Global Lyme Alliance with Scott Santarella

Global Lyme Alliance CEO Scott
Scott Santarella, CEO of Global Lyme Alliance

Scott Santarella, CEO of Global Lyme Alliance

Global Lyme Alliance CEO Scott Sanatarella joins us on the Lyme360+ podcast to discuss his journey, work with the organization, and his advice for Lyme warriors and their support system,

Chronic Lyme can be a lonely disease. No one seems to understand what you are going through, it is debilitating, hard to diagnose, and treatments are not covered by insurance. I can’t even tell you how many hospitals and doctors told me I was crazy. All of my tests would come back normal, yet I couldn’t breathe, and I had a lump on my chest that appeared overnight. Many doctors don’t believe that chronic Lyme exists, and the federal government barely acknowledges it or funds any research.

I want you to know that you are not alone and people are fighting for you.

Find Scott Santarella and GLA:

Global Lyme Alliance is the leading nonprofit dedicated to conquering Lyme and other tick-borne diseases through funding innovative research, offering effective education and awareness programs, and advancing treatments towards an eventual cure.

I have been using GLA for years to find doctors, research, clinical trials, and even to connect with other Lyme warriors. I was so grateful when Scott Santarella, CEO of Global Lyme Alliance since 2016, agreed to come on the Heal podcast. Scott directs overall strategy operations and fundraising for GLA.

The GLA has partnered with Lyme doctors and private institutions to push research and clinical trials forward. Their primary source of funding comes from individual donors and foundations. Global Lyme Alliance events range from our signature galas, experiential events, charity endurance programs, sporting events, and grassroots initiatives. There is an opportunity for everyone—to sponsor, attend, organize, host, or donate—to help GLA create real change in the battle against Lyme disease.

The Global Lyme Alliance just launched their peer to peer mentoring program, which matches patients to peer mentors that are there to help them get through those tough times. Every single one of GLA’s board members has either had Lyme disease or their family members have been touched by Lyme disease or both. So you have people that are incredibly passionate about making a difference, and they understand what people go through that need help in this disease in all stages, the acute phase, the chronic phase, and the neurological craziness phase.

They have also partnered with over 150 camps to educate the camp counselors about being tick aware, making their camps safe, putting the signs out, making sure that kids are checking themselves, and what to do if they find a tick on themselves or a camper. This program helps raise awareness and prevent Lyme disease.

The resources I have listed above are only touching the surface of all that the Global Lyme Alliance has to offer. I would recommend checking out their website and listening to my podcast with Scott to learn more.

Let’s heal together!

xx, Mimi

Global Lyme Alliance is the leading nonprofit dedicated to conquering Lyme and other tick-borne diseases through funding innovative research, offering effective education and awareness programs, and advancing, through science and data, reliable diagnosis, treatment, prevention, and an eventual cure.

Today our special guest on the Heal podcast is Global Lyme Alliance CEO, Scott Santarella. Scott gives us the inside scoop on the latest research and resources GLA has to offer. I have been using GLA as a resource for years to find doctors, research, clinical trials, and even to connect with other Lyme warriors. Listen to the podcast and go to to learn more!

Hi, welcome to the Heal podcast. Today’s guest is Scott Santarella from Global Lyme Alliance. Thank you so much for coming on today, Scott. We are so grateful for your time, and I also want to thank my friend Tara Vessels for introducing Scott to me. Global Lyme Alliance has awarded nearly $12 million for Lyme and tick borne disease research to date. Funded projects have led to unprecedented advances in such areas as prevention, diagnosis, and treatment of tick borne illnesses. GLA has forged significant partnerships with the academic community that supports research, most notably the organization partnered in 2007 with the Lyme Disease Association to fund and create the first research center for the study of persistent Lyme at Columbia University Medical Center in New York city.

Mimi (00:53):

Scott also assumed the role of Chief Executive Officer of Global Lyme Alliance in May, 2016. As CEO, he has the leading private nonprofit organization dedicated to Lyme and tick borne research and education. Scott directs overall strategy operations and fundraising to increase awareness and hasten advances in diagnostics and treatments with the ultimate goal of finding a cure for Lyme and tick borne diseases. Thank you so much, Scott for coming. We’re very excited to speak with you.

Scott (01:23):

Thank you for having me. I’m glad to be here.

Mimi (01:25):

So let’s get started and begin with you touching on the exciting things that Global Lyme Alliance is doing for Lyme research today.

Scott (01:33):

Sure. So we, um, you know, we’re an organization that was founded on trying to understand the challenges associated with Lyme and other tick borne illnesses. And how do we apply, you know, innovative and, um, novel technology, science and medicine to try to help people that are the most sick. Um, all of us know that, uh, for the most part, if you get bit by a tick, you catch it early, you get on antibiotics. You usually have a pretty good chance of, of living a normal life, but there is that 25 to 30% who regardless of the treatment they get, they get sick and stay sick for a long time. And there’s a lot of debate around why that happens. And then certainly there are people who don’t even know they were bit by a tick and never fear, well, and spend years and years trying to find what’s wrong with them. And they end up finding their way to a Lyme disease diagnosis. And so, um, what we try to do based on the constituency that I think we serve the most are those that are, are the, that are suffering the most. Um, those that are dealing with the persister or chronic form of the disease. Um, however you want to sort of categorize it. And, um, we’re always kind of interested in learning about what the Lyme literate doctors are doing in the clinical setting out in the, in the community. Um, because Lyme disease is very much a disease that, um, doesn’t have a lot of institutional support behind it, like you would in cancer or diabetes or MS. And some of these other diseases. So, um, there’s been a lot of, a lot of excitement around Disulfiram, as you probably know. And we’ve spent some time, I’m trying to understand the work that was done early on by some researchers at Stanford university, as well as Dr. Ken Liegner, who’s a Lyme treating physician in New York state. And through our relationship with Brian Fallon at Columbia university, we initiated and supported the Disulfiram a treatment study that Brian has, uh, has begun to try to understand, understand the efficacy of the drug. You know, it’s an approved FDA drug that was used for alcoholism, um, but it has some side effects and we don’t really understand its mechanism of action. So it’s really important, I think in this environment, especially with COVID being, so, uh, COVID-19 being such on the forefront everyone’s mind is to really understand how these drugs work and you have to do sort of patient studies and human studies to figure that stuff out. And so, um, we’re supporting a, an effort by Brian to, um, to test patients on this drug to see how well they’re doing. Um, if it’s having the efficacy that, that we believe it will have and why, and understanding why it could be really important, because we may find out that certain people will do really well on a drug and certain people won’t. And why won’t they, is it because they have co-infections? Is it because they have genetic deficiencies, um, are they more immunocompromised in another patient? So that’s a lot of the exciting sort of things that we try to figure out as we invest in some of the research that we do. Um, the other area that we spend quite a bit of time on, uh, with, uh, diagnostic tools, we all know that, um, you know, diagnosis is absolutely essential, proper and accurate diagnoses is essential. There are a lot of options out there. Um, they’re not always as accurate and as, as concrete, I think, as we would want them to be. And quite frankly, as I think Lyme patients deserve. Um, and to that end, uh, one of the areas that we’ve tried to focus on is more direct tests, less of the antibody based tests and more of a direct type of blood tests. And one of the, um, one of the initiatives that we’re working on is with a, a small biotech company called Ionica Sciences. Uh, we invested in their, in their technology, um, and their platform, uh, to try and have a more direct test in understanding whether people have Lyme disease, not just on the acute stage when they’re first diagnosed, but what about those people that are still sick? Can we find the bacteria in their bodies through more of a direct test versus the antibody tests that don’t always show that? And so, um, we’ve partnered with Ionica. Uh, we also played matchmaker with Ionica and Dr. Lisa Bartnikas at Boston Children’s, she’s allowing them and sharing with them, some of her bio, um, repository samples, so that we can test this against, you know, real life patient samples and accurate, and well curated patient blood samples, um, to see how effective the test can be. Um, which is important because it’s not just about the accuracy of the test, it’s just about the specificity. Right. And the sensitivity and we’re seeing that in COVID-19 right now, how important it is to have the right type of test. Right. And how can you get the test out to the masses as quickly as possible? Um, it’s funny because there’s so many parallels between COVID-19 and Lyme disease, um, and the testing is one of them, right. And everybody in the Lyme community is just like, we’re pulling our hair out because it’s just like, really you’re having this problem?! We’ve been dealing with it 30 years on people, you know, let’s get, let’s get our act together. So, um, the other thing that we’re doing that’s exciting on, uh, on the research side is another clinical study that we’re doing with Dr. Joseph Jemsek, that’s based in DC, where we’re taking the treatment protocol that he’s created, and we’re actually testing the protocol, his actually treatment pathway against scientific measurements. Right. So we’re trying to understand in how he treats patients that do really well. What’s actually changing in their body. That’s allowing them to feel better and actually making them in some instances, maybe he’s curing them. We don’t know that for sure, but there’s anecdotal evidence that he’s able to get people from a, you know, a baseline of feeling miserable to a baseline of feeling like 80, 90, almost 100% from how they used to feel prior to them having a Lyme or a tick borne illness. And so, um, we’ve invested quite a bit of effort into a study. That’s going to be about 25 patients where we’re going to match, um, uh, the patient’s taking their blood samples and tissue samples over a 18 month period every three months. And we’re going to try to understand what’s changing in the sample each of those three months, that we’re collecting it to get a better sense of why the treatment pathway works, or maybe why it’s not working. And what are the indicators, what are the, you know, the upticks in immune suppression, what are the, uh, inflammation indicators from a scientific perspective that we can identify to better understand why that treatment works? And through that, is there a subset of patients that respond better to that treatment than others? And then that it’s going to open up the debate. Well, why do they respond better? Do they only have Lyme. Do they have, you know, Lyme with Babesia? Do they have Lyme with urikerosis? So, um, again, it’s, it’s really kind of novel, experimental type of research that we take some risk on, right? There’s some risk involved because we may not find out anything, but it’s really important to take the anecdotal, um, positive news that’s out there and tie science to it. And when you do that, the larger healthcare community, larger medical community will then begin to believe and understand that there’s science behind the anecdotal evidence. Hey, this is a treatment that works, and this is a treatment that others can actually practice. And that’s kind of the pathway that we’re trying to, to, um, proceed down when we invest the dollars that we get from so many generous people, which is a little different than just kind of always testing mice or always looking at things in a petri dish, right. We’re trying to really move that, that paradigm from sort of the, the mouse model to testing and humans in a very careful setting. And in this particular study that we’re doing with Dr. Jemsek, it’s being run by a clinical management team, and we’ve done a tremendous amount of, of legal work to make sure that all of the steps we’re taking are the most scientifically and acceptable practices that are out there in the, in the general medical population, not just in the Lyme world. So some real exciting stuff that we hope will, will prove some fruitfulness sometime, you know, within the next year, year and a half.

Mimi (10:28):

This is exciting. I I’ve heard great things about the Jemsek Institute. I actually was gonna go there when I was in the thick of my Lyme recovery. So you have so many great different studies going on. How do you find these studies and then how do you decide which ones to invest in?

Scott (10:46):

That’s great question. Um, we’ve been blessed as an organization to be able to afford and have on staff two PhDs, Dr. Tim Sellati and Dr. Mayla Hsu who are PhDs. Tim has a tremendous amount of experience, 20 plus years in the Lyme disease and tick borne illness world. Mayla has been working at GLA for the last four and a half, almost five years, but she comes from an HIV AIDS background. So another infectious disease background and the combination of the two of them, um, and their knowledge and experience and their breadth of sort of understanding of disease in general has really helped benefit GLA in a lot of its decision making in terms of how do we actually find projects to fund and how do we understand whether those projects or those research efforts are legitimate and viable. And their knowledge allows us to kind of filter through a variety of different proposals and things that we take on. And then they segment out those proposals based on our overall, we try to categorize them into buckets of, um, you know, diagnostic, buckets of novel therapies, buckets of items for mental incapacity and some of the neurological issues that patients deal with. Um, and then we actually have a scientific advisory board that we’ve sort of put together over the last seven to 10 years of some of the most brilliant, um, scientific minds, not just in Lyme disease, but in immunotherapy, in bacteriology, in viruses, in a variety of different science and medicine based expertise that allow us to have a tremendous amount of, um, knowledge and credibility in evaluating the proposals that we receive. And then we use the NIH evaluation process. So it’s a, it’s a one to nine scoring system where one is a really good score. Nine is really bad score. We use a blinded review process. So we have three scientific minds review each proposal. They each score it separately. And then we have a system, an automated sort of evaluation system that we filter all the information through. And it comes out with a score. Then once we have the score, we bring those three reviewers together, and we have them talk about, you know, why there might be some discrepancies in their rankings, or if they’re all on the same page, what are the things that we can do to either get the grant approved by our board of directors? Or what are the things we need to do to go back to that scientist or that research and say, Hey, you’re just not at that level. How can we help you provide a better proposal, do better science? So it’s a really interactive process that I think is unique. And one where we really rely on our scientific advisory board and I can’t thank them enough. They volunteer their time and they give us, you know, quite a bit of their energy to review these proposals. And I feel like when we get to a point that we’re funding something, um, you know, I hate to use this term, but we make really good bets. We’ve done a lot of our due diligence. So the donor dollars, we’re being really good stewards of donor dollars and how we invest those, um, those harder and donations, because we want to make sure we have the impact at the end of the day. So it’s a really exciting, and I think a very unique way that we do things and it very stringent process. So, um, you know, there’s no, um, there’s like, there’s no nepotism, there’s no favoritism. It’s, it’s very much a cut and dry black and white process. That’s not always a fun process to go through because it can be very harsh. Um, but at the end of the day, our goal is to do what’s best for patients. And we only want to be funding things that we think are really going to have that impact on their lives, especially the ones that are most sick.

Mimi (14:54):

It’s really nice to hear the specifics about how you do your, your work. And I’m just backtracking a little bit. I have a two part question. First of all, do you have any personal experience with Lyme disease and second, can you just tell us about any trends or significant changes that GLA has seen since its beginning, since it started?

Scott (15:20):

So I don’t have any direct personal experience knock on wood. I did have a friend of mine who was bit by a tick twice, and I knew him adult life for 20 plus years. We would vacation together on Block Island, which is a small island off the coast of Rhode Island, which is, you know, tick central in the Northeast. And he was bitten twice out there on his calf at two different times. Unfortunately, he actually ended up passing away from a really rare form of stomach cancer at a very early age. He was 43 years old and I never really made a connection between, you know, Lyme disease and cancer. And I don’t know that there’s a scientific connection there, but one of the things I witnessed as I went back and thought about his sort of, um, journey through his cancer was his immune system was just, was just riddled with inefficiency and just inability to fight off any type of infection. And the more that I learned about Lyme disease, the more I came to realize that, wow, I think there might be a connection between this, you know, this immune issue that so many people have with Lyme disease and how it impacts other diseases, cancer being one, and MS, and celiac disease. There’s a whole host of them that we know. Um, and so as I became, became interested in that process and the global Lyme Alliance approached me, I was very much intrigued by, um, what I would call sort of the, um, the stigmatization that’s associated with Lyme disease in their patients. And I’m a big believer in being a fighter for injustice. And there’s no bigger injustice in the disease world than Lyme disease and tick borne illness. And so the combination of those things has been really passionate about what I do. Um, and you know, I, in some ways, I think it’s a good thing that I don’t have that personal connection to it because I can kind of take the emotion out of some of the decision making we have to make, but I feel so much for those people who suffer because we deal with them all the time and every day, and they inspire all of us at the GLA because they’re so resilient and they’re, and they’re not giving up and the ones that do give up make me the saddest. So, um, while it’s not a direct connection, I feel like I know, um, as much as I can know about having the disease based on all the great people that I’ve met through it, um, and I never want to have a disease. And living here in Connecticut, I’m surprised I haven’t. I was landscaping when I was younger working my way through college and things like that. But I feel fortunate and because I feel so fortunate, I feel like I really should be giving back and what I do. And so that’s what drives me, um, in terms of, you know, changes that we’ve seen, you know, I’ve been doing this for five years now, almost. I think this is the beginning of my fifth year. And what’s really kind of interesting to me is there’s been a great understanding or a much better understanding I think about the disease, not so much in terms of what the disease does to a human, um, when they contract it and when they have the persister or chronic form of the disease, but what else happens within the body that just doesn’t seem to be able to get fixed. And I don’t know if that’s the, you know, the immune suppression that happens. I don’t know if it’s the co-infections. I think those are all the things that we’re trying to understand, but I think what’s happening in this disease right now is people are starting to recognize that, you know, although it’s a bacteria and although antibiotics are always what we want to go to, I think we’re understanding that we’ve kind of looked beyond antibiotics for care. We’ve got to look at other things like Disulfiram and are there other, um, other, uh, you know, FDA approved drugs that we can look at? Are there other types of methods of treatment that we can look at, ozone therapy, for instance, you know, are there alternative therapies out there that we could use in combination with some of the more traditional therapies that are there? Um, I come from a cancer research fundraising background and in the cancer world, it’s combination therapy. There’s no magic bullets, right. You know, when you shut off one switch and a cancer cell, another switch turns on, so it can survive cancer smart. Well, for such a simple organism, I kind of feel like borrelia and Babesia, and these other bacterias are really smart, too. They know how to survive or they can survive for some reason, sometimes intimate for many, many years. So it’s, how do we unlock some of the science and what has been learned in other diseases and bring that into Lyme disease. And I feel like we’re starting to make that push and that is what has me really excited. Cause I think that’s going to open up options for improved treatment options for patients and opportunities for better treatment options. And I think that’s what patients want, right? Patients try everything under the sun, cause you’re just desperate to feel better and they deserve to feel better. We’ve got to do a better job as an organization. And I think as a community, especially the science community, it’s bringing more and effective treatments to patients. And it’s that kind of mindset that I think is starting to shift a little bit. And that’s exciting. The other area is obviously in testing, you know, there’s some real great technology out there, both, you know, um, visual and graphic technology, as well as direct testing, direct blood testing technology that we’re not using in Lyme disease yet that I think we can start to use in the next 18 months to two years. Um, because I think we all know this, the sooner you can diagnose the disease, um, the more that we know, whether people still have a disease or not, those are all crucial questions that need to be answered. And that’s only going to come from a really, really accurate test. And I think that’s starting to change a little bit too where, you know, the antibiotic test, the any antibody response tests while it’s great, you know, it’s just not working as well as we need to. And we’ve got to really push ourselves to find something better.

Mimi (21:24):

That’s true. So when I was listening to your personal story with Lyme, um, I definitely hit an emotional cord for me because you know, having Lyme and I think Chronic Lyme along with a lot of other patients, it’s a lonely disease. And I can’t tell you how many hospitals I went to that said I was crazy. And they, instead of saying, there’s nothing wrong with you. Meanwhile, I can’t breathe, I have a lump on my chest. And they tell me all your, you know, results came back totally normal. And here here’s the list of psychiatrists to go to, right? I mean a lot of hospitals did that. A lot of doctors feel like it doesn’t exist. Now I heard recently that the federal government has allotted a small amount of money towards research, but why is this the case? I mean, I don’t know. Maybe you don’t know, but maybe, um, you can touch on what you know of like why the insurance companies don’t even cover my antibiotics here. I am taking antibiotics and t’s not even being covered nor, you know, you know, the medical community and now like the government really doesn’t acknowledge it. So what, what’s the missing piece?

Scott (22:28):

Yeah. It’s, I think it’s a really good question. It’s a question we’re asked all the time. You know, I don’t know that I have the full answer. I can give you sort of a philosophical sort of viewpoint, which is, and, you know, there’s so much controversy surrounding the disease and the diseases, I’ll say diseases because it’s beyond line, right? The co-infections as well. There’s so much controversy around the understanding of all that. Um, I think that, um, we haven’t been able to identify through more scientific evidence-based methods, a way to sort of convince the larger healthcare community and the larger insurance community, that this is a real issue we’ve made inroads in small steps. And I think some of the work that’s being done now on the policy side, which you mentioned early on and in the part of your question is really important to get the government behind it, but where I’ve seen change in diseases. And I’m talking about, you know, multiple myeloma, which is a blood cancer, um, you know, cystic fibrosis, um, Parkinson’s with Michael J. Fox Foundation, where you see real huge paradigm shifts in how diseases are treated aren’t necessarily on the reliance of government. Although eventually you want government to play a role in approving therapies and putting money behind large clinical trials that need to happen. Um, but you’ve got to find sort of partnerships in the institutional and academic world. You’ve got to find partnerships in the industry and the pharmaceutical world, which I know a lot of people don’t like to hear that. And then you have to find partnerships with doctors. And so you have to kind of bridge all of those, um, those parties that are kind of working in silos and get them all to work together. So I think, um, be able to shift the shape of this disease to one where it’s going to be more accepted. And the only way you can get it more accepted is by taking some of the work that’s being done at the clinical level. And when I say clinical level, I mean, the line treating doctors, the doctors that are willing to treat a Lyme patient, that aren’t telling you that you’re crazy, that understand that you’ve got some underlying issues from a tick bite, and they want to try to help you is helping those doctors really prove out how they’re treating patients and how they’re helping them. Because I do think there’s doctors out there at the primary care level that want to treat Lyme patients and tick borne illness illnesses, but they don’t know how to. And then that gets into like CME programming clinic, continuing medical education. How do you treat the patient and the doctor population? How do you educate the doctor population? How do you get to those MDs that maybe want to treat patients, but are just a little bit afraid to, and that’s kind of where, you know, a lot of our work that we do on the programming and the patient services side comes into play, because it’s not just about funding research, you’ve got to take what you learn and share it. Right? And that’s kind of the other piece of what we do. I think really well, awareness wise, obviously through social media and our platforms, but also through our educational and our content materials that we’re trying to educate, not just our own constituents, but the general public, the larger medical community. And I think as we start to do that, and I think things like the Kay Hagan Tick Act, start to come to the forefront once COVID kind of gets through it’s it’s, it’s, uh, it’s prioritization. I do think we’ll make some headway. Um, I don’t think we can rely on government though, to come in and save the day. I, I, I’m not a real fan of that. I do think they got to take some ownership in this. And a lot of that will change. I think over time is some of the old guard, the CDC and as they start to retire and move out of their positions, you’ll get some new blood in there. And I think it’s up to us to try to encourage relationships, whatever that new blood is, no pun intended, and try to actually develop some relationships there that will allow us to have better conversations and better communication on how the government should really take this much more seriously, because we know it’s an issue. And I think the government knows it’s an issue. I don’t think they know how to deal with it.

Mimi (26:34):

Right, right, right. Exactly. But you don’t need to have the government in order to get the insurance companies to start approving, is that completely or what makes the insurance companies finally say okay.

Scott (26:46):

The insurance company is going to follow the lead of what sort of the government guidelines are, right. And what the medical guidelines are. And that’s kind of where I think the government piece comes into play. You know, it’s interesting about 15 years ago, multiple myeloma was working on a bipartisan effort with a woman named Kay Bailey Hutchison whose brother had multiple myeloma, and he was a Republican and Geraldine Ferraro, who was a Democrat in New York state for many years, vice presidential candidate, and she had multiple myeloma and they brought together this incredibly bipartisan effort. And they were able to get $250 million earmarked for research and other efforts around blood cancers in general. And the challenge once that’s earmarked is getting it appropriated and then getting it distributed. And I don’t know that that money ever got distributed. So it’s so hard to try to you, you have these battles on the policy level, and it’s so hard to get the money there, but if you can get the policy change and you don’t rely on the money, that’s where I think you can make the inroads of making a difference in patient’s lives. I don’t think the money’s gonna come from the government, especially with what we’re faced with today. The money’s gonna have to come from, you know, the private sector and that’s going to have to be donors, foundations, and it’s eventually it’s going to have to be some sort of industry partnerships and hopefully they can be industry partnerships that are, you know, with treatment options that are, that are safe and healthy. Right. And that’s what we all want.

Mimi (28:22):

So Scott, I was noticing on the Global Lyme Alliance website, you have an extensive list of resources. Can you touch on all the different resources that are available and sort of list them out for our listeners?

Scott (28:45):

Um, I’d have to go to the site myself to know. I mean, I know we have a lot there. What I will share with you is a couple of ones that I think are really important for what we’re dealing with today. Um, we initiated a peer to peer program, which is really just exploded, as you can imagine with the isolation that people feel, not just with COVID-19, but I think you said it earlier that people feel isolated with this disease from day one, right? They feel lonely. And so we didn’t want people to feel alone. So we created this peer to peer mentoring program where we match patients with a peer mentor to try to get them through those tough times. And of course our phone and our emails have been just blowing up with people, looking for that type of support. And that’s one area where we have a direct connect with the patient population to help them, which was really important to us. One thing that a lot of people don’t understand about GLA is every single one of our board members has he has either had Lyme disease or their family members have been touched by Lyme disease or both. So you have people that are incredibly passionate about wanting to make a difference, but they understand what people go through that need help in this disease in all stages, the acute phase, the chronic phase, the neurological craziness phase. My kids have it. My husband has it, my kids have it. My husband doesn’t believe that my kids are sick. You know, all of those scenarios, we have people that can help people walk them through those, those issues. So that’s a really important piece and it’s more important today than ever before. Um, you know, we’ve got a camp program that we initiated where we actually have partnered with a 150 or so camps and they’re around seven states, mostly on the Eastern seaboard and into a little part of the Midwest and the Northeast where we go in, we educate the camp counselors about being tick aware, checking kids for ticks, making their camps safe, you know, putting the, the signs out and making sure that kids are checking themselves, making sure camp counselors are being aware of it. If someone’s finds a tick on them, what to do, how to get that, that child help. And that that program is we’ve served over almost a million people in terms of their families and their kids to that camp program over the last three years that we’ve had it started. The other area that’s been really exciting for me, and I love it because it’s, it’s individuals like you, who kind of come together and help us sort of raise awareness and spread the word. And that’s our ambassador program where we identify people who want to help and volunteer in their own communities and be a voice for their story and be a voice for educating and providing information about Lyme disease, the seriousness of it, but giving a human face to it, right? So that somebody in your own backyard, somebody in your own community, that’s sharing their story with others about how they got the disease, what they needed to do, how they’re feeling as they go through their journey and what you can do to prevent the disease, what do you do if you get the disease. Those three programs really, I think encapsulate in a lot of ways, sort of our way to try to, as a small organization, in terms of our staff size, utilize technology, the website, social media, and really passionate people to help us become this global entity that we’ve become. Right. And we’ve got ambassadors all over the world now. So, you know, that sort of energy and that sort of passion when people are feeling well enough to do it has really helped, I think, provide people a sense of community and a sense of not being alone. And in many cases, people feel that way. And we’re trying not to have anyone feel like they don’t have a place to go to.

Mimi (32:27):

That’s amazing. That’s great. Now, can you, I’ve seen it before? I don’t know if it’s been in my news feed or in the news, um, that you guys, I think it’s you, that, that hosts the annual like New York city Global Lyme Alliance…

Scott (32:40):


Mimi (32:40):

Yeah. I can think Tara spoke at it, I think is what she was telling me last year.

Scott (32:46):

We did one in Greenwich for many years, and Tara was one of our honorees based on what her family has gone through. Our New York city event is traditionally held in October, each year at Cipriani. And it’s an opportunity for our board members who have relationships in the business community, on wall street, and other businesses around the country to get them the support the disease like they would support an American Cancer event or American Lung event or whatever, you know, what have you, and it’s become really kind of a really fun, exciting event. It gets a lot of press. We usually have some celebrity component to it, which always drives awareness. Um, it raises a little over $2 million each year that we do it.

Scott (33:34):

Um, we’re kind of in limbo right now this year with social distancing and whether or not we’re going to be able to do it physically, but we are talking about maybe a couple of virtual event type of options that we may go to. And interestingly enough, we’ve had a lot of donors come to us and say, you know, we want to support you, even if you don’t have that event cause what you’re doing is really important. So we’ve really been able to have an impact in the business community around that event, which is really the big driver of the money that’s raised there. And it’s a lot of that is driven by our board chair, Rob Kobre, and the work that he does at Credit Suisse. But we have a tremendous board and their outreach and their, like I said, their passion in wanting to make a difference and help patients really drives, drives that event. It’s a high ticket price, so not everybody can always attend. But if we do it virtual this year, maybe more people can experience it, but it really it’s an exciting night. Cause it’s a night where you eat. I think people will walk out of there with a lot of hope. And I think at the end of the day, what we’re trying to do is provide people hope. If they’re desperate, they’re sad, they’re depressed. They’re battling something that a lot of people don’t understand. You can give people a little bit of hope, you can save lives. And we know that that’s happened before. So at the end of the day, everything we try to do is if it’s good for the patient, we do it. If it’s not good for the patient, we don’t do it. So it makes decision making easy and we can move forward with providing people hope through the work that we do and the services we provide at the end of the day, we know we’ve done a good thing.

Mimi (36:03):

This was awesome. I really appreciate it for sure.

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Come Heal with Me! XX, Mimi