Building The Noise with Josh Newby: EPISODE 025

SPEAKER_01 0:00

My wife ended up crazy enough getting diagnosed with early stage breast cancer after we found out we were pregnant with our second daughter. And so interestingly enough, with with my wife, um the the December before um she was to have um our second our second daughter was born in January. And so that December at San Antonio, the the data was read out um around um Lily's CDK46 adomic cycle that success an early stage. So she was able to, you know, have surgery after the baby was born, have radiation, and then start on that course of that drug. And it's you know, yesterday she just, you know, you know, this many years out, got her, you know, she gets what's called uh minim residual disease testing every three months, and it was negative, right? And I don't know that it would have been if it wouldn't have been for that drug.

SPEAKER_02 0:51

Welcome to the Building the Noise Podcast. Ladies and gentlemen, welcome to the Building the Noise Podcast. I'm Matt Teresco, and today we're joined by Josh Newby, founder and executive director of Teresa's Research Foundation and the co-chair of the Metastatic Breast Cancer Alliance. Josh works at the intersection of patient advocacy, oncology, and breast cancer research, helping unite advocates, oncologists, and scientists around a shared goal, accelerating progress for people living with metastatic breast cancer. He co-founded Teresa's Research with his mother, Teresa Newby Harple, and has carried that mission forward through research funding, collaboration, clinical trial support, patient resources, and access to care work. With more than a decade connected to the Lester and Sue Smith Breast Center at Baylor College of Medicine, Josh brings both personal commitment and deep advocacy leadership to this conversation. Josh, welcome to Building the Noise. It's an absolute pleasure. Always love having our conversations. Why don't we start with what you do and why you do it at Teresa's Research?

SPEAKER_01 1:59

Ah, sure. I mean, well, you know, with your introduction, as you um uh were so kind to mention my mother, which anytime I can, you know, shout that name, it's it's a great thing. Um, you know, um as she passed away in 2013, and here we are in halfway through 2020, more than halfway through 2026. Yeah. Um, you know, the organization is still here and I'm still working in this space, you know. Um and that's you know, her, you know, at the time in 2013, there was um two organizations solely dedicated to metastatic breast cancer. Umledge, one of those isn't in operation anymore, the other one is metavir, which is a great group. And um my mom's thought was, you know, what what if an organization existed that wasn't of patients? Because those two organizations were for founded by patients. Um, and so that was her thought. And and um yeah, so it just kind of took off. And you know, similar to your story, you know, the the high games that exist out there in the world, um, you know, we we um got the approval to start the organization and uh went went to uh her oncologist's office and said, who who works on metastatic breast games? So this is in St. Louis at the time. And they just there happened to be a researcher by the name of Dr. Matt Ellis there. And you know, within a week I was, you know, less than a month, probably a week. It's it seemed like a day or two. We were having lunch. Wow, and um just really hit it off with him. And um, you know, to fast track, you know. Unfortunately, later that year, my mom um succumbed to her her disease and um you know, then trying to figure out how I fit into that space. Uh initially we had some good success in fundraising, but with her passing, fundraising became very personal. So I was just kind of trying to figure out how I can still be in that space, but not you know, you know, you know, especially at the time, right? Because you have to realize in 2014 people did not know what metastatic breast cancer was or metastasis or metastatic cancer. And yeah, and so you know, when we try to have that conversation with people in the public at that time, it was it didn't necessarily always go well. And as someone that just lost their mother, you know, it wasn't great. You know, I I was fortunate that I had to spend a lot of time with her. Um kind of similar to you. I have a you know interest in sports and played soccer even in into my 20s after college um with buddies and was having to sit at the bar one night. I found out one of my friends there who I played with it, his mom also had metastatic. And she had unfortunately passed away about a year and a half before my mom did. And so um I remember you know, after her um memorial service and everything, I sat with him and he was just like, you know, if you can do it, take the time off and spend with your mom because you know you're never gonna get that time back. And yeah, that still drives me to this day because I got that time with her, and but at the same time, I don't want other people to lose that time, right? I was liking my mom having she was really young, um, so I got 30 years with her. That's not the case for a lot of people with advanced cancer, right? They they have things that they they lose and they grow up without parents, and I'm of course now dealing with a bit of a situation and that you know I now have my own children that never get to know their um their grandma, and uh they do know a lot about her, and and that's been a kind of a challenge. Like one time I remember walking my now second grader to kindergarten and and she's like, Well, I miss grandma more because I never even got to meet her, you know. Oh man, you know, so it so that's the kind of stuff that like drives me. Um yeah, but but it it just was luck, you know, and that so this doctor Ellis um at Wash U, they had um so there's the San Antonio breast cancer symposium.

SPEAKER_02 5:31

And um yeah, big one of the if not the biggest breast cancer uh conference each year, right?

SPEAKER_01 5:37

Absolutely, and and so uh institutions at the time would do kind of best of, you know, um at their institutions. And so he did one at Wash U at the time, and at you know, there wasn't a medical conference for for metastatic breast cancer in the United States. There's um uh there was the um ABC ABC um meeting in Portugal that had had started a few years before, but um, you know, that was a consensus conference and it was based in Europe, and so we thought, well, let's start a medical conference, and so that's what we did. And uh, of course, when we started that, um, things with academic institutions, um, people move, right? You know, they have to move in order to advance the science forward. And so yeah, he ended up getting recruited to Baylor College of Medicine in Texas while we're trying to plan our first meeting. And so, interestingly enough, the first conference was actually hosted in Kansas City uh with a researcher there by the name of Dan Welch, um, who had um founded um an important society that's still in existence today called the Metassas Research Society. So, I mean, I've just been so blessed to like just get come across these different people. And and for example, I got introduced to him through MetaVidors Foundry, right? So, you know, there was this real desire to collaborate even in those early early stages and help people. Uh, and so I'm fully grateful for that. But um, yeah, I mean, basically ended up um doing the first meeting and went well, and then um Matthew felt bad, I guess, and he couldn't come. So he said, come down to Houston, you know, and and see me because he he was starting his first week there. I really lucked out again in that um, as I mentioned with the San Antonio meeting. Well, that was founded by um some sort of people that ended up moving to Baylor, and so they were very familiar with advocates. So they had worked with a Alamo Breast Cancer Foundation, and there was advocates that worked in San Antonio. It's really one of the first of its kind of um thing to do that. So they were very comfortable with me being there at the faculty and they were very welcoming. And so um, long story short, I left there with a job. So um I uh you know, I think they were surprised that I would take so little money, but I had you know spent a lot of my savings and everything, you know, taking the time off to be with my mom and everything that you know, um, so it was it was good timing. I had um tried to live in Florida many a times and it wasn't uh it wasn't meant to be. And so now uh fast track to 2026. I'm in Texas, I met my wife, uh, we've got two kids. Um, we did the conference for 10 years. Um and last thing on that is just like my wife ended up crazing up getting diagnosed with early stage breast cancer um after we found out we were pregnant with our second daughter, and so that was pretty crazy. Um and she ended up um she's doing great now, um, knock on wood, and she's getting ready to start her own veterin practice here in just a few weeks.

SPEAKER_02 8:22

That's fantastic.

SPEAKER_01 8:23

And you know, but I was able to, you know, um learn a lot going through that process with her as well, right? It was very difficult for mom because I had worked in this space, and so I think that's also what you know, as I you would reach out to me about your surveys and things like that. I I I became more engaged after that point because you know, you were working on this intersection of that of that space, and I was seeing like I was having a difficult time, difficult time navigating that as someone that worked in the space and talking also to other people working in academia who had loved ones going through it, right? Having a hard time. Start to get very upset because you think, wow, I work in this space and I'm knowledgeable about it. If you're not familiar with it, you know, it can become very upsetting. So you have to kind of take a step back and think about it and yeah.

SPEAKER_02 9:13

I can I can only imagine um watching or how helpless it must have felt though, too, to know that you've been in it, you've been, you know, listening to the cutting-edge science and listening to these doctors for years talk about what's coming, but at the same time, your your wife gets diagnosed, you want to fix everything as a husband. Um and you know, you're focused in metastatic, but your wife's got early stage. How did that how did that come around for you? Where was your realization of where you could play a part in that?

SPEAKER_01 9:50

Yeah, absolutely. So with my job at Baylor, what what was really helpful in that situation was that you learned that kind of all these things are connected, right? And so, though my focus has always been metastatic breast cancer, by doing the work I was doing at Baylor and working with the different researchers, you start to learn that, like, hey, like you need to pay attention to what's going on around you because you can learn a lot from different things, right? So, like I ran a seminar series on breast disease, but we bring people in from lung and melanoma and other types of cancer because you know they're you're learning a lot, right? I mean, and now look, I mean, you know, we've in a lot of ways breast cancer has gotten leapfrogged by things like some of the discoveries that we've done have happening in lung cancer and melanoma, and that helps them push forward things in breast cancer. And oddly enough, what's happened is um it's it's really interesting that you mentioned that because I have worked a lot in my time on CDK 4-6 inhibitors, right? You know, trying to help get you know, that's something that didn't exist when my mom was alive, right? Like, you know, there were you know a handful of drugs when my mom was a lot of times people were like, oh, did your mom miss something or whatever? I'm like, no, like if you like I just came back from ASCO in June, and it doesn't even fit on one just in her subtype, which my mom was ER positive. It it it it does not even fit on on a page on a slot, yes, the amount of different treatments. And so you can imagine there's a patient or a provider trying to like navigate that.

SPEAKER_02 11:13

Um and all of the different types, right? Like so you would reference ER positive, HER2, and and all of these uh acronyms that come with breast cancer as well.

SPEAKER_01 11:24

Yeah, so it's it's nuts. And so what happened is is that as these drugs get approved, so then in the companies, what happens is they what a lot of times people don't realize is like when they when they get that drug approved, they go back and do all kinds of studies to see what other types of cancer patients it could help, right? So, like, I mean, a good example is um, you know, the the different uh you know uh uh GLP1s, right? Like that was not originally for weight loss, right? It was for diabetes and in other health, right? So like they don't a lot of times it's not something that we talk about in the public eye as much, but sure they were going back to do these studies in an early stage. And so, interestingly enough, with with my wife, um the the December before um she was to have um our second our second daughter was born in January, and so that December at San Antonio, the the data was read out um around um Lily's CDK46 adhomocyclo, the success in early stage. So she was able to, you know, have surgery after the baby was born, have radiation, and then start on that course of that drug. And it's you know, yesterday she just you know, you know, this many years out got her, you know, she gets what's called uh minim minimal residual disease testing every three months, and it was negative, right? And I don't know that it would have been for that that drug, you know what I mean?

SPEAKER_02 12:49

Sure, you know.

SPEAKER_01 12:50

Um, and then the other part of that kind of connected me to the early stages that I'm I'm a bracket too carrier, um, and so was my mother. And so, you know, sure it's been you know, could have had had my eye on that too. Um, and I think as you know, with what you do, right? Like, I mean, yeah, you just it is um, you know, it's addicting to want to help people, right? I mean, oh yeah, it's it's an addiction. And so for me, like if I can take anything I've learned in metastatic breast cancer and help anyone, whether it's cancer, diabetes, any kind of health ailment, knee, whatever, yeah, you know, you you just don't want to waste the knowledge knowledge I've gained, right? You know, yeah.

SPEAKER_02 13:27

Um you can't help but answer the phone call and at any point in that in your day or night, right? To help.

SPEAKER_01 13:34

Oh, exactly. And and and also too, like the pe other people that are so willing to help. I mean, the amount of people like with my wife that helps, I mean, is such a blessing, things that I was able to have access to and and and done because of you know, um, you know, relationships I have and the willingness of people to make phone calls and you know things like that. Um very fortunate.

SPEAKER_02 13:56

You talk about partnership. Tell us a little bit about the metastatic breast cancer alliance.

SPEAKER_01 14:01

Yeah, so again, it's as I mentioned, about these things that happen in life that are like the um just happen. Uh I mean, at some point they kind of start to not become black, right? Like, I mean here, right? It's like definitely like higher power, and as I've yeah, we're gonna go back to church this year, and I think regardless of you know whether you're Christian, Muslim, Jewish, uh, Buddhist, Hindu, I just haven't some kind of belief system is is so important. And it it you know, I mean I start to say, so you it just becomes at a point where it's like, okay, it's not just coincidence. And so what happened was as I mentioned when we started our organization, a lot of the breast cancer nonprofits at the time were really not focused a whole lot on metastatic, right? I mean, there was a lot of need back then around early detection still, and um, and so there there was this um desire from some of those groups to to build a coalition um to create more awareness about metastatic breast cancer. And so they they convened a study in in 2013, 2014. So again, just lightning in a bottle um that this all happened. I wasn't involved in the initial document, but just so happened that at the um the San Antonio Breast Cancer Symposium in 20, I believe it was in 2024, they they hosted a meeting um and invited me in. Um, you know, it was early days. And um, the woman who's now unfortunately deceased, Shirley Mertz, who's um just uh very near and dear to my heart. And and you may know um another gentleman uh by the name of Mark Herlbert. Um so he's so Mark is uh now I believe working in the diabetes space, but he's worked in melanoma and breast cancer for many years, and just an amazing human and taught me so much. Um and so I they were looking for people to fill these committees, right? And I said, Well yeah, can I apply? I mean, we're a small little organization, and I'm I'm kind of you know, just doing the conference and working at this this this cancer institute. Like, sure, apply. Well, no one else applied really, and so to be on this executive committee with all these just amazing people from um Living Beyond Breast Cancer, breast cancer.org, and come like the biggest breast cancer organizations in force, yeah, and and just to learn so much from these brilliant people that really paved the way for people like you and I in this space, um especially in breast cancer advocacy. And so it was just an education, right? I mean, I just got to learn and and be a part of it, and and it was extremely successful, right? They used that document, and for the first five years, it was hugely successful um in getting more awareness for metastatic breast cancer, right? And so um, yeah, so I was a part of that, and then um after um you know some time there, I I was I you know removed myself from that and served with the Global Alliance for a year, and then with having my first daughter, I can no longer wear that many hats. So um I pulled away for for many years, but then um last year with all the things of the government, I left my job at Baylor after 10 plus years um to really focus on the foundation. And with some of the outcomes that we've kind of come on to, um, you know, it I felt it was important to re-engage with the alliance and and the the leadership that was in there was a good fit for me. And and so um, yes, now I've been doing that. So, you know, making sure I have like three or four things going on at all times, right? That's what we want to do.

SPEAKER_00 17:25

We don't really know if that's right or anything other than that.

SPEAKER_02 17:28

Nope. Nope. And and what I uh a question I'd love to ask folks like yourself who have young kids is how do you describe to your children how or how would your children explain what you do for a living?

SPEAKER_01 17:40

Ah it's funny that you asked that. So um uh I'll have to send you the picture, but so last week was my daughter's first first day of second grade, and um so it's always a competition between my wife and I, because she's a veterinarian. And so for her first couple years, you know, it's like I want to be a vet like mom. But this year, this year, it was boss of the of Teresa's. So that's what she wants to be.

SPEAKER_02 18:04

She wants to be boss.

SPEAKER_01 18:06

Well, you already are my boss, you know.

SPEAKER_02 18:08

That's right. Um that's right. Daughters have a special, special role in the family.

SPEAKER_01 18:13

Yeah, yeah. So yeah, I mean, they know that it's um, they know that it's you know, they don't, you know, we were lucky enough that uh, you know, with my wife's diagnosis that that you know, my one daughter hadn't been born, and and Eleanor was was only two, so you know, we didn't have to get into a whole lot of that. Um, but with with the foundation, you know, they know that it helps sick people, they know that it was Grandma Teresa's thing, so they kind of know that they're gonna work.

SPEAKER_02 18:40

I will say you are kind of up against it with a veterinarian in the family.

SPEAKER_01 18:44

You know, yeah, it's really hard. I mean, it's really tough. So, and of course, my younger daughter picked veterinarian, right?

SPEAKER_02 18:51

You know, of course. So, um yeah, but um back to school nights will be interesting for the next couple of years, I'm sure.

SPEAKER_00 18:58

It was, but I think everyone really got a kick out of the whole, you know, boss of the fountain. It's like you're already possible.

SPEAKER_02 19:06

I I know it. Having two daughters myself, I know it all too well. Um as you as we reflect on the work that you're doing at Teresa's research, you know, I think that in in the industry, uh, folks hear patient advocacy organization and automatically think, you know, programs for support, which is unbelievable. But tell us a little bit more about where your organization is niched and its focus in this research component and why so important. As you referenced, it seems to me, and and I've spoken to many women in the last couple of weeks in the breast cancer space, that it does feel like we've slipped a little bit.

SPEAKER_01 19:46

Yeah, absolutely. So so working with the Alliance, and it was helpful for me to get to kind of learn what others were doing, right? And so you start to and then working with people like Mark, um and and hearing from patients and talking to people like yourself, um, yeah, our friend Lindsay, who we we both um uh know well. Love. Yes, just the best. And you know, you you don't want to duplicate things, right? You want to figure out, you know, where can you fit, right? And so, and then the other part is you always want to be evolving and changing because um you have to because things are moving along. And I think what's hard is in any type of business, it's hard to not chase something, right? Yeah, um, but that's not really sustainable. And so, yeah, so we initially started off as as kind of fundraising, and then as I mentioned with my mom's passing, you know, I'd always my background has actually had history, like I had a degree of history, and and so I've always been interested in education, and so you know, identifying the conference was such a great opportunity, and so we did that for for 10 years, but even during that time we started to get involved more in advocacy, right? And so we worked with pharmaceutical companies um and figured out ways to have advocates attend our conference because it's very different when you're you know, when you're having like an ASCO or AECR or San Antonio, having a few advocates there isn't really a big deal, but when you're having like 200 people, you know, and you have some advocates in the room, that's very different, right? And so working through all that different regulatory tape, um, you know, between with industry and also with academic institutions, uh, yeah, it's crazy. And so, you know, so we worked through that, and then um, and we moved around, right? So we we did it in in Kansas City, then we were in Texas with Indy Anderson and Baylor, and then um we were had the pleasure of being at Johns Hopkins and Mayo Clinic, and then we were in Utah for I think it was four years in Utah, and we ended it. And when we moved to Uh Utah um the year after COVID, we decided to remove the C me component because the advocate role had been growing, and and people were getting their credits, physicians were getting their credits, you know, their their necessary community ed credits through their local tumor boards or going to San Antonio or ESCO. And so And and the physicians that were involved in the planning were like, we're gonna come whether we get we're not tuming because we're getting credit, and and they did still think. And so we started to grow the advocate part. Um, and so that was interesting, and and then there became more and more requirements for advocates and researchers to work together, right? Um, with with patients in some cases living longer, um things like side effects um uh were really important to look at, and and and granting organizations were making more of a requirement, you know, engaging with patients earlier in clinical trial design, just lots of different things, and also just that sense of urgency, right? Um, and what we did is I got again, you know, these things again, like I said, they get to a point they're not a coincidence, right? Like one of these amazing advocates, Julia, um, introduced me to uh a postdoc at Georgetown by the name of Hillary. Uh her name's her married name is now Hilary Andrews. She's at Forensic Cancer Research, which is just an amazing organization. Um, and they've been so collaborative with me and allowing her to moonlight for Teresa's as well. And it and so um we've published two papers now um in Nature Breast about the importance of the relationship between advocates and researchers. Uh and then also um the second paper is on actually a program that she developed um where we actually paired advocates and researchers together to attend our conference, and and they wrote a blog together and have sustained relationships together past that meeting in 2023, and they've it kind of taught them how to create those relationships on their own, right? Because it it's one of those things where a lot of the time, basically in in advocacy in general, right? And in the space that you and I are in, the bottom line is everyone's worried that they're gonna say something stupid, right? And the doctor, the pharmaceutical company, the government, the insurance company, everybody is so worried about offending someone, but like you only get one life. And so I think if you don't you you you you don't know, you don't know, so you you might as well just ask, and I'm being told I'm stupid and and asked and not, you know, but that's yeah. So I really try to encourage people to to ask. And um, yeah, so so that was just this really fortunate thing. And and so then the other so you know, after doing the conference for that many years, and after COVID and having children, and you start to value time, right? And time as becomes more precious, and and you start to think about other people's time, right? Like, I don't just think about mine, I'm thinking about your time, and um uh patients, uh anyone, any and whether you're working in this space or not, like time. I think we we recognize this being much more valuable post-COVID. I think that is one thing that has happened, right? And yeah, so the conference was making an impact, but I was like, I want to make a bigger impact because I get to the point where I'd be there running the meeting and planning the next year's meeting while I'm there, and so it's like you're kind of chasing your tail, you know, and like yeah, I don't know. So we I took a year off um from the organization to kind of restructure and was working on some big grants at Baylor, trying to think about what we wanted to do, and um got to have a conversation or two with people like yourself and kind of learn from these others. Um, and what happened was is is again, um, you know, with some actually um, you know, DARPA is a famous um government entity that that's how we have things like the internet. And um, they then formed a thing called ARPA for to help health innovation. And whether you think it's perfect or not, the idea of looking at these things from a larger scale is very interesting um to people that work in this space, whether you're a scientist or um advocates like you and I, um industry. And there's also other things like grand challenges where um the UK and the US are working together to fund cancer and stuff like that. So we started to say, okay, if we're gonna bring people together, let's try to solve this problem on a larger scale um and work together. And so uh I worked for many years um and is still very close with um Dr. Shongjong at Baylor College of Medicine. Um, and he's the one that helps kind of lead everything that I do and was my boss for many years there after Dr. Ellis left. And um, so we started kicking around these different ideas, and I draw out different things and go to his office and he'd say no, try again, and finally until we landed on something. And of course, then we landed on something, right? And then uh the new administration took in. And regardless of whatever you think about politics, um, it it changed the healthcare industry and not in a way. And and so then we kind of had to really start thinking about it in a different way, right? And so we and and realized that the thing that we needed to do was to be a solution, right? Like we didn't want to just say, ah, you know, kind of you know, middle finger to the to the government and just on. No, we need to find a way to move forward, right? And and so that's what we've been started to do. And and yeah, and so now it's kind of brought us on this new journey that we've been on for uh the last year and a half plus, and um it's been really exciting. We hosted a convening last year. Um, we're partnering with uh NCI designated comprehensive cancer centers in Texas, um, which is um UT Southwestern and Dallas, Baylor College of Medicine in Deeston, and Indy Anderson in Deuson. And then as I mentioned at the beginning, our my roots are with Sitem Cancer Center in in St. Louis. I've worked since we started with a doctor there who names uh Cynthia Ma. Uh she's a doctor and better person. And um we we had been kind of kicking around ideas of how to get reengaged after COVID. And unfortunately, a patient advocate that we've all shared that that she cared for for over a decade um passed away. And and things like that really push you, right? Like I'll remember for her. Yeah, she had all this stuff going on, and but she was like, I gotta do something for her. And and then was like, okay, when I get through this, we're gonna do it. And then the next day she texted me and called me and was like, We gotta do something now. And I said, Okay. And and so her and I have been on this journey together ever since, and um, yeah, it's been it's been great, you know, launching a meta static program there, and she's a part of the the Dart project that we've launched.

SPEAKER_02 28:11

Yeah, it's been really it's a it's a really interesting point that you bring up the federal government. Um we had a uh an advocate on earlier in the month talking about opportunities for um not just nonprofits, but but even B Corps uh as it comes to even Department of War funding, if you're involved in research. Because uh the way that the Department of War looks at at things is obviously always from a national security perspective. And perhaps there, you know, you might not think of money being available for your organization in the Department of War, but there may be.

SPEAKER_01 28:48

Yeah, I mean, you know, there's there's all kinds of different funding out there. I think that there's this misconception that, you know, um you know, private philanthropy needs to do more and that the government needs to do less. And um, you know, I think I guess the argument I would say is if we have money for wars, then we've got money for science. Yes, right? And again, um, what probably is happening too is that you know, um, there's a lot of blackamole going on, right? So you kind of, you know, great groups like America Cancer Society will um, you know, work and in groups like AACR who have good public policy will push things to to try to stop things from happening that are really damaging. Because what's crazy about it is like it's such a it's always been a bipartisan thing. This has always been something that's like been like the brown jewel of our country, as far as I'm concerned, uh showing that all sides agree, right? And so innovation, right?

SPEAKER_02 29:45

And and and pushing together.

SPEAKER_01 29:47

It brings money, there's so many different things, right? Most of the it helps people's help, right? And um, so like you know, over the summer, for example, um, you know, they were gonna change, they've changed the whole structure of how grants are reviewed, and it's caused a lot of problems and so luckily with a lot of work from groups from some groups that work in public policy and and and what have you, um they were able to stop some of that from happening, but then then they just come up with a new role, right? So now they've got another one they're trying to do, they're trying to, you know, they're trying to make it where people who don't have rigorous academic background to make decisions, and that's very concerning, right? Like as much as I am very embedded in research and stuff like that, right? Like I don't make decisions for people's health, right? Like I will put you in touch with them, right? Like I can connect you, I'm your blue, but I'm not making your decision. Um it never would. And and and so to have people who don't even have the same level of expertise that you and I have making those decisions is is very scary. And I think, you know, to piggyback to your other question previously, you know, kind of figuring out where the organization fits in, right? Is like that's what we we focused on, right? Is like, okay, there's some great groups doing public policy, and we definitely will support those when do you know I'll sign on the letters, and um like earlier this year we were very supportive of Serena 6, right? Because that's that does the research of what we do in. And um we um, you know, put them like funding research, right? Like we we're looking at more funding infrastructure in the future than funding research grants because great groups like Breast Gates and Research Foundation do that, right? Like Coman Funds grants, MetaViter fund grants, you know. So, you know, it's figuring out how can we be an ally to those groups, right? And I think I, you know, trying to find ways of partnership, that's where the alliance fits in too, right? By working with groups like that, you learn, and you you're involved in lots of different product groups like that, you know, it just forces you to work, like that's probably the best part of a group groups like that, right? Is it just you and forces you to have that collaborative mindset, you know, exactly.

SPEAKER_02 31:50

And and you know, I think what one of the things I really like that you said though, too, is that you know, from a political perspective or from a a uh alliance perspective, sometimes you're gonna have to work with people you don't like. And we have to get more comfortable in doing that. Um, because I find that when you know when there are those preconceptions that get in the way of a potential very beneficial relationship, that when both sides can drop them, you often find that what was holding you apart from each other really made no sense at all in the grand scheme of things or was uh uh you know completely different than what you may have perceived.

SPEAKER_01 32:27

Right, exactly. And I think you know, if you can give you allow yourself to be open to those conversations, you have a much better chance of making an impact, right? Versus if I go, you know, so say I'm you know I'm I'm working on these programs at at Site, you know, if I'm like, we need to do this and blah, blah, blah, and you're messing up, and like, well, that's just ridiculous, right? These people are dedicating their life to healthcare, right? And what's happened is is in the reality of it, what we've learned through data movement up the capture um from the experts is technology's advanced at a rapid rate that nobody, even the smartest minds in the world, cannot keep up with. Yeah, and so these healthcare executives, for example, they got into healthcare to help people, right? A lot of them are former doctors, some of them still have last, some of them even still see patients, but trying to get them to then also be aware of all these different changes and things is just so difficult. And so you have to then meet my big thing that I've been kind of working on over the last couple years, really, I guess, is trying to meet people, and I think you really helped you know highlighted this. You've got to meet people where they're at, right? Um, I think that you know, yes, it's great to shake a tree, um, but I would rather, you know, plant that tree and work and take care of it and and and and sustain it over a period of time, if that makes sense.

SPEAKER_02 33:51

Yeah, yeah.

SPEAKER_01 33:52

Um, you know, I just think that you get a lot further with that. And I kind of equate it back to my, you know, I've been on a journey around, like as I mentioned, going back to church, been doing a lot of work on mental health, getting on social media. I've gotten off social media a lot, which is not great working in this space, right?

SPEAKER_02 34:07

So it's gonna be difficult.

SPEAKER_01 34:09

great for my mental health because you realize again with this technology advancing we don't realize all these things and and what they're doing to us right And and and and how they impact us. And yeah, what I I've I really have learned that like, you know, trying to come at this with with you know kind of good energy, and um, you know, and I think also like there's a lot of different groups out there, you know, there's like the let them theory, right? Like, you know, you just it just it takes a lot less energy um to just kind of focus on what you're trying to do than being angry all often, right? And yeah, I want to be clear that it it's justifiable to be angry, uh especially with a terminal terminal illness. I mean, your experience, I mean, good god, what you've been through for stuff. Um no reason to not be angry totally, but I've just found for myself that um you know, coming at it, and I think also it probably comes from many a year of going full gas. Um, you know, I know it sounds like for you. Slows you down, yeah, you know, and and you know, and so I've just kind of learned that kind of slow and steady for me wins the race.

SPEAKER_02 35:16

Yeah, no, and you you said this earlier before we even had a chance to to um to begin our our recording, but that you know, if there's an emergency, right? Um you can run and you can shout and and you can hope that you'll accomplish that which you want, or you can go slow and walk and keep your cool, and you're gonna have a lot more happen in your favor than if you were to go nuts, right? So um I think that is a great way to also think about innovation in healthcare as well. Yes, AI is coming along at breakneck speed, opening up opportunities, but if you are creating therapeutics faster than patients or are or physicians are able to be educated about them, or about uh even we were talking about um biomarkers, right? If you're if you're coming up with biomarkers or having opportunities to test for things that we don't know what they do yet or how to utilize them in clinical practice, what's the point? No one's gonna be with you to even know to do it. So, how do you uh Teresa's help capture that or tackle the big issues and make sure that, you know, like you've done with the work of partnering advocates uh with researchers to ensure that the patient community is brought along as well?

SPEAKER_01 36:34

Yeah, uh absolutely. I mean, it's it is right. I mean, all these, you know, I was lucky enough to be, I've been a part of, you know, the so in pharma they have things called perceptorships where they they teach their company, you know, about um drugs and so for one company. When I was at Baylor, that was my job. I ran a perceptorship for one of the CDK 46s, and and and so that was a big lesson, right? That was one of the first big treatments to come out in ER positive. Um, and yeah, people weren't prescribing it, right? You know, because you know, even though it had the approval and F all the things, it you know, trying to engage with everybody to get them up to speed, it takes a lot, right?

SPEAKER_02 37:11

And you know, yeah, behavioral change is difficult.

SPEAKER_01 37:14

Behavioral change is difficult, and then when you look at like in a community oncology practice, those doctors are amazing, they dedicated their life. Yeah, I'm sure there's a few bad actors and anything online with our always, always for 99.9% of them amazing human beings. They are seeing a multitude of different cancers, and so to expect them to be you know up to date on everything is really challenging, right? And they don't have the infrastructure necessarily always in place to do so. So that was a really valuable lesson for me. And and I got to work a lot with some different companies to learn about that and learn that you know, hey, we probably need to do some other things first before you know just developing another educational material, for example.

SPEAKER_04 37:58

Yeah.

SPEAKER_01 37:58

And so um, one of the things that happened was so last year we we had this DART convening, right? And the central thing that came out of that was that the problems are no longer just biological, but actually more structural, right? So, you know, there's been such advancement in technology and research and and drug approvals, but to your point, they're they're getting approved at a rate that there's no way that doctors can keep up with it, you know. And then also you're trying to think about like, okay, if I give them give it, if I give them it, this line of, you know, there's multiple lines of therapy, right? Um and uh, you know, so then if you give it there, then you might lose a line down the line. Like, you know, like it's just it's I mean, the complexities of it um are real. And to expect anybody, um, physician or patient or anyone to kind of know what the the best avenue is is is really difficult. But what we what we realize, you know, is like, okay, yes, we want to keep doing the research and move that forward, but we need to look at other things, and so that's part of the reason why I re-engaged with the alliance was I didn't want to get involved in all that with Teresa's because we work more on the research side. Um, and I felt like that would be irresponsible and I just didn't have the bandwidth. And I felt like there was some great organizations out there doing this work, um, and also more opportunity to work with Pharma, who also because they've realized and and and as they develop these new oncology drugs, that that that there's more to do than just you know the marketing launch, right? A lot to do.

SPEAKER_04 39:34

Yeah.

SPEAKER_01 39:34

And and so there, you know, there's a lot of opportunity to work together. I always say to people, like, you know, sometimes people will say, like, well, I I hear when you're in the room, I hear that and and I hear that over here. Like, and I told people like, if you're not hearing that these are a concern, you need to leave that meeting, right? Like, because when I'm talking to physicians, they are concerned. When I'm talking to patients, they are concerned. When I'm talking to pharmaceutical companies, they are concerned. When I talk to, you know, I don't talk as much these days with government entities, but when I have in the past, and I know people who do, concern, right? Like, yeah, anyone that works in the space that you and I are in, they are concerned right now. And if you're in a meeting where someone says, oh, everything's perfect and rosy, you should leave that meeting because it's not going to be out. You know? No. And so the big thing that we're trying to do is again back to that slow and steady thing. You know, yeah. I've been a part of things where you try to do this large national thing, and it just falls apart because it's just really hard. You know, the example I can give you that someone said to me recently on the call is like when they open a clinical trial on one site, there's a different process at another site. You know, so trying to do something on a larger scale can be really hard. So if we can it take a lot of time, and we don't have time, right? We need to help people. Yes, we want to keep working on advancing research to find that cure, and I hope I find it in my in that my lifetime. I get to see that, and we've seen it in you know, uh HER2 uh metastatic patients. We've seen it now in with with immunotherapy and and melanomas, and um, and I think with the mutation uh discoveries and some some of the small cell lung cancer, I believe it is, right? Um and and other rare diseases as you've you've worked in, seen some progress, but we have to help people right now, you know. So that's why like I love talking to people like yourself because that's what you're doing. And yeah, so when when when we saw that as a thing, that this this is a structural issue, and and this issue around access, like you said, about like even prescribing the drugs, there's just things we can do right now. I mean, I even around diet, right? So, like, there's people in underserved communities who aren't even getting a meal, and we're worried about them getting a cancer drug. Well, if you could get them a better diet and get them to get their drug, their life expectancy is likely extended. So there is just a plethora of things that we can do right now to extend people's lives. And yeah, so as the patients tell people like you and I all the time, you know, it's not also just about living longer, it's living well, you know, and so I think that's also now something that you know we're really looking at, right? And and looking at with drugs and things like that, you know. Right now there's a big big push in the breast cancer space around mutations and finding you know drugs that target mutations, which is great. But you know, I also, you know, I'm working a lot in site-specific metastasis and brain medicine and um you know things like that that you know you want to see some some some treatments there, and and also just look at drugs that could be, you know, there's a lot of um in lots of different disease space, there's these these these antibody conducts are great, you know, they're having really good success. They target the brain from what what the doctors are telling me, but then the patients tell me the level of toxicity, and so yeah, right. I mean, uh the way I can equate it is like so when my mom was still alive in 2013. Um, she was you know, uh that spring of 2013, she was really sick, and she didn't think she was gonna make it to my 30th birthday. And um, she got lucked out and got on uh a drug um called Hal Haliban, I believe it is, um, a company called AZI. Um gave her um three or four months of life. We were able to go to Florida, she made it to my 30th birthday, and it was amazing. Um that was that was in 2013, that's where we were living, right? And and and that's when when drugs were being designed, you weren't thinking about side effects and all that. And um now things are different, right? I mean, there's some people that are on a CDK46 for a long time, and there's just lots of different things that are happening, and so that comes with it. Um, you know, lots of things around that need to be addressed, whether it be financial or um more importantly, with their quality of life, you know.

SPEAKER_02 43:53

And financial toxicity, right, is is a real thing. And uh the cancer community knows better than anybody. About the rate of bankruptcy uh associated with medicine in the United States. Why is it that that we can't fix that as a first world country? I don't understand.

SPEAKER_01 44:12

Yeah, and it's like with biomarkers, right? It's like, why is it such a struggle to get you know that insurance cover when that can we know can reduce healthcare.

SPEAKER_02 44:21

You reduce spending.

SPEAKER_01 44:22

Right, reduced spending, you know, and it's such a fight, and I have you know a couple patients I'm trying to help right now with you know, trying to figure out what's going on with it, you know. Um it's it's nuts. And um I I think that um so that the problem, so this is kind of where you can see, oh, this problem is no longer just biological, it's it's this larger system change. And so yeah, working with our dear friend Lindsay, you know, and and and everyone, we've we've been able to identify some areas, and so we're trying to pilot some projects, um, working on biomarkers to help prove clonal utility. We're looking at trying to better assess the metastatic population in in different hospital systems, right? Because we don't some hospital, we don't even know. The other thing I guess to say too is like, well, wait, you're telling me, wait, Josh, and that you're telling me there's all this advancement. Uh we're we're good to go. Well, you know, let's move on to AI and uh, you know, go into models, right? You're good. And it's like, no, no, no, no. Wait, actually, here's the thing the amount of people, one, so many people are suffering with an illness, whether it's cancer or some other type of rare disease or illness that are struggling with on a daily basis. The other thing is the data that is showing of what is down the pipe, right? What is coming into the future about people diagnosed with ailments is alarming. So we better do something about it, right? Like this problem isn't going away. And so, so we're really looking at trying to say, like, can we partner with you know some institutions to show some examples and then also take that data, right? So, like, I'm I've become obsessed with data, you know, data, data, data. It's like I use everything is data to me, right? I'm just just giving me, yeah, you know, you know, they're all you know obsessed with, you know, um, you know, people I work with are obsessed with mouse models and I love that stuff, and that's great, but I'm obsessed with just obtaining information from people like yourself and others that I can just learn from on a daily basis to help me.

SPEAKER_02 46:20

Be a sponge, yeah.

SPEAKER_01 46:21

Be a sponge, not duplicate, right? Don't wait, because I don't I don't want to waste a single dollar, I don't want to waste anybody's time, as I mentioned before. And so what we want to do is, and too, if we have that data, like there's been some really great projects um from this doctor out of uh these two doctors out of Wash U, um uh Dr. Andrew Davis and Emily Panani, who are working on these underserved populations uh in the St. Louis area and have able to use that data that they've obtained, show it to leadership, and then actually get a nurse navigator. And it's been a huge impact in patients' lives. Just a little very small scale.

SPEAKER_02 46:59

Yep. And unfortunately, right? Yeah, but unfortunately, all we've been seeing is hospitals cut navigator roles because they're non-revenue generating. Right? But you're if you're able to prove the value of that person to the patient and to their well-being and to the system as a whole, that's true, you know, structural change.

SPEAKER_01 47:22

Right. And exactly. And like our thing is is like if that's why we're really focused on this infrastructure. Like, if we end up having to fund you know, people to be on staff so that it's not so focused on making sure, because we don't want to bill patients for another visit, right? Like that's sometimes, right? At a place where you know they've gotta pay to see a navigator or a dietitian or this or that. Like they can't afford that, yeah. Or they may not have insurance may not cover that. And so it's it's you know, and and how and and the people that are working in it know it too. So they're they're trying to back. And it's interesting, like I was talking to this amazing patient advocate, uh, Mary Beth, last week, and um, she works on this whole intersection um and has an organization called Outperform Cancer that that I work with her on, and she's so amazing. And and we were just talking about like greeters, right? Just having someone greet you when you walk in the door, whether you're a cancer or whatever. Like, I mean, one of the biggest impacts on my life, and like he's laying across the floor over here on the other side is my he's uh he's a gold retriever. Um, this one is an English cream, um, but I've had a regular golden. And when my mom was going for treatment back in 2012, 2013, I still remember the gold retriever's name that would come visit her in the fusion. His name was Todd. That stays with you. Yeah, you know what I mean? And so when I was talking from Mary, but we were talking about this, like we've gotta figure out this. One of the things also that if we can take this data, we can find a balance and say, like, look, we understand that we know, like that with the data how expensive things are right for these things. But there's some ways, and especially like people like you who are using their knowledge now in AI and others, like we gotta find some ways because we do need the technology, but we do need human human human interaction or human adoption or chat and um so just things like that um uh are really important because I think what groups are also realizing, like I was uh um Living Beyond Breast Cancer and longevity, have this no one miss campaign on biomarkers, which is a great program, start you know, supported by pharma as well, and biotech and testing companies. And they even know like there's a lot of people getting missed that are you know the newly diagnosed, right? We've captured that more studies to start with the appropriate.

SPEAKER_02 49:40

I think we're what I think I saw 60% missed.

SPEAKER_01 49:44

Yeah, I mean it takes a lot of steps for them to get to these organizations, right? You know, yeah. Um yeah, and so how can we, you know, I mean, and that's the thing that's been so great and and been so humbling about this kind of new adventure that we've been on, is like the providers are the ones coming to me saying, like, I want to do more for my patients. And yeah, that is, I mean, just gives you chills, you know.

SPEAKER_02 50:09

Um yeah, how do how do you you think we reduce the number of steps or the number of visits or the amount of hours it takes for a patient to get introduced to an advocacy organization or a peer support program?

SPEAKER_01 50:24

Yeah, well, I think part of that is one, is that I don't know the answer to that, right? So I think one of the things that I'm learning too is that like we don't have all the answers, right? I think so much so much there's such this pressure to have the answer or that you know the answer so that you can show that you're smart or get the money from somebody to do something, right? I think the thing right now is is what what I'm what I'm on this journey on is to have conversations with with with experts, to be a sponge, as you mentioned, um, learn listening to the hospital systems, listening to where their red tape is, listening to where their roadblocks are, listening to where the patients are. What I know is this is there's a concern by all about how overwhelming it is, right? Because as I mentioned, you know, when my mom was alive, three or four different treatment options, and that alone is overwhelmed, right? Do I want to have treatment therapy? Do I not? You know, oh my goodness. Um now, you know, hey, you could go in this clinical trial or you can do this. But by the way, if you do this, then you may not be eligible for this down the line. Yeah, yeah. You know, and then a doctor is supposed to know, you know, and so that's why, like, for example, with like you know, the Serena 6 trial, you know, you know, there's a lot of debate about that because it involves switching and and things like that, and using things like biomarkers and ct DNA. And I'm not a doctor, I know the doctors who were involved in that, and I know how to complex, you know, and like it's not the thing about something like that, for example, what I would want like the general public to know, that's an example of something that's not just like a couple year thing, like like like Dr. Nick Turner's from the UK, he has been working on I've been in, I don't know, probably his whole career, right? Before the years and years and years before the trial even gets launched, right? So I think that's one thing too is that like we have such a distrust in society. And yes, there are like I said, there's always a few bad apples in anything we do, but 99.999% of these people, man, they're they're coming at this one in this space.

SPEAKER_02 52:22

Yeah, and you know, it it you you say it perfectly that you know there are definitely some bad apples, but 99.9% of these folks want to help each other or want to help patients. Um, I'm not sure if you saw the story yesterday out of Nashville, um, but the patients who went in for uh joint replacement and unfortunately woke up paralyzed because of a mistake of a mistake in the pharmacy for the wrong med in the nerve block. And so we can run and we can continue to run as fast as we want to try to pull patients through the system and you know cycle numbers in a cache machine, or we can go at the right pace, go slow and do it the right way, and build trust in the system along the way.

SPEAKER_01 53:12

Yeah, I mean, we couldn't have said that better. I mean, I think that building trust is so key. And I think too, like, so the other thing that's this issue so that that has popped up is, and I touched on a bit on the community oncology side with the different types of cancer, but yeah, the fall, as I mentioned, what's coming down the pipe, but earlier, right? The amount of people that they see a day is insane, and that's even not true in these comprehensive cancer centers like your Seitman's or uh MB Anderson. I mean, um uh Dr. uh Bor Lim, who's amazing. I mean, she sees so many patients in a day, it's insane.

SPEAKER_02 53:49

Wow, yeah.

SPEAKER_01 53:51

You know, so there's a lot of this this, you know, for many years I was so on this second opinion kit. And now I'm like, again, that's an example of what you're talking, right? And that like, yeah, you run fast, and you're like, okay, second opinion, everyone you should have a second opinion, and you should uh no no, slow down for a second. Because if I say that all the time, then why is someone gonna refer out? And also these doctors can't even see them, and you don't want the patients to wait. It's about providing them the skills to ask the patient to ask the right questions and giving patients the time to be able to answer them to ask them.

SPEAKER_02 54:23

Yeah, I'll completely, completely agree. That's exactly where our nonprofit is focused is empowering patients to recognize that their voice is still important, that they should not hand over all of their rights in healthcare to their provider, um, because the provider is being held to a standard typically by their hospital of you got X amount of minutes, so you have to see the next patient. Though they want so desperately not to not to leave you, they they have to.

SPEAKER_01 54:53

Right. And I I think that the thing about that I would say is that the other thing in talking to groups, and I worked at working at Baylor, um you know, patients that had had an advocate with them, you know, a loved one or a friend or someone, they do better. Um that's still true today, right? And and so I think that's where this whole advocacy thing comes in. You know, um obviously I work more in the research space uh of advocacy, but you know, even just you know, patient, you know, your your basic patient advocacy of just your care. You know, I think what happens is is that um I mean there's certainly those stories where people, you know, you know, feel like they're hitting a watch, but I also have stories of people sitting there for two hours with a lot of things. I think the problem is that you're faced with this thing and you're so overwhelmed and you're so scared, and you just want it to be gone, you know, even like in early stage uh breast injury, for example, if you just want it to remove the dog, you want it out, yeah. But what I tell people is if the one thing I would give them is like if you could again just take the time, just take a deep breath because that decision you make can affect the rest of your life, not just tomorrow. And yeah, that's not a normal um way that our brains function in society.

SPEAKER_02 56:12

You know, it's always survival, right? It's immediate survival, yeah.

SPEAKER_01 56:16

And you're you know, you're you're just hit with this thing, you you know, you weren't expecting this, right? Like, I mean, you know, my wife's a good example. She was just, you know, we were just excited that we were pregnant with our second second child, and we're yeah, we're gonna go on this this journey, and then you know, you know, God had a different plan, right? And then it was like you're then expected to make all of these decisions, and yeah, and you're telling people, but wait, take a take a beat for a second, you know, go take a beat, you know, do some reading, talk to some people, figure out if you have any loved ones that work in healthcare. Wait, no, I I want to be done with this. And then after you go, it's like, oh wait, I might need to go ask more questions, or wait, like, I need to go to another appointment, or oh wait, I gotta do and and oh wait, I gotta tell my kids. So the other thing I'll say too that I've been really grappling with a lot is that like we are outliers, right? Like the majority of people um who've been impacted by some kind of health condition in their life don't go into advocacy, right? Yeah, um, they don't become patient advocates, and so I think it's not necessarily representative representative of what the actual patient population is is, right?

SPEAKER_04 57:34

Yes.

SPEAKER_01 57:35

Those people who work in advocacy, oh my god, they're my heroes, right? Like some people get yeah, wrong I, you know, I would be pumped if I got to meet Ronaldinho uh on the soccer nut. But yeah, I also get nerded out by you know being on a call with um you know someone like uh uh when I was getting to work with Shirley Mertz, uh, you know, because she she paved the way for everybody, you know, yeah, or or some of these doctors, you know. Um but yeah, so I think it's just you're you're you're asking someone to completely change their thinking, you know, and so we probably need to change their nature. Right. And um uh I'll have to send it to you, but I had this amazing patient advocate, uh, her name is Lynn, and she used to um before her diagnosis of metastatic, um, she worked as a executive director and in and for a mental health nonprofit in St. Louis, and so she has been taking these this these experiences and helping us a lot in cancer and in metastatics. Wow. And she gave this amazing presentation last week on health. Oh my goodness. Um hope, sorry, on hope. On hope. And it was amazing because I think there's this misconception that you have to pretend like all things are pink and rosy and perfect, and you should just be happy that you're alive, right? You know, like like in your case, right? With what you've been saying, you should just be dead while you're here. Uh, how dare you want to you know have a company and start a nonprofit and do anything else or whatever, you know? Yeah, um you should just be happy, you know, but you can't be mad if there's traffic or something, you know. And that's not the way that life works. And so what she did last week, it would like blew my mind now. And that what she said was this idea of hope, it's not about trying to pretend like things are rosy, it's about giving you the skill set to succeed in life, right? Like to navigate your care, to get through those hard times, right? Because there are gonna be hard days. And one of the perfect examples that she gave is like giving you having that hope can actually give you the courage to say no, right? So, like she was like she had mentioned to me like that she had joined up, signed up to be a part of a gardening club, and then realized I just can't do that. And because she had been working on herself, she had you know herself before, right? She would have just cut going or whatever, she had the courage to say no. And what's interesting about that is you know, the you can what I have found because I've you know had had to do that in my life in the last few years with my kids' behavior. Sure. Um, and just also just trying to manage things and want to focusing on the certain tasks that I have to try to improve that for patients. Um that when I say that, like I'll give you an example. Like there was a conference I needed to go to on Friday, but I can't go because I have to do some other some other things that I have to take care of between family and um for the alliance. Sure. Meanwhile, I got back and that person, oh my god, it was just so amazing. I totally understand, you know, and and so I think there's also that that again going back to that conversation about being afraid, right? That like the wrong thing or whatever. Like, oh my god, like when you're in that doctor's office and they say it to you, say, it's okay to say, huh? Can you repeat that?

SPEAKER_02 1:00:53

Yeah, or yeah, I'm not sure.

SPEAKER_01 1:00:55

I need to I need to go home and think about that.

unknown 1:00:57

Right.

SPEAKER_02 1:00:58

Or if you were me, if you were me, what would you do? And why? Yes. Right. I mean, I I completely agree with you that that um we we do need to a remind folks that truly, in in in most cases of cancer, it does come down to hope and your and your mental standing in the fight. Um but at the same time, how do we uh ensure that there is that glimmer of hope so that no one feels um like they're going to be talked down to, or they don't care if they're gonna be talked down to for asking a dumb question. Because it's your life. It's at the end of the day, this is your body that you get one of.

SPEAKER_01 1:01:44

Yeah, and it's I I love that you said that so much. It it's um you get one life, right? And and to me, the thing is it's kindness.

SPEAKER_02 1:01:51

One at bat, right?

SPEAKER_01 1:01:52

Yeah, and but to me, it's kindness, it's a hundred percent of kindness, and um, if you are in a room with someone and you don't feel that, you should leave.

SPEAKER_02 1:02:01

Yep.

SPEAKER_01 1:02:02

I agree with completely like like one really are like especially in the work that you and I do, there's gonna be some difficult conversations from time to time, you know, working with with different people. But yeah, you you should feel that level of kindness, you know. I think you know, we both work with industry, and I know that's part of our audience here. I can't tell you the amount of people that I've met that are so kind that we just will check in on me as a person or or check, I've seen them check in on a patient, or yeah, to get something approved for a patient when it's not even in their space, right? Not even like remotely in the area that they work in.

SPEAKER_02 1:02:37

Yes.

SPEAKER_01 1:02:38

Um, you know, um and so I think that means everything. Yeah, and then and I think the other thing is as we I think we talked on it a little bit before the start of the call, is like the other part, in addition to the kindness, is and this I think applies for whether you're working in industry or if you're just a patient going to get care or or you're a doctor, is that it, you know, because kind is so insane um and and moves so fast, um, we we everything becomes we have we have moved into such a transactional society, right? Um, whether you're getting something monetarily out of it or you know, what whatever. And so I think it's got to move away from that transactional relationship and be collaborative. And it's funny, like I've been having those conversations with people as as we talked about over the last year, and and our friend Lindsay has helped me with that a lot and has really taught me a lot about that space. And I'm sure you have something to do with that as well, knowing you know, like it is crazy because when you talk to people, they're like, wait, you're you you it's not just about money, you don't know. Like, I actually I care actually more about you as a person and and yeah, you as your and and uh your and your brain, your brain, yeah. So that's like a good example on the patient advocacy. Is that like so many times they look at him as just a patient, and like as I mentioned to you about Lynn, I mean, she's a former ED of uh mental health. Mary Beth was like a CEO of this, Shirley was a principal and trained lawyer. I can go on and on and on and on um about these people. You know, Joan uh uh is another uh my closest advocate friend for my time doing this. Uh, she's she's retired from she's done it for so long. You know, she was a publisher and worked in editorial, and these people have these just brilliant minds. And these people that you know, in the industry, a good example I can give you is like I can never have a staff that large, right? I am never gonna have the intellectual knowledge that is necessary to execute some of these things, right? Yeah, but these companies do, and so if I can learn from that, oh my god, you know, like I for your own organization, yeah. When I was at ASCO, I was talking to a gentleman who works in AI at one of these companies, he totally changed and in a matter of a lunch taught me how to properly do props in AI. You know what I mean?

SPEAKER_02 1:05:04

Like I mean, that's massive.

SPEAKER_01 1:05:06

It's massive, you know. I mean, you know, we've been building recently. Yeah, so it's it is crazy. So I think, yeah, just in general, whether it's work or personal, like just making it where it's you know, um, it's the same thing with like politics, right? Like it's like you know, we've all lost relationships regardless of what your viewpoints are. Yeah. I think it's it's it's important to realize like, eh, is that really worth it to you to do that, right? Yeah.

SPEAKER_02 1:05:30

So I think really lead with kindness, right?

SPEAKER_01 1:05:33

Lead with kindness and and focus on on having more of a partnership, a collaboration, a relationship. Yes, and not just thinking about, you know, um, what am I gonna get out of this? Uh, you know, and it I don't think that that's what you know people's intent was. I think we've all just naturally got pushed into it, right? At least these phones, right? We've just all got pushed into that world, right? I don't think we could not agree more than desire, and realize what these objects. Algorithms and these things can do, you know.

SPEAKER_02 1:06:02

Um that in a 24-hour news cycle, right? And there's so much fear uh that we lose out we lose out on our kindness to fear, and we just react and take the transaction rather than go slow and engage at a deeper level and understand what each person has to provide because we are all put here with special gifts. It's up to us to make sure we get the most out of them from others.

SPEAKER_01 1:06:28

Yeah, you know, it's what it's why we're here, you know, to make an impact. You know, what while we're here on this earth, I just want to make a difference in people's lives. And and I think that um, you know, I I I've done I as I mentioned mental health is so important. I I think my mom made me do start therapy, you know, when she was still alive. And God bless her, she helped me greatly in my life. But honestly, I actually have made more progress in the last year not doing therapy, but just getting off of social media and getting off of that 24-hour movie cycle. It doesn't mean that I still pop in and out, but like I'm a little slower. Like a good example was like all the flooding in Indiana. I mean, I kind of missed that initially, so like I was late. Sure, and a few people that I needed to check on. I felt bad, but I just you see you miss out on stuff, you miss out on ones of schools, and I try to get my wife to make sure she shows me. But yeah, so you think it's kind of just like being aware that like, hey, that that is a that has an impact on me. And it's not because I'm I'm not. I think the thing too is that it's like you're not bad, right? Like you're not doing anything wrong. It's it just naturally does it. And so try to be more aware of that.

SPEAKER_02 1:07:35

I mean, go back to when we were growing up in the 90s and you had to actually wait for your friends to show up if you had plants.

SPEAKER_01 1:07:41

Oh, I know. I was watching.

SPEAKER_02 1:07:42

And hope that they did, you know?

SPEAKER_01 1:07:44

Right. I was watching some TV show with my daughter, and there was like an actual uh phone on the wall. Yeah, that's really cool.

SPEAKER_02 1:07:53

Oh, yeah, let me tell you how cool that was. Everyone got to hear your phone calls. Josh, I I want to be cognizant of your time, but I always like to end with the the same questions for all my guests. I just tweak it slightly uh based off of your story. But if you could go back to when you were, I think you said 30, right? Right when you lost your mom there in 2013, and you step into this new role, what would you go back and tell that, Josh, today, based off of what you know now?

SPEAKER_01 1:08:23

Oh. Slow down. Slow down and take a breath, right? You know, um, I was just going a mile a minute, and I think um also, as I've worked on a lot the last year, realized that and and I can appreciate that from the patient perspective, like this idea that I needed to be happy in every moment of my life, you know, because I watched my mom suffer, and so she would want me to be happy. It's like that is just so ridiculous to put on yourself, right? And and also in expecting other people, you know, um, you know, your your your partner or whoever to just you know, um the best thing I there was a podcast I listened to um of a a Buddhist monk in in Germany, um and he's he's brilliant, and and he they asked him if he was happy, and he said, I don't even know what you mean. Like there's things that happen. I yes, I've seen that. Yes, and he says, I'm searching for peace, and and that just like it shattered the glass on my whole entire life. And so that's what I search for every day. Is I have moments throughout the day where I my wife, my kids will tell you I lose my shit.

SPEAKER_02 1:09:27

Um Dads with daughters, no way. Yes, exactly. I don't outnumbered you.

SPEAKER_01 1:09:32

Yeah, me and my dog, yes, it's him and I versus the three of them, and we lose every tap.

SPEAKER_02 1:09:37

That's it. That's it. I'm with you in that same boat.

SPEAKER_01 1:09:40

And uh so, but yeah, it's just that it just takes so much pressure off yourself, right? When you don't have that level of expectation that you have to be some certain way, um yeah, and then that allows that kindness and that that level of of empathy to to really come through a lot more easily, I feel like, when you can take that pressure off.

SPEAKER_02 1:10:03

Yeah, and then and then you're not um that you take that pressure off, but then it allows you uh not to fake it either. You can just fall back into your natural state and hopefully lead with that kindness. So well, Josh, this was a fantastic, fantastic uh conversation. Uh thank you for all the work that you do at Teresa's as well as the Metastatic Breast Cancer Alliance. We'll make sure that the um listeners get an opportunity to have links to those sites uh and the show notes, which they'll find uh on all platforms in a couple of weeks. Um but appreciate your time as always. An absolutely fantastic conversation and best of luck, oh thanks so much, Matt.

SPEAKER_01 1:10:42

I appreciate everything. It's always a pleasure to talk to you, and I always learn so much. Thank you.

SPEAKER_02 1:10:46

Fantastic, thank you.