, actually, she came from her prior employer was Chicago based, which was just it happens to be. Yes, was right. But she wasn't located in Chicago. And that was just a coincidence. And but she she had been working remotely for them for, I don't know, 10 years. this is well before COVID made made.
Adeel [18:38]: Epilepsy I believe, right? Yeah. Mm-hmm.
18337628 [18:54]: common and fashionable. was used to that. yeah, we did a nationwide search for the executive director of MRF. didn't have to be a Chicago-based person. I'm glad that we said that because we never would have.
Adeel [18:57]: Yeah. Yeah, well, great choice. Great choice. Yeah. So yeah, so I like to jump around in these interviews, but going back, guess, to your daughter's, as this is all happening, as you're starting to learn more, I guess, what kind of coping methods and ways to deal with misophonia were you all trying and what was working, what wasn't, what was kind of your experience there?
18337628 [19:37]: that's actually a good question. I know that we tried headphones and Rachel did not like wearing the headphones. I kept the headphones in my car, especially when we were in a small space. and she just did not like wearing the headphones. We tried, music.
Adeel [19:55]: Mmm.
18337628 [20:06]: Like in the background. We also tried one of these, it's an exercise tool, I forgot what it's called, where you like squeeze it to develop your hand and your arm muscles because when she would be triggered, she would say she needed to release the sound. And so we would have her like try and squeeze this. exercise piece of equipment, which I don't even know exactly what it's called. I don't remember the name either. Yeah. And that I think tennis players use it a lot. And that didn't help. And then we would say to her, well, Rachel, would you like, you know, to eat dinner in another room? But she didn't want to do that. She didn't want to be isolated. So it really became very challenging because some of the options that were available. She didn't want to use that. She didn't want to be isolated from the family dinner table.
Adeel [21:15]: That's really fascinating. It just speaks to the range of experiences because most, I mean, would say most people, most people dealing with misophonia, young people just want to get away. So they want to isolate themselves. And on the flip side also, a lot of the parents aren't as understanding as you both are. So it's kind of interesting to see the different dynamics, but same experience.
18337628 [21:28]: Right. but believe me, Adele, there have been many times when we have not been understanding. And along those lines, I think it took us quite a while to really realize what was going on and how we needed to sort of change our understanding.
Adeel [22:07]: Yeah, yeah. was it, did your understanding kind of change from like doing research or was it like talking to your daughter and just kind of like, I don't know, just kind of going with the flow?
18337628 [22:20]: I would say that the more we've learned through the research that we fund and the people that we talk to in the field and the people who are in our position, families who are suffering with it and people themselves who are suffering with the disorder, that has increased our understanding and I think helped us cope better and react better than we did earlier on. is a... You know, when your child is in pain, the first thing that you want to do is talk with them to try and help ease the pain. But when it's your talking itself that is causing the pain, that is a very evil, tricky, difficult, catch-22 kind of situation and adds a whole layer of... of emotional. complexity to this disorder. also think with Rachel maturing, she has developed some of her own coping mechanisms. You know, in the beginning when she would be triggered, she was really, you know, fight or flight triggered aggressively. And as she's matured, she has found some of her own coping mechanisms. And that's, as we've learned, that's normal. We know people who are in their 50s who have misophonia. they are human beings develop coping mechanisms throughout their lives where when they're teenagers, there's many things they can't cope with that just occur normally in life. just developmentally, eventually they learn how to cope with stuff. Misophonia is... a thing that doesn't go away and yet the older that you get, you're better at coping with things and developing skills to help yourself. You're better at that in your 50s than you were in your teens.
Adeel [24:38]: Yeah, absolutely. And in some cases, feel like though it's people tend to, I guess, just mask better and maybe they're still kind of suffering. But I mean, I guess that applies to a lot of different conditions.
18337628 [24:50]: no question. No, I didn't mean, I hope I didn't imply that the suffering is less. The only thing I'm saying is that the coping is better. So the guys that I know in their 50s, I've observed them in meetings getting triggered. I know what their triggers are. One in particular, it's crunching of potato chips and the potato chip bags. And so...
Adeel [25:03]: yeah, yeah, yeah.
18337628 [25:17]: if it's a lunch meeting and there are people in there with potato chip bags, I've seen his face when he is triggered. If he was a teenager and he would have screamed at people or punched them in the arm or whatever, he's not a teenager anymore. So you can see it in his face that he's certainly being triggered, but he's able to sort of stifle his response and cope with it. But I am not at all saying that he's not getting triggered any less than he had.
Adeel [25:24]: You Yeah. Right. Right. Yeah. Yeah. that's interesting. So as, as your, yeah. So as you knew more about what it was in, and, I guess you're probably, more aware of it in, in your surroundings, in meetings and whatnot, did you start to, yeah, meet other folks maybe in philanthropy or just in, in your, in the venture world or the tech world that, that have misophonia, because it, it, is. It's kind of known, I don't know if it's been quantified, that a lot of engineers have misophonia. It seems to be big in these kinds of mathematical, engineering, scientific spaces, and probably also in venture in general. Yeah, I'm curious, did you bump into it more?
18337628 [26:36]: Not, I would actually not, I don't have any data to share that say, yes, in my field I've run into more people than I have in just in normal life and in friendships and in other contexts. know, it would be interesting, as we know, and I'm sure you've discussed in prior episodes and in your broad experience in the field and in the community, misophonia usually doesn't appear by itself. There's usually other conditions that coexist, that it's comorbid with. ADHD or anxiety or OCD or those kinds of conditions. People on the spectrum have a higher prevalence of it. it is...
Adeel [27:15]: Mm-hmm.
18337628 [27:33]: I wonder whether people who go into computer science and engineering, perhaps there's a correlation somehow with folks who are in those fields who also maybe have a higher prevalence of being on certain ends of the autism spectrum or people who tend to have more OCD, maybe they're better programmers because they're making sure that all the attention to detail, exactly.
Adeel [27:51]: Right. Attention to detail, yeah.
18337628 [28:03]: So I wouldn't, I have not, I haven't been conscious of that kind of correlation in my field that's any greater than in just our general relationships. We have found, as Diane said earlier, the more you talk about this and explain what misophonia is and people want to know, what, well you're... You've got this thing called the Misophonia Research Fund. What's misophonia? And the more you talk about it, as Diane said, it's more likely than not that they will say, you know what? My sister, my sister has had that kind of thing forever and we never knew it was a thing. But it would be interesting to see if there is any correlation between people who have misophonia and their career choices.
Adeel [28:44]: Yeah.
18337628 [29:00]: And maybe that makes sense because they're choosing careers in areas that they hopefully won't be triggered. And they won't have to talk to anybody. Right, seriously. mean, you know, the documentary film Quiet, Please followed a number of people who have misophonia. And one of the young women... Who was a race car driver. Well, she wasn't a driver. She was like in the pits or whatever because the noise of the engines of the race cars drowned out all the triggers.
Adeel [29:17]: Mm-hmm. Yeah. Yeah, no, absolutely. And I've had people come on the podcast who chose to go into janitorial careers where they just have to work at night when no one's at the office and they just do their own thing. yeah, and that particular person I'm thinking about, yeah, he's in his 70s now. Yeah, it's just amazing some of the stories of people who had misophonia long before the eight or 90 years ago going back.
18337628 [29:39]: Yeah.
Adeel [30:00]: You know, decades. It's been a challenge. yeah. Well, yeah, well before even many of these comorbid conditions were even named. So, yeah, I guess, you know, as you're starting to see some of the research come in, I'd love to hear kind of your takes on, you know, what are some of the most interesting kind of directions or.
18337628 [30:01]: well before it was named, well before anybody thought this might be full condition. Yeah, that too. Exactly.
Adeel [30:31]: papers that maybe you've seen kind of come across your desk.
18337628 [30:36]: So I'll start certainly with the technology that exists, functional MRI for example, and the opportunity for really, really smart people around the world to be able to have the resources and the chance to really do very important work has led to some interesting stuff. they have identified areas of the brain that light up when somebody with misophonia is triggered. And so that's a really important step on the road to finding what causes this and what treatments might be able to work on it. We've seen early success in research using transcranomagnetic therapy. So from outside the brain, not implanting magnets in the brain, but using magnetic impulses from outside the skull, focused on certain areas, those have shown some promise in reducing triggers. So that's been some exciting and interesting stuff. Early on, one of our early cycles of funding went to a, I think he's at UC Santa Cruz, a researcher who studied kind of how the visual component played in triggering. So what he did was, and he worked with some people at YouTube, he took triggering noises, actual trigger noises, and spliced them onto pleasant non-triggering videos. So these were the actual trigger noises, but instead of being paired with, left with their original visual cues, they were put on a neutral or positive visual cue. And what was interesting was that it triggered people less. That was the one, that study is what I was thinking about when you had mentioned before, chewing potato chips or the potato chip bag. He would pair that noise with- Like a puppy walking puppies walking on a pile of crunchy leaves. And so instead of it being
Adeel [32:47]: you
18337628 [33:00]: potato chips, it's a puppy walking on leaves to the same sound and how their response was much less when it was a pleasant video or picture that you're looking at rather than what the actual trigger sound sounded like.
Adeel [33:22]: Yeah, I think that's Professor Devidenko in Santa Cruz, believe. Yeah. Yeah. Yeah. that wasn't.
18337628 [33:24]: Yeah, exactly. Yeah. And then some non-MRF funded research, but some things we've been exposed to also, I think, show some promise. And that is, I'm aware of at least one company that's working on AI technology, specifically focused on audio and on the ability of AI to pick out certain audio and either filter it away or leave only that and nothing else. of course, my mind, and they're looking at it for different applications right now, but my mind goes to, how could this help people who suffer from misophonia? Could, for example, Rachel have some sort of a device, a hearing aid or whatever, that she could wear when she's having dinner with us, it would filter out the just the sound of my chewing and the triggering noises from our voices while she could still sit and have dinner with us and have a conversation with us in real time. So I think that that's exciting too. Instead of completely using noise canceling headphones and not hearing anything and not participating in conversation or anything, that to use AI technology to filter out the triggers and leave everything else.
Adeel [34:54]: Right, yeah, it'd interesting to see where the state of that is, because noise canceling helps, but it doesn't take everything out completely. I'm just kind of curious how they'd be able to pick out transient sounds with a low latency, yeah.
18337628 [35:04]: And it's, and as smart as noise cancelling headphones are, they're dumb relative to AI and where I can do a customizable programmable AI, call it a hearing aid for lack of a better term, that I can say these noises I want to be filtered out. I don't want to hear any of this, or I only want to hear this person's voice and not anything else. And these tools exist. I'm not talking about with respect to Misophonia yet, but the technology exists to be able to have an AI enabled audio technology where I can pick out specific sounds, specific frequencies, a specific person's voice and filter them in or filter them out. That's just going to continue to get, we're in the early innings there. That'll continue to get better and better. And I envisioned that. as a better noise cancellation kind of technology.
Adeel [36:12]: Yeah, selective sound cancellation. Yeah, I'd be curious to see what the market reaction would be. Because once you take them off, then are you going to feel even worse? does it kind of help you in general because it's lowering your stress? Yeah, I'd be curious to see how that affects the person in their entire life.
18337628 [36:33]: That's a great question and I think as with any technology or any medical solution, it may work better for some people and not others. And it may have side effects or unanticipated effects. Those are all going to have to be looked at and studied. But the promise is out there. There's interesting stuff in the pipeline is my point. And one of the most impactful things about the Misphonia Research Fund symposium, symposia, I think is the correct plural, that we've had over the years and the interactions that we've had with so many people who suffer from Misphonia and their family members.
Adeel [37:07]: Mm-hmm. Right?
18337628 [37:32]: is that just the fact that there's research being done is this source of hope. People know that, okay, there's not a cure coming tomorrow for this thing. It's gonna take a while. There's a lot of work, a lot of money that needs to be invested, a lot of time that's gonna take. But the fact that they know somebody's doing research and there's a lot of really smart people around the world working on this problem.
Adeel [37:42]: Mm-hmm.
18337628 [38:01]: That source of hope is really important.
Adeel [38:07]: Right. Yeah, I'm curious what you both think about, guess, especially since you both are involved in private funding and also this philanthropic public funding and research. Sometimes research is expensive, it takes a long time, it can feel kind of incremental. And on the other hand, you're both in you get to see these technologies that move very quickly and people are willing to just kind of like buck trends and, and, um, you know, have that kind of entrepreneurial spirit. I'm curious, kind of, do you see any ways we can kind of like, and I think Zach at the conference was trying to, trying to, um, bring this kind of, uh, maybe a culture shift that kind of think a little bit more entrepreneurially in, in, the scientific research community. Do you have any, I don't know, do you have any kind of thoughts on that and how we can maybe. accelerate or democratize more research and thinking around misophonia.
18337628 [39:09]: Well, that's a really good question. First, I feel I need to clarify that my work in venture capital is completely separate from our philanthropic work in Missifonia. That all of the grant making that we have done in Missifonia are philanthropic charitable grants. These are not investments that we're looking to profit. Those are two completely separate parts of my life.
Adeel [39:34]: Right, right.
18337628 [39:38]: The venture capital investments I do are in software and in online marketplaces and those kinds of things that have nothing to do with Missifonia. All of our Missifonia work is charitable and philanthropic. I want to make that very clear. Indeed, no, and I'm glad that you did because, and we've had these conversations with Lauren and the entire MRF team.
Adeel [39:52]: Right, right, yes. No, clarification. I meant, I'm just trying to compare the cultures and not so, yeah.
18337628 [40:06]: We want them to have this entrepreneurial mindset, this mindset that technology startups have that, okay, there's a big problem out there, and we think that we have or can develop the solution to that problem. And let's put a lot of smart people together and let's throw the resources at it and really, in an organized way, go and tackle this problem. And let's not be bogged down in bureaucratic kinds of of complexities and methods and those kinds. want, I want, we want our team to think entrepreneurially and to attack these problems in that way with that same mindset that a startup in the technology space does. So that's how I would respond to that.
Adeel [41:00]: Yeah, yeah, yeah, no, I couldn't agree more. And yeah, I think you guys put the right people in place to kind of make that happen in my conversations. Yeah.
18337628 [41:07]: And one of the other things, excuse me, one of the other things I was thinking about as Steve was saying that is the amount of time that it takes, you're, you know, whether you're a venture capitalists trying to start something new or you're a scientific researcher trying to help find cures. You know, we wanted something yesterday. but we also understand that it takes time. Yeah. We had a little book club with the MRF team a couple of months ago. The book, Abundance, was something that we had read, and there's a chapter in Abundance that talks about the National Institutes of Health. And this is, again, is before this current administration, which I won't comment on. And by not commenting on it, by saying that, I've made a comment on it. But prior to this administration, the NIH, over the last several decades, so decades ago, used to do a lot of sort of moonshot kinds of funding on research that may have, it had a greater likelihood of going nowhere than it did finding something important.
Adeel [42:09]: You
18337628 [42:31]: And yet if it found something important, it would be really important and impactful. And that the trend has been away from that. The trend has been more towards incremental improvements, incremental research. And also the trend was towards more paperwork. And the term that Ezra Klein used in the book was grantsmanship, researchers were spending 40 % of their time, are spending 40 % of their time on writing grants and writing the reports on what the research has accomplished so far and sending those reports back to the grant makers. those people should be working 99 % of their time on the research and 1 % of the time on the paperwork. these are important elements in sort of how and why medical research and scientific research has kind of not had the same kind of breakthroughs that we used to have. And we want our team and also the researchers who we fund to be working on moonshot kinds of breakthroughs. Now, that's not to say that basic science is not important because it very much is. And so we always will have a space for the basic research, basic science, the incremental kinds of things that help all the rest of the research move forward. But we feel it's very important to have this mindset of moonshot kinds of breakthroughs.
Adeel [44:14]: Yeah, no, I agree. think I'm hoping not to sound like an AI maximalist, although I am kind of, I'm hoping that, the 40 % spent on grant writing and administrative stuff can be greatly reduced to kind of, and even the, you know, the, the, the writing afterwards or the analyzing data, I think could be, you know, shortened a lot by AI and perhaps multiple studies can be done in parallel. you know, to help multiply things. And yeah, you're right. This is kind of unfortunate. Another thing I've, I don't know, I've had the, I don't know if there's a way to quantify it, but I almost feel like, you know, it's obviously, especially with this administration, it's harder to get funding. But I hope it, I hope it doesn't, I don't know, I get the feeling that sometimes people get a little bit precious about their ideas because there, you know, so many people are trying to,
18337628 [44:44]: Agreed.
Adeel [45:12]: get funding from a smaller and smaller pool. I'm hoping that we can maintain the sort of openness and interest in new and wild ideas and not get too focused on me and how can I get funding?
18337628 [45:26]: Well, indeed, and from the very beginning, Diane and I have made it very clear, and in fact mandated it as part of our grants, that all of our grantees have to share their data, they have to be open with their data. We want them to be collaborative with each other. There are more powerful tools all the time in being able to crunch and analyze data and look at look at trends and correlations and causations and you know it's a small field. Misfonia is still, even though it's grown significantly, it's still small and so every study, every data point is important and we don't want them siloing that and that's been a mandate from the very beginning. And the researchers comment on how great it is to get other people's perspectives and that they can share their research and they can talk about it.
Adeel [46:30]: you Right. Yeah, and I love that a lot of papers, I mean, this is not just for the papers funded by MRF, but the data availability notes where you can actually go and download data. I've done that for a few papers where I'm like, hmm, I don't know if I agree or if I fully understand what's going on, but I can dump the data into ChatGPT and have it do some processing and give me other more insights or confirm what the paper had said. Yeah, I'd love to, I don't know, maybe I'll write or speak a little bit about how that can be done to kind of like help democratize exploration of the same data that researchers are doing.
18337628 [47:20]: Great.
Adeel [47:22]: So, well, I guess, again, we're already almost an hour in. I'm curious. Yeah, so, I mean, you asked me at the beginning, like, how long have been doing the podcast? Six years. You've been doing this for about as long, and there's, you a new cycle every year. I guess, where do you, and you said that there was like a roadmap that you guys had laid out at the beginning of your journey here. I'm curious, what kind of, what do you see in the next? one to two or three years in your vision for the MRF.
18337628 [47:58]: Well, you know, we've just scratched the surface and it's really important to us that this field grows, that there are more researchers who choose to work in Misophonia, that there are more institutions, more universities who commit to working on Misophonia. And so part of our roadmap has to do with expanding the field. and encouraging, for example, young researchers who are just beginning to decide what field to study, we have programs for young researchers where we can fund their work and encourage them to come into the field. That, think, is a really important part of building the field. Another thing that we're beginning to work on and put funding towards is to look at how best to use AI and the tools that are developed within artificial intelligence, how best to deploy those in this field. That, think, is going to be a very important accelerant for this work. And so those are two of the important near-term initiatives of the MRF, the development of more
Adeel [49:17]: Mm-hmm.
18337628 [49:28]: young researchers to choose this field and do work in this field and the development of AI as very powerful tool.
Adeel [50:12]: potential funders as well.
18337628 [50:14]: Yes, no question. We certainly, we don't... We don't have enough money, to put it bluntly, to...
Adeel [50:25]: And we wouldn't want to use just the Miller's.
18337628 [50:27]: Thank you. you for saying that. To fund, I mean, medical research is obviously expensive. to date, we have been able to fund much of the good research proposals that are out there. But with the field growing, there's going to come a point where that's not possible. And so there have already been families that we are working with. The Misophonia Research Fund is not a public 501C3. charity, we cannot accept public contributions. And yet we have been collaborating with other philanthropists who are interested in this field and have helped us in funding. The NIH, did you want to talk about Well, that was just what I was thinking about, is that there's private funding and public funding. We aren't really aware of any public funding that is being done on Misophonia. Yet. And ideally, organizations like the NIH would be great if they could fund misophonia research. Sort of that whole funding area is changing right now. But yeah, I was trying to be diplomatic.
Adeel [51:43]: really?
18337628 [51:48]: So it would be great. Yeah, right, right, right. Yeah, it would be great if we could get some major public funding organizations behind this, Ifonia. And so there is work being done to sort of prepare the, to lay the groundwork for that, for eventual.
Adeel [51:50]: Maybe this is where we can throw those F bombs that you were talking about earlier.
18337628 [52:13]: back when the NIH regains its sanity someday, hopefully sooner rather than later, that the groundwork is being laid by our team in collaboration with others in the field so that at some point in the future, hopefully sooner rather than later, Missifonia will be an area that is getting significant government research funding.
Adeel [52:42]: That's really interesting. there's a couple of things that I'm, pardon me for being ignorant. Yeah. A couple of things I didn't realize is that I guess, the NIH has never funded misophonia research before. It cares where the money, um, well, I guess what is the landscape of, um, maybe that should have been one of my first questions, but I guess, well, yeah, what is the real landscape for misophonia? I didn't even realize that, that, um, MRF was not even a 501 theory. just assumed that everything is. Yeah. Family foundation. Yeah.
18337628 [52:51]: Well. Well. No, it's a private foundation that it would not be legal for us to accept public donations. But as it relates to organizations such as the NIH, Misophonia, up until now, never had an ICD code, so physicians couldn't get paid for it, so to speak. It wasn't an official diagnosis. It wasn't an official diagnosis.
Adeel [53:14]: Gotcha.
18337628 [53:36]: So, you know, there are some folks that we've been working with and I'm not sure if they have accomplished that yet or not, are getting an ICD code. Yeah, I don't think it's been accomplished yet, but it's a lot closer than it was. And so first it needs an, quote, official diagnosis code before organizations like the NIH would even look at it. And the more, you know, some of the studies that we have funded have included prevalence numbers. And so, and those have varied and I think more work needs to be done. But misophonia is not a rarer condition. And I think that the combination of, as Diane said, when it becomes an officially diagnosable disorder, that combined with the prevalence numbers that show a significant
Adeel [54:02]: Yeah, okay.
18337628 [54:31]: a number of Americans suffering from it, those things plus some advocacy work plus the fourth thing of the, again, the administration becoming more sane, would be helpful towards achieving NIH funding.
Adeel [54:56]: Right, yeah, and I hope when Right That Ascenity does return, the work that you guys have done and what you've built and the path that you've kind of laid ahead can be kind of a model for perhaps how a lot of this can be done in the future. yeah, we are in the early innings. Yeah, so I guess we're close to about an hour. This has been an amazing conversation so far and I think a lot of people are gonna be excited to kind of get this kind of level of depth into your backgrounds and kind of how you've gotten into this space. Anything else you'd like to share about Misophonia or your lives, kind of your hopes and your vision for the future?
18337628 [55:48]: I think what I would say is that we know the pain that misophonia causes. And it certainly causes pain to the person who suffers it. That's the most pain. That and it also causes significant pain within families and among the loved ones of people who suffer from it. And we've experienced that for now many years. There is nothing that we do in our lives that's more important than the work with the Misophonia Research Fund. We think, we know that this work will eventually pay off to reduce the suffering that Misophonia causes. And that's our guide star for the MRF. And it's not just about our daughter Rachel. There's so many thousands of people who suffer from Misophonia. And some of them have it, as we talked about earlier, a lot worse than we do. Some of them have it, have the variety of misophonia where they're triggered by everybody, everywhere. And the work that we're funding, we hope and pray that it's going to be extremely beneficial for many, many thousands of people. I agree, wholeheartedly.
Adeel [57:19]: Yeah, no, well said. uh, um, yeah, on behalf of everyone in the community, mean, really appreciate, uh, you know, you both stepping up, uh, and taking this cause, uh, cause I mean, if it really hadn't been for you to still be in the dark ages, living in silence again, no pun intended. Um, and so, yeah, I really, really appreciate what you've done and, and, and your commitment to continuing this year after year, it wasn't just like a, you know, one time, you know, drop some money and go away. And so you've built a real, you know, an organization that's really built for the future. So yeah, that's inspiring to see.
18337628 [57:57]: Well, nothing happens until somebody has an idea and starts something. And we felt that we were called to this work and we are seeing it through. And hopefully for everybody's sake, the solutions will come sooner rather than later and we're doing everything we can to continue to provide that hope and continue to... provide the real resources and leadership to make that happen.
Adeel [58:30]: Well, again, Diane, Steve, this has been a pleasure and honor. Yeah, thanks. Thanks for coming on the Missifoni podcast.
18337628 [58:37]: Thank you for inviting us. Yeah, and thank you for the work that you do in this field and you've been doing for so many years. think it provides a tremendous service to the community. So thank you, Adeel.
Adeel [58:51]: Awesome, and cut, and that's kinda how I know where to.