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The Positive Gene Podcast: Alive and Kick'n with David Dubin on Lynch Syndrome, Advocacy and Moving Forward | Season 3 Ep #10 (Lynch Syndrome Series)

(Links mentioned in the Episode are location at the bottom of the page)




SUMMARY

This episode kicks off a five-part series on living with Lynch syndrome, released in recognition of Lynch Syndrome Awareness Day on March 22.


When I was first diagnosed with Lynch syndrome, there weren’t many voices sharing what life with hereditary cancer risk actually looked like. One of the first organizations I discovered was AliveandKick’n. What stood out immediately wasn’t just the information they shared, it was how they shared it. Honest, approachable, and grounded in the idea that living with Lynch syndrome doesn’t have to mean living in fear.


In this episode, I sit down with David Dubin, Lynch syndrome survivor, longtime advocate, and co-founder of AliveandKick’n.  David shares the story behind his own cancer diagnosis, what it meant to discover his condition was hereditary, and how he and his wife Robin turned that experience into a patient-led organization supporting individuals and families navigating Lynch syndrome.


We also talk about the importance of family history, advances in treatment and research, and why awareness still matters, especially as we approach Lynch Syndrome Day on March 22.


In This Episode

  • David’s colorectal cancer diagnosis at age 29

  • Discovering Lynch syndrome after a second cancer diagnosis

  • Navigating genetic risk within a family

  • Why knowledge and genetic testing can be empowering

  • The founding of AliveandKick’n

  • The impact of community and patient advocacy

  • The Living with Lynch workshop program

  • Advances in Lynch syndrome research including immunotherapy and microsatellite instability

  • What newly diagnosed patients should know

  • Why awareness of family cancer history still matters


Key Takeaway

“It’s not a death sentence. The more you know, the better your opportunity is to treat it and live a long, productive life.”— David Dubin


TRANSCRIPT:

Welcome back to the Positive Gene podcast. I am your host, Sara Kavanaugh. Now, when I was first diagnosed with Lynch syndrome, there weren't many voices out there, much less voices that felt steady practical human, but one of those first organizations and perspectives I found was Alive and Kickin. And what stood out for me wasn't just the information about Lynch, but how it was shared. And again, that honest and approachable focus on living life and not living in fear. So that's why I'm so excited to welcome today's David Dubin is a Lynch syndrome survivor, longtime advocate and the co founder of Alive and Kickin, a nonprofit dedicated to education, awareness, and support for individuals and families navigating hereditary cancer risk. after his own colorectal cancer diagnosis and learning, he carries Lynch syndrome. David, along with his wife, Robin, have helped build one of the most trusted patient led organizations in the Lynch syndrome community, connecting patients, families, clinicians and researchers while keeping the conversation clear and relatable. David, I am so happy to have you here. I finally got to meet you in person last week in San Francisco and now I'm so happy to have you on the show. So welcome.


David Dubin (01:23)

I appreciate being called steady, practical, and human. I don't often get compliments, so I consider those to be compliments.


Sara Kavanaugh (01:26)

Yes, they are, totally. I mean, it's been a consistent presence for me since my diagnosis, so at least from my perspective.


David Dubin (01:40)

No, appreciate you sharing that. And it was a pleasure meeting with you as well. I look forward to meeting new folks in this space as there does seem to be only a handful of us that are really out there on the advocacy side for Lynch syndrome. So I'm very pleased to be part of it and very pleased to see some new faces come in and voices come in, so to speak. And I think you got a great one.


Sara Kavanaugh (02:03)

Thank you. I appreciate that. So before we get deep into Lynch syndrome and advocacy, speaking of which, but I have to ask, like, how do you usually introduce yourself when cancer advocacy comes up?


David Dubin (02:20)

so first of all, I usually introduce myself as a Lynch syndrome survivor, two time colon cancer survivor, well as a kidney tumor. but that was not, not a really heavy one, I guess. but also a above average soccer coach and player. But that was a while ago. I stopped playing at 50. So I guess I can't call myself an above average soccer coach and player anymore. I don't know what to call myself.


I mean, that is how I, yeah, so I introduced myself that way, more of a Lynch syndrome patient who happens to have had colon cancer twice and a kidney tumor. In our space, I like to point out that I'm a Lynch syndrome survivor as opposed to let's say a colon cancer survivor. It's a subtle nuance, but I like to position it that way because I do feel the Lynch syndrome component does need to be brought out in conversation. There is quite a few folks on the advocacy side in the colon cancer space and it's all warranted. I think it's great, but that's how I describe myself.


Sara Kavanaugh (03:16)

Yeah, that makes sense. Okay, now take us back a bit. What was going on in your life before cancer? I think because your cancer diagnosis came up before Lynch syndrome. So what was going on in your life before cancer showed up?


David Dubin (03:32)

Well, it was, as I like to joke, was before electricity, but that actually is not true. was before the internet, which is also true. So this was back, we were going back to 1997. So I was 29 years old and I was having your, what would be considered your traditional symptoms of colorectal cancer. But again, at that age being 29, you just not something that you really thought could be happening to you even though it did happen to your father and your grandfather before you, I was still too young. I was still playing soccer. I was still working full time and still am. we were pretty much kids, just gotten married, first son, first house, running a business. It seemed to be stress related or, again, this again, before 19, you know, before the internet really became what it is today, which I'm not sure is a good thing, but you know, you weren't Googling anything. You were essentially trying to figure it out yourself and calling upon experts. And thankfully, you know, even though I was turned away at the door for, for six months, because this was when HMOs had started, I did get finally diagnosed and did wind up having a surgery in chemotherapy was stage three B. And yeah, it was kind of a rite of passage that another Dubin male has colon cancer and here we go again, this is, but the, the thankful thing and you've seen the history where you, you've followed it a little bit. And those who have been in Lynch syndrome space and have seen my story know that the, one of the good components, if you want to call it that is that yhe Dubin men have had long, active, energetic, fruitful lives post cancer, post multiple cancers. So I wasn't afraid of it. I never thought it was going to be the proverbial death sentence. I thought it was just something you took care of and you moved on. And ultimately that is actually what it turned into.


Sara Kavanaugh (05:34)

Yeah. Yeah, that leads into, you know, my next question related to your mindset, but you've kind of spoken to that already. But you approach things as “let's deal with this kind of guy”. Were you that way before your cancer diagnosis? Do you think that that narrative of your cancer family history led you to that state? Or is that something that's just developed over time?


David Dubin (05:59)

It's actually not sure, you know, it's been so long. So I would say, I'm to go out on a limb and say, yes, it was my nature previously. Again, we're talking in our twenties. You know, I've always considered myself to be level headed and, you know, kind of the ability to absorb things first, as opposed to reacting first, which not everyone has that capability. I actually talk about this. was interesting as when I was back in the, again, back in the nineties, I wound up on a grand jury duty and it's one of those things I'll never forget. Here I am in my twenties and you have 30 some odd people, many of which were older than me, looking to me for a reason, which I found very interesting. So kind of whatever I would put forth seemed to resonate with people and they felt comfortable with, which again, I found surprising given my age at the time.


That all being said, do consider myself to be responsible. I do consider myself to be level-headed. I think one of the things that makes my family crazy is that I'm notorious for listening a lot. Yes, I do have a good voice and I do appreciate it, but I do a lot more listening than I do talking in public and in public settings, in the space. I'd rather people are more comfortable with the conversation. It doesn't have to be me dictating. So I would say, yes, that's my style.


I mean, the family history and again, the fact that my father, my grandfather had gone through it and they were still, they, ultimately my grandfather lived until his eighties, died of Alzheimer's, which again, you're supposed to, that's the way of putting it. My father ultimately almost reached his 90th birthday as well after three cancers.



Sara Kavanaugh (07:44)

Good. Lynch syndrome didn't really approach the conversation until your second cancer diagnosis, which was sometime within 10 years from your initial diagnosis. So yeah, when you heard that it was genetic. I mean, what was your first reaction?


David Dubin (07:50)

Mm-hmm. 10 years.  Well, there were two reactions. One was, there were actually there were three reactions. So let's, let's parse them all out. The first reaction was how did I develop a second colon cancer after a previously clear colonoscopy, roughly 13 months with, and I had no symptoms in this case. So first cancer in 1997, I had symptoms again, traditional stuff. Second cancer, 2007, barely 13 months after previously clear colonoscopy, I have no symptoms other than I go to donate blood and my iron count had dropped literally like a stone. They were going to give me a transfusion. I was still playing soccer, still running the business. Okay. So maybe I was more ashen, you know, white from being anemic, but it wasn't slowing me down. And I, and again, I had no blood. So that part set off a lot of alarms, uh, you know, in our head and in my GI doctors head, because, uh, as I like to say, I became an overachiever. then the second component, I get the, uh, I have the surgery, I get, you know, the, the blood work is sent off. Turns out I now have what everyone knew, or at least now they know this in 2007, which is Lynch syndrome. Okay. What the heck is Lynch syndrome and what does it mean? And that's where the third component comes in. 


Now, uh, I understand that as genetic.  And I also understand that this can be passed down to my children. Now I have three boys, not just Zach or oldest who was a year old when I had my first cancer. So we've got three and genetics is genetics. there's nothing you can do about it at this point and it either is or is not handed down. So that part was.


Disappointing, I guess is the right word because there's nothing you can do about it now. And knowing that you've potentially passed it on and mathematically with a 50-50 chance, is a distinct possibility more than one has inherited the mutation.


Sara Kavanaugh (10:06)

Yeah, yeah, for sure. So how did knowing it was hereditary? Did that change sort of your perspective? Obviously brought some answers to your family's, you know, cancer history. Did that provide some relief? did it raise more questions?


David Dubin (10:24)

It's both and it's like anything. We talk about this all the time, which is knowledge is power, right? So with knowledge comes a level of satisfaction, level of understanding that maybe I'm not just a broken down Pontiac, which is a car that doesn't exist anymore just for their listeners at home. So, and that this is something that was not your fault. It just was handed down. So from that standpoint, the level of knowledge was a comfort level. Also the level of knowledge that knowing you should have other types of diagnostic tests done in order to maintain your level of, what's the word I guess, not developing cancer, your screening ⁓ and having more things. That's also a good and also a bad. And you know, it's a comfort knowing that you should do these things. You have these steps in place, but also it creates a new level of Scanziety, which is a term I'm sure everyone's familiar with who's going to be listening, which is every time you go for that annual colonoscopy or upper endoscopy or cystoscopy or mammogram or CTs, chest, abdomen, pelvis, all these things that you go for, you now, you don't know what you're going to find when you show up. Again, as I like to say, was an overachiever 13 months clear to another stage two colon cancer.


very disappointing, also a level of understanding. And the fact that I'm still here allows me to feel pretty good about it.


Sara Kavanaugh (11:53)

So at that point, just bringing your family back into the conversation, because your family has pretty openly shared how you've approached family conversations, like talking to your boys. Obviously, this has been a part of their entire lives, watching you go through your surgeries and treatments and screenings, and then building your organization, which we'll get to in a few minutes, you know, take us through how you handled those conversations in the early days. And now they're adults, right? So what's changed and what insights can you provide to us from that family dynamic?


David Dubin (12:35)

You know, Robin and I have been very upfront with each other. We talk about a lot of things. We talk about a lot of things in front of the boys that is age appropriate. So as they've gotten older, as you alluded to, they've only known me as a survivor. And also at the same time, if most people, I think most people, I'm not going to say all, but if they were to look at my life and look at what I do on a regular basis,


It's not the type of story that someone would think this has a bad ending. I've maintained a level of activity that most people would attest to say that you're in good shape. So from that standpoint, they weren't afraid. Also, they knew that their grandfather and the lineage was okay. They would ask questions. We would answer them, again, age appropriately.


It was just something that we did. We never thought to do otherwise. And of course, when we launched the foundation and you start having all these public speaking roles and having similar to what we're doing today, having conversations with folks about Lynch syndrome, about the story, they're going to pick these things up. Kids are like sponges and we never felt like we should sugar coat it we should again be upfront of them, age appropriate. And they would ask, when should I get genetic testing? Will I get cancer? All the questions that kids ask and we would answer them the way we felt would be age appropriate, but also being very upfront that these are the statistics, these are the facts, this is what we know, this is what we don't know⁓ and it's, worked out. I will say, you know, back when, you know, they were younger, and I used to read to them at night and stuff like that, you know, stuff that you did as a, as a younger parent before they, you know, got older and were able to pick you up and bring you to bed at night. you know, it's certain things you never forget. 


And I remember, you know, my youngest or oldest when he was younger, you know, would ask me, you know, are you always going to be there for me? And you're like, oh God. And you're like, and I couldn't, I couldn't bring myself to answer incorrectly. I always felt like, I would say, you know, I don't know. And, and it, you know, as a parent, you're like, you always want to have, you want to be able to provide that level of comfort to your kids, especially when they're younger.  And we don't know the answers. And, and, you know, I could get in the car and the turnpike and get mowed down by somebody distracted driving. This is stuff that we faced. And, ⁓ yeah, I don't know. I threw that out there. I'm sorry.


Sara Kavanaugh (15:36)

No, I mean, it's the reality of being a parent and living with a high risk, you know, syndrome, right? 


David Dubin (15:44)

Yeah


And I agree, it's having these age appropriate conversations, you know, mine, as of today are eight and 12. And my oldest, my son is aware of my presence online and the podcast and doesn't quite get it and isn't sure what questions to ask. He's more interested in helping me like edit the podcast and create videos for me on TikTok. You know, I'm like, we're getting there, we'll get there. And I think that would be a really interesting way to keep him informed about what's going on.


David Dubin (16:20)

Do you think his getting involved with the editing and the production is his way of trying to understand it without appearing to try to understand it?


Sara Kavanaugh (16:25)

100%. Yeah, yeah, they are funny. But I appreciate it. Yeah, I think it'd be great just much like you've done with your boys, of getting them involved in this to understand what advocacy looks like from, you know, there's so many different ways you can be an advocate, you know, upfront or behind the scenes. 


So I want you I know one of your boys is involved in genetics. Fill me in on how your experience as a family has led your boys to somewhat get involved in this healthcare space. I think this is really fascinating.


David Dubin (17:13)

I guess so. I think it's pretty cool. So yeah, when, as they got older, they went to, you the boys went to college and the third one is still in college and they,


One, the oldest wasn't sure what he wanted to be when he grew up, but when he originally wanted to do video game design, okay, we didn't even know that was a major back in the day. So, you know, we're talking about a couple, about a dozen years ago. And when he came with us to one of the conferences, I think it was the National Society of Genetic Counseling. He said, this could be interesting. This could be my way of participating and understanding the field, also essentially making a career out of it. And those of us who are in this space know that the genetic counseling space typically does not have a lot of men. So from that standpoint, he felt like he would be the proverbial unicorn. But as it turns out, genetic counseling school, getting a master's in genetic counseling was not easy to get into. 


So when he was unable to get into the genetic counseling master's program, he did actually go for a master's in medical genetics and has turned that into a career as well in the genetic space. Not a genetic counselor, but in his role. He's not on the cancer side, he's on the prenatal side. So it's different, but it's still genetics and it's still pretty cool and it still tells a story and we're all just one big, set of mutations and, or not a big set, but we, we all have mutations. Just most of us don't know what they are. and the middle one who is negative, he works for a genetic testing company as well. And, but he's in software. so it's not the same, but again, yeah.


Sara Kavanaugh (18:54)

Yeah, yeah for sure that's fascinating.

Well, like I said, I mean, that that's all the behind the scenes, right? Still informing science and, you know, advocacy in a way in healthcare and improving people's lives. I think that's pretty, pretty phenomenal. 


Now, what is your youngest majoring in since he's still in school? 


David Dubin (19:24)

He's gonna change the world.


Sara Kavanaugh

Well, the youngest usually do. I'm the youngest in my family, so I'm there with you.


David Dubin

So was I.

I love talking to my youngest. We talk about everything. I will also say this, when the kids were younger, so we have a, where we are, have a K through eight school. So there was actually one year where all three boys were in the same school together, because each of them are four years apart. And I remember, and again, these are things you remember as you get older. Some of my fondest memories and ⁓ most vivid memories have been just walking with the boys to school in the morning and after school. And they would just talk about anything. Again, I do a lot more listening and they would just go at it. And I loved it. And we still do this to this day when the three of them get together, they just talk about everything. And I think it's great. I think they were very well-rounded. think they're...rounded and grounded, I guess. And we are comfortable having those conversations, having literally any conversation about just about anything without restrictions. Yeah.


Sara Kavanaugh (20:31)

Yeah, that's good.


David Dubin (20:34)

We'll see what he wants to be, I'm not sure.


Sara Kavanaugh (20:36)

Whatever it is, it's gonna be big. Yeah, it's good. Well, well done.


David Dubin (20:39)

Probably. I hope so. I'll take credit for it, guess. I'm pretty sure Robin had much more credit for getting them into the schools that she did, that they did than me. I'm not the brains of the outfit.


Sara Kavanaugh (20:52)

Yeah.


That's good. yeah, let's bring Robin into the conversation here now as we shift to talking about AliveandKickin, about your organization. I think, I don't know if it started out as this grand plan, it was a response to your diagnosis and being proactive and thinking, wow, we didn't find enough information out there for patients. And so we're filling in a gap. And clearly both of your life experiences led you to - we need to do something about this. 


So what can you speak to it a little bit more deeply about what problem you were trying to solve at the beginning. So this would have been around what tell me when that started, I guess what what time period was this after your second diagnosis that it just it clicked for you guys.


David Dubin (21:45)

It was actually after my third diagnosis, if you really want to do the math. So the, second colon cancer was 2007. We discovered the kidney tumor and had that removed in 2009. And it wasn't until 2011 that we got the nonprofit off the ground. The, the real story was, um, I felt so we have the get the Lynch syndrome diagnosis in 2007 and without really knowing much about Lynch syndrome, having been in the healthcare space, having had all these cancers, having had really some really good people around us and nobody talking about it, we wanted to do something different. We wanted to do something as you alluded to, fill a gap. But I really wasn't sure how, we had never started a nonprofit. So I actually pivoted some. And ran for public office. Unfortunately, I won. But thankfully I lost the second time. And that's when we started the nonprofit. But I also became a board member at a couple of other nonprofits close by, community blood services, the Bergen volunteer center. So the second diagnosis caused me to become more of an advocate overall. But again, it wasn't until 2011, after I did not win my reelection bid that we officially launched the nonprofit became a 501c3. And I would love to tell you that we knew what we were doing going into this, but we did not. We knew that there was a big, there was a gap, but at the same time, most of my advocacy space and the healthcare advocacy in the healthcare space was done on the, just as a colon cancer survivor. 


So we were kind of making this up as we go along. And, and really it wasn't until originally, if you saw this, but Dave's Not Dead Yet was going to be my idea for the name. And somehow Robin did not like that. And I'm not sure why. Maybe it didn't have as much longevity as Alive and Kick'n, but Alive and Kick'n seemed like a good name and we stuck with it. So yeah, we weren't really sure at the time. ⁓ And it really wasn't until we kind of launched, we launched a registry in like 2015 that we really started getting knee deep into the Lynch syndrome space. People were talking more about genetics than before. We did discover that there were more than us. There was more than us in the Lynch syndrome space. There were a couple of organizations that were trying to make a difference as well. None of us were huge. ⁓ None of us you would compare to let's say the breast cancer world or even the BRCA world, let alone the Lynch world. So we're still working towards things. The idea of the registry blossomed and we started it. Unfortunately, the way it worked out, it never turned into what it could have been because of nuances with the organization that was coordinating the registry. But when we launched living with Lynch about six years ago, as well as the podcast. That's really when things started taking off and it coincides with everything going on in the Lynch syndrome space with microsatellite instability, with immunotherapy, and dare I say it, ⁓ a vaccine that really is where we found our stride. That was a really short version of a long history, wasn't it?


Sara Kavanaugh (25:16)

Yeah. That's right. I think you've encapsulated it well to, yes, we knew there was a need to, wow, look at how far you guys have come in that time period, right? And I love that in part of your journey isn't just having practical information for folks creating an awareness and advocacy space, but


David Dubin (25:21)

Thank you.


Sara Kavanaugh (25:42)

on your show. And what you communicate out is bringing in those subject matter experts from the medical space, the healthcare space, the science space, I think is really fascinating. And that's what I love about listening to your podcast is you're bringing in these experts from all over the world, actually, which is pretty cool. And yeah, in in filling us in on what is happening in the Lynch space. So from that perspective, I think


David Dubin (26:03)

That's pretty cool.


Sara Kavanaugh (26:12)

You know, you've done a great job of not making it overly clinical and overwhelming, really making it relatable. And in a way that lets us know, boy, there's there's hope here, right from treatments and cures and just generally knowing your Lynch syndrome awareness can have such a huge impact. So did you ever imagine like, you know, how many people this work would reach, right - through your podcast, your advocacy, like, did you ever imagine that?


David Dubin (26:43)

I'll say actually I did. That's the interesting thing is when we started learning about the Lynch syndrome statistics, which has only gone up. So back in the day, so let's go with 2011, there were estimates that Lynch was affecting one in let's say 500 people nationally. And as time has gone on, that number, as you probably know, is somewhere closer to 1 in 300 or even I hear this number 1 in 279, which I find very, very, very specific. 1 in 279. All right. Well, you know, I feel like people can absorb 1 in 300 better than 1 in 279. So I kind of go with that, but for argument's sake, that ain't rare. So when we started learning more about the statistics,


Sara Kavanaugh (27:17)

It's epic.


David Dubin (27:33)

And again, you look at let's let's let's call it what it is. You look at my personality. Did I ever think I could reach that many people? I did. And I think it was a it was a lofty goal. But I do think it was one that was warranted. And it's one of those things that keeps me going and keeps us going is that knowing that every day when I have these kind of where I we you me when we have these conversations with anybody. I don't know about you, but typically the, the proverbial light bulb goes off in their mind and says, wait a minute, you're saying this. Should I get genetic testing? Maybe it runs in my family. I had never thought about all of these, all of your typical responses come out. And I would say that I feel a sense of, what's the word? You know, I feel like I've done my job, if you will, when somebody has those light bulb moments and starts thinking about something that they hadn't thought about previously, whatever that may be, especially in this case, Lynch syndrome. it's crazy to think about it, but I talk to a lot of people, like you said, nationally, internationally, clinical community, patient community, and you would be surprised, well, you wouldn't be, but I think many people would be surprised how many just don't think about it. And even those that should think about it haven't. Yeah.


Sara Kavanaugh (28:55)

Right.  Before we shift over to what's coming next, I want to talk about your living with Lynch. Is it a workshop? Fill me in on what it is and what the plans are for that for that program.


David Dubin (29:07)

Sure. So in case we didn't mention, so Robin, my wife is executive director of Alive and Kickin. you know, I guess that she's much smarter than me. And we've taken the approach of any, anything that we do, any events, et cetera, we, the, they are usually relatively low risk financially with reward. If if breakeven or, or generating a couple of funds. That's the way we approached everything and that's how it's worked out. 


So as you alluded to for the Living with Lynch opportunity, this was something that came about about seven years ago where we always wanted to get folks together in the Lynch syndrome space. couldn't, we just had not put the pieces together. just was, it was, again, it was, it wasn't easy and we needed the catalyst, if you will. So, we, Alive and Kick'n has a good relationship with not only in nonprofits in the Lynch interim space, but some of the nonprofits in the colon cancer space. 


So one of the organizations we have a very good relationship with is the colon cancer coalition. And they do these fundraising races called Get Your Rear in Gear. I had participated, a number of us had participated in them over the years. I, as much as I stopped playing soccer at 50, I can still run a 5k and I'll use the term run very loosely, 11 to 12 minute mile is not exactly running, but as a runner, can appreciate it. All that matters is how you look crossing the finish line. So get your rear end gear would do all these races nationally. And we came up with the idea of piggybacking onto their races in certain locations and creating this workshop around it, it was an application process. So we've all been to conferences where anyone can go and they have their space. You could have 50, 60, 100, 300, whatever the case may be. Those all have their world and we're completely fine with that. What we wanted was much more of an intimate process where you could engage patients and we'll explain what I mean by patients as well as clinicians and professionals in the space together and create that content together, create that level of community, make it small, make it intimate and get content on camera that can be used for education purposes afterwards. And that's really where we came up with the idea. you know, it's about, you know, maybe a dozen people. It is an application process. The first year we did it, we didn't have a lot of applications, which is fine and, as time has gone on, you know, we get the 50, 60 applications and narrow it down to what we consider to be a good cross-section of the Lynch syndrome community. So the Lynch syndrome community in this case, is, can be, obviously a survivor. That's easy. can be a pre-vivor, which we all know that term now, right? Unless I need to go through it. And then of course, people who are like caregivers, ⁓ who family members who don't necessarily have a mutation, but they're involved with the family for a number of reasons. And this cross-section can be different ages, different mutations, different cancers, obviously genders, but also different ethnicities, because we want to make sure that the messages across that this mutation can, these mutations can be really anywhere.


It's not just Caucasian, not just men, and it's not just older. So that's really why we wanted to do that. And it's really taken on a life of its own. A number of folks have looked forward to it. We've gotten the questions about, I come back again next year? To this point, we've been fortunate enough that we've had enough people who apply that we're still going through the original groups. We do feel bad that we can't have everybody something we cover the costs, travel. And because of that, we still can't take everybody, obviously.


Sara Kavanaugh (33:09)

Mm hmm. Yeah. Now I think that's phenomenal. I love the intimate setting, you're going to accomplish so much more for the folks that are attending by having that more intimate conversation space. Yeah.


David Dubin (33:22)

Right, we didn't want it to be talking to them, we wanted it be talking with them.


Sara Kavanaugh (33:26)

Mm hmm. So you highlight the videos of the folks that you interviewed during these workshops and you have several of them on the website, right? Do you want to fill us in on that part of the project?


David Dubin (33:43)

Well, essentially a microsite has been created to have all the content. part of the, part of the role, if you will, of applying for this is, the agreement that this is can be created. and, and it's really well done. ⁓ again, I don't, I'm, I'm, taking credit for work. That's not mine. So, Robin really coordinates a lot of this and most of it. And we've been able to turn it into some pretty powerful videos. And they tell a story that just can't be the same from me. Again, I've had the good outcomes. I am a white male and my story continues to resonate, but their stories are so much more powerful.


Sara Kavanaugh (34:24)

Yeah, no, that's awesome. I think it's important.


David Dubin (34:27)

Did any stand out from you that from your perspective? I'm not sure how much you were able to peruse, but some of them are just profound.


Sara Kavanaugh (34:36)

Yeah, yeah, I think I appreciate the fact that you have a cross section of experiences and where they are at in their journey. And again, much like you said that global touch, right that informs people that this can affect anyone at any point in their life and whether they're one that received the diagnosis or their family member is being impacted. So I think you've done a wonderful job. And I agree the quality is, is fantastic. And it just shows the investment that you're making in communicating this out in really effective way. So


David Dubin (35:14)

It still bothers me to see how many people get, what's the word, they don't get taken seriously. They just get pushed to the side. Marginalized, I guess is the right word.


And I've never had that. I've never had to face that. And it's something I don't take for granted, but I think it's unfortunate and I think it's what's been over time.


Sara Kavanaugh (35:32)

Yeah.


Okay, so you've been in this space for a long time. so what makes you feel encouraged right now?


David Dubin (35:45)

Hmm. Thank you.


Sara Kavanaugh (35:49)

I mean, you're deep into this space. You have insights that many of us don't have insights into. So what is encouraging you right now?


David Dubin (35:51)

Hmm.


The Lynch syndrome space specifically is very encouraging. I feel that we're at a point that as you you asked the question about, did I ever imagine, I didn't imagine this. And it really wasn't until we got knee deep into it that we started to see it. The level of interest.


in those with Lynch syndrome, the level of interest in microsatellite instability, the level of interest in immunotherapy and the level of interest in potential prevention through vaccination, aspirin trials, et cetera. I will say that if ever there was a good time to have Lynch syndrome is today and I'll say the same thing tomorrow. So from that standpoint, I feel very good about where this is going from a trajectory standpoint.


Sara Kavanaugh (36:48)

Mm-hmm.


David Dubin (36:48)

⁓ yeah. ⁓ and like you said, I see it pretty much every day.


Sara Kavanaugh (36:54)

Yeah, so you've mentioned a few specific things that are happening that are encouraging in the Lynch syndrome space. So you talked about


David Dubin (37:03)

Mm-hmm.


Sara Kavanaugh (37:05)

know, we know about immunotherapy ⁓ in terms of, you know, treatment if you are diagnosed with a cancer, if you have a cancer diagnosis. Talk to us about some of the other things that maybe people aren't as well educated on, Can you fill us in on what is encouraging about those two aspects of having Lynch syndrome?


David Dubin (37:24)

Well, microsatellite instability has been around, actually several decades. I joke that I used to have it on the back of my soccer uniform. That was my nickname in college was microsatellite instability, which is actually not true. But that being said, so we all are made up of genetics. Our cancers are also made up of genetics and some of those are germline like MLH 1


et cetera, but also some of them are specific somatic mutations. The hallmark of most Lynch syndrome patients is that the tumors that we create are what are considered microsatellite instable high, MSI high. And over the last several years, immunotherapies have been created and are geared specifically towards patients who have MSI high tumors to the point where


Uh, don't know if you heard the podcast where I interviewed, um, uh, Luis Diaz from MSK looking at potentially taking Micro satellite stable tumors and trying to make them hot, if you will, to become microsatellite in stable tumors so they can be treated with immunotherapy. I'm sorry. That's cool. So, uh, right. It's not happening yet, but these are the type of things that are happening. So if you have, if, if, if you know your.


Sara Kavanaugh (38:28)

Mm.


Wow, that is cool.


David Dubin (38:45)

genetics, hopefully before you get cancer, or at least if you know, you get to know your genetics after you have cancer as well. It allows you to treat your, to be treated a certain way. Is it going to, is it a hundred percent guarantee? Of course not that that there is, there are, there are no 100 % but are the percentages good? Yeah. And are they getting better? Yeah. I don't like to use the term miracle.


because that's just not my style, but we've seen patients with stage four, those Lynch patients who had stage four cancers who have been treated with immunotherapy and have had complete responses in weeks. So yeah, and it's the best example I can give. It's pretty good.


Sara Kavanaugh (39:29)

Yeah, that's great. Where could people find more information if they want to geek out on some of this, you know, the science and the research that's being done behind this? Do you have a resource that you'd recommend or is that information available on your website?


David Dubin (39:44)

It's on the website. It's also a number of Lynch syndrome centers have opened. And I think it's great that we're now seeing specific cancer centers, cancer centers specifically treating Lynch patients in a more whole entity. So a lot of the information is there as well. Some of the names you would recognize, but there's a lot of good information and I haven't seen a whole lot of bad information yet.


but that's probably just a matter of time.


Sara Kavanaugh (40:12)

Yeah, well that leads me to my next question. ⁓ Where do you think conversations around Lynch syndrome, where do we need to do more work? Where do think there's?


David Dubin (40:15)

Hmm.


It still starts with knowing your family history. I back it. So electronic medical records is a new facet. It's only been around maybe 20 years. And again, for me, that's not a long time. It wasn't until then that documentation of illnesses was still paper. To an extent it's still paper, but also pen. And if you know, physicians are known for their, you know, their penmanship, similar to mine, which is you can't read anything and I'm lefty. So it wasn't up until recently. People just died of stomach aches, right? I mean, this is just that this was the documentation and I'm not negative about it. This is just the reality of it when you just didn't know and you don't know, and then you write down whatever you do know. And hopefully that's correct. Okay. Nowadays things are much more streamlined, much more organized, hopefully, I'll say. So from that standpoint, I think you're going to see a lot more data being created, a lot more data being cultivated from these large language models that are going to be able to hover over and pull keywords and really create some stratified results from it. And I think we're going to see a lot of progress in that capacity. I don't even remember if I answered your question. Did I?


Sara Kavanaugh (41:49)

Yeah, the question was what work still needs to be done in this space? And you mentioned the genetic testing. And I think if if I were to bring your comment full circle around genetic testing and AI, I think there's an opportunity for sort of creating that algorithm that's going to inform physicians to say there's some red flags here.

 

Obviously, there's some things around family history and symptoms, but there may be other things that we're going to find over time that should give you that calculation, if you will. And I know that's being done with genetic testing companies, for instance, you know, JScreen, you know, when you go through their intake process, they ask you all these questions, you fill in your family history, and then it will tell you, you're probably not going to qualify for insurance coverage, because it's based, it's giving you basically a score.


David Dubin (42:10)

Yes.


Mm-hmm.


Sara Kavanaugh (42:38)

I don't know what that score is called. Maybe you know what that is, but they will tell you if you fall in line with whether you qualify for coverage or not. So I think AI is going to help. Yeah.


David Dubin (42:49)

don't know it's called a score, but there's


criteria for insurance coverage, Amsterdam or Bethesda criteria. Those have been around a long time. But as you alluded to, so again, go back in the day, 2007, when I had my genetic testing done, the EOB, the cost of my insurance was $25,000. And there were only, let's say, five genes on my panels, right? So now you fast forward to today. Let's just, let's just blow through time. That same, uh, test is now going to be 50, 60, 70 genes, 30, whatever, whatever the number is, you know, a massive panel and the cost is going to be $250. So that's the beauty of technology is that it, uh, some of these, some of the testing modalities have become so inexpensive and relatively routine that sometimes it's better or more cost effective, I guess is the right word, to actually pay cash as opposed to go through your insurance company where you may have a co-payment of more than $250. So this is the type of scenario that has come about, which I think is a good thing.


Sara Kavanaugh (43:59)

Yeah, yeah, for sure. I think the accessibility piece has improved. There's still work to be done there.


David Dubin (44:06)

Right, because if you do your family history and you don't know everything, you're no longer, you may not meet criteria for insurance. But if you say, I think you can go through that process and, and still get what you may need.


Sara Kavanaugh (44:21)

Yeah. Okay, now we're approaching Lynch syndrome day on March 22. So this episode will be posted before that. What is something you want people to understand about Lynch syndrome day What is something you want people to understand patients and not patients alike?


David Dubin (44:40)

Well, if you've known me through history, you know that I'm not big on days. don't, you know, we're not big on anniversaries, birthdays, things like that. That's never been our nature because to us, it's another day. But that all being said, I would like to see more awareness about Lynch syndrome. I would like to see more people have an interest in knowing their family history. I'd like to see more people who are potentially looking at Lynch syndrome as something that may run in their family and look to get genetic testing if it's warranted. And of course, seeing someone in the clinical space who understands this and can help them in this, we'll call it a journey, whatever it may turn into. And that's what I would want from, let's say, Syndrome Awareness Day, which for me is pretty much every day.


Sara Kavanaugh (45:26)

Yeah, yeah, absolutely. And we appreciate that about you. 


David Dubin (45:29)

Thank you. Do you have something that you would want to say or have on Lynch Syndrome? I'm putting it back on you.


Sara Kavanaugh (45:40)

So if somebody's new, ⁓ I mean, yeah, I think I'm aligned with you, I could see both perspectives, right? This is something we deal with every day. We're in this space, but I think it also gives, as somebody who works in the creative marketing space, it gives us a platform to create awareness. And so we are unified in our messaging around Lynch syndrome, whether it be creating Lynch syndrome days around the country. you know, a lot of times like a city will, you know, a city will dictate a day right in their community and you get a big plaque and all these things that say today is Lynch syndrome day in Nolensville, Tennessee. Right. So not that I'm doing something like that, but those are examples of things that happen on days like today. And if it can bring a community together to bring awareness, you know, in a small way, then I'm all for it. So I think it's fun to see the opportunities that people are going to bring Lynch syndrome day to the forefront. And I think putting this package together of resources and experts on Lynch syndrome going into this will help further amplify that exercise. 


 All right, well, so for someone who is newly diagnosed, what do you want them to hear from you?…it may be if it's a Lynch syndrome diagnosis or they've learned they have a genetic mutation, you are a survivor as well. You could speak to it from that perspective, but what encouragement would you give to people that are maybe new to this space?


David Dubin (47:05)

The first answer is it's not a death sentence. So that's the first component. Let's get past that. The second component is, let's say we're talking about if it's a mutation, it does not guarantee you will get cancer. The percentages are not 100%. So let's get that out of the way. The second component, if it is cancer, depending upon where it is as far as staging and what type of mutation you may have, it's a good time to be treated if ever there was one. So from that standpoint, the more you know, the better your opportunity is for treating it and living a very long, productive life.


Sara Kavanaugh (47:49)

Yeah, awesome. So how can listeners connect with you and even support Alive and Kickin?


David Dubin (47:58)

The website is the best place to start. it is aliveandKick'n.org. ALIVE, A N D K I C K N.org. ING was taken. So, that is us. And that is where you'd be able to see resources, watch the videos, reach out, get involved. that's probably the best way to do it. Do have  an Instagram, account for that as well.


Sara Kavanaugh (48:22)

Yeah. Okay, and if people want to support alive and Kick'n also go to the website.


David Dubin (48:28)

They can, they can, I mean, they can volunteer time. can donate. They can get involved with some of the events. We've had a number of runners, in the New York city marathon, and the New York city half marathon. And of course we will have the application process for the next Living with Lynch so that it goes up every year. And yeah, that's where you find everything.


Sara Kavanaugh (48:47)

Awesome. Well done. Thank you.


David Dubin (48:49)

And thank you for having me and thank you for doing what you do.


Sara Kavanaugh (48:53)

you. Perfect. Thank you. All right. So David, thank you for having this important conversation. And most importantly, thank you for showing up in this space. Like I mentioned at the top of the show, you were one of the first people I encountered and just gave me a lot of hope and helped me dig into a little bit more about what I was facing. And I think you said earlier, knowledge is power. And you hear that a lot in our space, but I don't think we can emphasize enough just how important it is to learn about living with a genetic mutation. And so starting at organizations like alive and Kick'n is really a great place to start.


Again, if you want to learn more about David's work and the Alive and Kick'n community, go to aliveandKick'n.org. I will have the links in the show notes and on the blog. And then of course, listen to the podcast. I think you're on pretty much every platform available, but listen to Alive and Kick'n podcast wherever you listen. If this episode resonated with you, please consider sharing it, especially as we go into Lynch syndrome day on March 22. But as David said, this is this is every day of the year encounter. So feel free to pass it along to anyone that would be need some encouragement. 


As always, you'll find the Positive Gene podcast wherever you listen. Follow along on social media. And that would be on Instagram @ Positive Gene podcast.


And yeah, make sure you subscribe on the website so you don't miss any upcoming episodes, especially in this Lynch Syndrome series. So thank you for being here and we'll see you next time. 


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