Nat Cap Lyme and the Children Series

Monte Skall

Thank you, Robby. It’s a pleasure to be here today. I think this is a truly wonderful project that you’re doing and we’re so glad to be a part of it.

Robby Besner PSc.D.

Thank you for being here. Why don’t you spend a couple of minutes, just kind of walk us back and forward to, you know, why you got started in this whole thing, this lime industry. I know these two decades or maybe more by now. Why did you get started? And so it give us a quick walk through to the things you’re focusing on today.

Monte Skall

Well, Robby, I guess you could say that I was bitten back in 2090 I mean, excuse me 99 and at the time there, wasn’t very much known about Lyme and tick-borne diseases. And I remember having the bullseye rash and I remember doing everything I was supposed to by going to the doctor after a month when I got sick and the rash spread. And, you know, I got all the symptoms and I actually went to a dermatologist and was told he didn’t know what that rash was. And he didn’t know why those symptoms I was having would be connected to the rash anyway, and he told me to go home. It would certainly pass in the next couple of weeks. So like so many Lyme patients out there, I started on this journey and it took me in so many directions and around about 2001, we decided to create an organization and it was called the National Capital Lyme Disease Association. 

So we are actually 20 years out in existence and have been offering support and education to patients and their family members for all that time. But like anything that starts off small, it grows big and expands. And we ended up finding that in order to make a difference. Not only did we need to offer support, we got involved in education, legislation and raising money for research. So we’ve been doing that all these years with many different projects from briefings on Capitol hill to creating and passing bills that help patients in both Maryland and Virginia and the bills that we actually created were passed in other states. So we just, we never ceased to come up with ideas and we get our ideas from the patients. 

And you see behind me the Voice For Lyme that you’re on top of the voice is very important to us because that is who we respond to, We respond to patients, we have a hotline that’s open almost 24 hours a day and we talk to patients. We don’t just refer them out. We talk to them. And so a lot of their needs and what they’re going through comes through in the projects that we get involved in. And so today I am gonna talk to you about, I think, a very important project that we’re going to be moving into in the next week or two and all through the summer actually. And we want our community involved in it too. So that is, we call ourselves Your Voice For Lyme.

Robby Besner PSc.D.

Wow, amazing. Well, before we jump into that, let me just tell everybody out there that might’ve just tuned in now, how they can find you and find the organization. So, because since we’ve got a long name, shortened it to make it easy for people to type it in. So netcaplyme.org is the website, which maybe was a little luck and some ingenuity. Everybody knows I’m a little bit handicapped when it comes to technology sometimes. And the other side is they can reach them by an email, which is [email protected] Also, Now we’ve mentioned the hotline, is that different than the 703 number? Is that a different number that people call?

Monte Skall

Its 703 821 883 3

Robby Besner PSc.D.

Okay, So that’s another way to get to reach, to you, your husband and your services, to get a voice, to just have someone on the other end of the phone that has gone through the journey like you guys have, but really more importantly, you’re on the front line and in many other ways, because as you know, so people that don’t understand, there are lots of different ways that money is raised for research and development and the big ones for the last 30 or 40 years, maybe even more has been cancer. And so, you know, when there’s more money raised to run these organizations for research, then guess what they get to hire the best doctors. And so when you don’t get that money, you don’t get the best doctors. 

So you don’t get the best research. So we don’t make the same kinds of advances as they may have had in other areas. So that’s, the funding piece is so important. And so it’s really great to know that there’s guys like you guys, you and your husband, of course, that are out there on the leadership profile that are taking those funds and creating a voice, making sure that we’re part of the legislation, making sure that the Lyme community is represented because it’s so great and important for us to get anywhere. So let’s go back to, you know where you’re at and also the start talking about your new.

Monte Skall

Well, I’d like to just say two things before we do that. Rob, is that something that a lot of people don’t know, our organization is all volunteer. It has no paid employees and it only operates out of the goodness of people volunteering and people donating to the association. So that is one thing. And then another thing is maybe you don’t know this, that we do work with doctors also, besides patients. In other words, we offer representation to doctors that are, you know, unfortunately under the gun or being investigated or have to go up for hearings. In fact, we have a legal team that presents every year at the eyelids association, wherever they hold their conference. And it’s made up of three attorneys and they’re on the front lines of protecting these doctors. So we get involved in that

Robby Besner PSc.D.

Yeah,

Monte Skall

Very important

Robby Besner PSc.D.

Many of Lyme patients don’t understand that the now things are working on progress, but 10, 15 years ago, a lot of these doctors put their licenses at risk because they were trying to do the best for the patient. And unfortunately, sometimes that falls outside the envelope of some of the things that they’re allowed to do based on certain registrations. And so that’s where these representations is so important because the doctors have been kind of put into a funny spot where they wanna help the patient, but then in doing so they may be on the fringe of some of the legalities. So having an organization like you to know that there’s one out there and they can actually seek help maybe advice before they start their protocols, whatever they’re looking to do. And, or as they do get in our little tickle, they can come to you guys and get some extra services. That’s awesome.

Monte Skall

And unfortunately, Rob, it’s still going on today. You know, we just finished a case last fall with a doctor here in Virginia. So it hasn’t stopped, and these attorneys actually advise doctors how to best protect their practices so that.

Robby Besner PSc.D.

Important, Super important. Okay, so man, this is so exciting, like what you been doing, but as exciting as everything you’ve done, I almost want to feel like it’s like your last Opus or like the crescendo of things that you’re doing on the education point of view. So let’s talk a little bit about the new program that you bring out and I’m gonna do that. I’m gonna try to share our screen now. So you gonna tell me if this is working on your end. Okay.

Monte Skall

Okay

Robby Besner PSc.D.

I think I got it right. But let’s just make sure. So you should see my full screen now, which is basically bringing up your website. Is that correct?

Monte Skall

Yeah its there Rob, its there

Robby Besner PSc.D.

Before we jump to the program that we’re talking about, let’s just go into your main website, right? And so for the people that haven’t seen your site before, wow, look at the colors, the use of color as well. Your use of balloons is stunning.

Monte Skall

Yeah, I know. Well, we talk about that.

Robby Besner PSc.D.

Yeah, so, let’s walk us through the site and some of the little tabs here, things that you feel are important.

Monte Skall

Well, okay. If you open our role in impact, of course, that shows you that you’re board, and we also, if you go down to legislative activities, that link, You can see the many different legislative bills, we’ve been involved in since.

Robby Besner PSc.D.

That’s you right there, right?

Monte Skall

That’s me in the middle. That’s Lesley Fein, a doctor from New Jersey on the other side of me. And that’s Karen Forstner from the original Lyme Disease Foundation, the first Lyme Organization that I’m aware of patient advocacy organization in the country. She goes back to the late eighties, mid eighties.

Robby Besner PSc.D.

Wow

Monte Skall

And that was a lobbyist on the other side, Mary Hill Linsky, who unfortunately is no longer with us she’s passed on. And so that was a few years ago, that picture was taken

Robby Besner PSc.D.

Right?

Monte Skall

Right.

Robby Besner PSc.D.

And then we have those support groups here, so.

Monte Skall

Yes, I will say that, you know, over the years we have, this has been our number one focus has been on support because we feel it is extremely important to be there for the patients. And we, love the zoom ability because we can bring people in from all over and that’s, what’s happening now. They’re coming from other states into our support groups to benefit from the support, so, but we only have those, locations up there, but you can on in any meeting.

Robby Besner PSc.D.

And then also you’re looking to expand chapters into different states.

Monte Skall

Yeah

Robby Besner PSc.D.

So this is all part of it. And then you’ve got, looks like here, we just have a whole educational piece.

Monte Skall

Right?

Robby Besner PSc.D.

Yeah, That’s the educational piece

Monte Skall

Really nice. I’m gonna skip over the next step is we’re going to come to that, spend a lot of time there.

Robby Besner PSc.D.

And the prevention

Monte Skall

Right.

Robby Besner PSc.D.

And testing remove the tape and all that stuff. And then these are various different awards and grants that you’ve gotten over the year.

Monte Skall

Yeah, no, these are actually grants that we have given to others over the years,

Robby Besner PSc.D.

I see wow.

Monte Skall

connected to raise, money for research. We do, and it all goes right out the door to, and they don’t necessarily have to be big grants, but there we wanna help people with their projects. So we have a little bit of everything in there. We’ve done a lot of work with Old Dominion University in particular, in the state of Virginia funding, their tick drags, and, you know, what’s in those ticks. So, but anyway, and, and supporting, we support Eyelids, by the way, in education, every year, we will educate new physicians. 

And by that, give them scholarships to their conference. And we mainly look at the fundamental course, because that is for physicians who are not necessarily Lyme treating physicians, but are interested in becoming educated about Lyme And we think that’s extremely important. So we fund that every single one year, we funded 50 scholarships, which if you do with them at $480 a pop scholarship, it does add up. So that’s why I’m coming back to the whole idea that we feel education is your best defense against Lyme and tick-borne diseases, we wanna educate the docs.

Robby Besner PSc.D.

Sure. And Lord only knows that we need more Lyme that are doctors out there, right?

Monte Skall

That’s so true

Robby Besner PSc.D.

Sure. Okay. `And then I guess here is the ways that people can help you know, your whole system you know what you’ve created and you’re able to structure, Right. So that’s cool, and so many Lyme patients, I mean, we coach that coached thousands and thousands over the years through their site. And one thing I always say to them, look, I’ll spend as much time as you need to help you to get healthy. The only thing I asked in return is that you just help a friend out. And so really what you’re doing was the same thing, less, you know, come to achieve at our time. And this is a perfect way. Like if you can’t help a friend then contact Natcaplyme and see what you can do to help them in what they’re doing, you know, in terms of needing extra help support, it’s not always about money. It’s can just be influencing people or your community, so what

Monte Skall

You know, if you go to our Facebook, you will see we have up there, it’s a standard post. If we need volunteers, we’re always asking for volunteers. So if anybody ever wants to has time, that wants to work in different areas of whether it be legislation or, you know, support groups, working with the patients, you know, writing, communication, any of that, we’re right here waiting for you.

Robby Besner PSc.D.

Wow, amazing. So, you know, if you’re feeling like you don’t have a voice here is Monte Skall to tell you that you do, and as you’re lacking or a need to fill some space and make a contribution, here is the place to go. You shouldn’t feel pathetic like you’re just stuck in, you have no voice when you have a group. And that Monte has spent so much time with her husband been putting this together, creating that infrastructure for all of you to basically utilize, to help bring awareness, raise the lens to the problems out there.

Monte Skall

And Robby, you know, so many people call us and, and they’re really, I won’t say they’re desperate, but they’ve tried many different things and you know, they’re very, how can I put they’re disillusioned? And so we try to create in them that the need that they can still do things they can still contribute. And so we think that’s extremely important to recovery, to be active and to be able to feel like you can help others. And so that is in the next, in the program, we’re gonna talk about, I’m gonna make that very clear, how they can do it, but everybody can contribute. Everybody can be a part of the process,

Robby Besner PSc.D.

Wow

Monte Skall

You know, as a teacher, you all, I used to teach for many many years when I was a young woman. And I always thought the product was the most important thing, but it’s the process. And that’s why I keep telling people, you can become a part of the process. And that’s, the real beauty of, you know, being a volunteer.

Robby Besner PSc.D.

Wow, you know, that’s so cool. It’s the process, how simple, okay, man, I can’t wait anymore, so I’m just jumping right in. This is the crescendo of all crescendos. So Monte let’s spend the rest of our time together today, talking about your new programming. Like man, I’m so excited. It’s like the sneak preview of all previews. So click on the tab. This is, again, you can get this on her website. Now the program is just about to be launched. So check out the name, Tick busters. Is that crazy or what?

Monte Skall

We’ve got the trademark on it.

Robby Besner PSc.D.

All right, so walk us through this program, all the ins and outs and why it’s so exciting and why your passion is here and how you came to even thinking about, you know, starting at this point makes sense to me, but everybody out there wants to know why.

Monte Skall

The reason this project was so important is because we’ve lost children here in Virginia and Maryland over the years. And we lost the young man. He committed suicide and his name was Joey and we wanted to do something in his memory. And so we came up with what would Joey really appreciate more than anything else? And joey was the kind of young man who wanted to help others. He was a good, good person. And so we said, if Joey’s legacy could be left to help educate children about tick-borne diseases, be aware of them, then what a wonderful thing to do for his family. And so we started on this project called Tick busters and we wrote a storybook and we had on our committee about, oh, about six people, and most of them were teachers, parents, and a few advocates, but we started to build a story. 

And if you move it on up a little bit moves, Tickula was the character. And because we found that in the age group, kindergarten through sixth grade kids really start to like gory stuff. And so rather than just do another walk through the woods storybook, we said, we want something that will grab them and that they really can have fun with, and so we came up with ‘Tickula Wanted Dead or Alive’. And this whole series is, you know, children are, I think it’s 30% is the stat. That’s always used to say that they are the demographic that is really affected more than any other when it comes to Lyme and tick-borne diseases. And so we noticed that there wasn’t really a lot of education out there in the school systems to make children aware, especially as this age group, when they’re out on the playground, they’re out there playing soccer, they’re out there playing baseball that, hey, you need to check yourself when you come in and be aware that ticks can get on you when you’re outdoors. 

And now with everybody out there camping, I mean, this is what all the young families do. You know, they, because of the COVID, they do a lot of camping on weekends. And so we felt this was really, really important. And as you can see, we have education is your best defense against kid ticks and the diseases they carry, and that’s extremely important. So we came up first of all, with the booklet and it’s a wonderful story booklet and the children love it. We’ve tested it on many children and the results are all really good. And then we went into, you want to scroll on down a little bit here on this site, Education Awareness and Prevention. And this, is basically explaining why we did the booklet and why it’s really important to be aware of Lyme and tick-borne diseases, and then if you

Robby Besner PSc.D.

I have to jump onto each of these tabs, yeah. People are just tuned in, we’re talking to Monte Skall, the Executive Director of NatCaplyme. You can get our hotline number 7 0 3 8 2 180 8 33. And she’s walking us through a new program. That’s just about to be released. That’s an education program, mostly for young kids. And it kind of makes sense because they’re out there playing in those, in the fields they’re camping. Like you said, with families, a couple of things, one, they can get patient contract affecting themselves. And more importantly, you know, they, they have their friends too, and they notice it on their friends and they can share this information and what a better way to educate the community at large, because they grow up, they tell their kids, everybody just become more aware of the challenges were tick-borne diseases and particularly Lyme. So this is way, way super important.

Monte Skall

And Robby, it’s the old philosophy you educate from the bottom up as well as the top down. And I have found when I was teaching many, many years ago that children are the best teachers, especially to their parents, they have a captive audience. When, that little one comes home at the end of the day, and dad says, what did you learn in school today? And they’ll say, sit down, dad, we wanna tell you about ticks and what they can do and how to prevent getting them on you. I mean, those parents listen, so that’s, that’s another focus of this program. It teaches the adults as well as the parents. And then if you scroll on down, this is a poem that starts the booklet off winter, spring, summer, fall, and every season ticks are on the crawl. 

Joey and his friends are on the ball, searching for Tickula the scariest of all. So pay attention because this story is about prevention, join Joey and his pals, as they mentioned, one wicked tick who deserves detention. Now, you know, I should explain here that Tick busters is really a fun field children’s fantasy mystery story that tells the tale of a menacing tick Tickula, who is on the loose and causing habit through the story. The reader learns about ticks their habitat, their life cycle and the diseases they carry and how to properly remove them and what to do after they are removed. So this is what a child comes away with, and this is what he teaches another child, or he teaches his parent. And so that’s sort of what the story booklet does. Now let’s move on to the video.

Robby Besner PSc.D.

So you’d, you use the avatar Tickula to walk everybody through this story?

Monte Skall

Now, we also said in the, in the time of COVID, when you know, everything was being done online teaching, now we know that schools are gonna open up again, but we thought a video would be really important to get the message across. And so we actually got a wonderful storyteller. He’s a national storyteller out of California to do the booklet for us. And this video has animation and it has him telling the story and it has a lot of information that children love. So we have that up there and it’s available, you know, you can download it and watch it. And by the way, the booklet actually flips. It’s a flip booklet. So you can go through the whole booklet.

Robby Besner PSc.D.

Okay, so this, you keep mentioning the vocals. So it’s part of a chip?, well, I guess we’ll get to that.

Monte Skall

For charming to that net

Robby Besner PSc.D.

Perfect. Okay, here we go. I’m gonna continue down the screen.

Monte Skall

Right? And this is a little bit of what’s in the booklet and we call it, there is a Tick Busters Series and that is made up of, first of all, the booklet, the story booklet, a coloring booklet, an informational children’s brochure, a rack card for libraries and a tick identification card and membership card, and also a fun, a washable tattoo that they can put on their arm or their leg, wherever they want it. Are you keep going down to do it either way?

Robby Besner PSc.D.

Yeah, lets keep scrolling

Monte Skall

Here comes the bundle And there’s the coloring book and it’s done off of the booklet, of course, in any children’s brochure, there’s the rack card for the libraries. It’s all the same thing. And there’s the tick identification card for children. There’s your tattoo.

Robby Besner PSc.D.

Nice.

Monte Skall

And there is the booklet.

Robby Besner PSc.D.

You have beautiful donations amazing

Monte Skall

Yeah, they did a nice job.

Robby Besner PSc.D.

No, you did a nice job It takes a good director and all this stuff put together. I’m sure it’s been many, many months of long hours putting this together.

Monte Skall

We worked about a year and a half on this project.

Robby Besner PSc.D.

There we go all right, keep going right.

Monte Skall

Now the Tick Buster’s Box is something else that we feel is really important because this is for the classroom. This is for , a camp class, and it has something like 180 pieces. We did it based on 30 children, because we felt that was the average of a classroom. And see a teacher can actually take this and do this comes with the lesson plan, by the way, Robby and use the lesson plan, teach it, or she can use the video to teach it. So it’s really all the work is done for the teacher.

Robby Besner PSc.D.

Amazing, so look at these prices. It’s crazy, how could you even afford this. This looks like it cost a lottogether

Monte Skall

Listen our purpose is not to make money. Our purpose is to promote education and because we feel that’s how things are gonna change. When enough people are educated about this disease and the need for the kind of research that we haven’t gotten up until now to find what will help people mainly get a cure for this disease, if it’s possible. But the bundle with all the pieces, the six pieces is $5 and that’s at our cost and that’s including your shipping, and believe me, it is expensive to make quality literature like this. And so that is absolute costs, the Tick Buster box. That’s another one to send it to you. It costs us by priority mail, 1550 in the box. And the rest is all the cost of materials because you’re getting 180 pieces. By the way, this is just not for the classroom. It’s for civic associations. It’s anytime a group gets together that, you know, you have a large amount of people there. This is a perfect way to educate them.

Robby Besner PSc.D.

No, it’s fantastic. I love that. And I can’t believe that you can actually do it at this price so people can just send it if I want to just send a contribution so that I can find like a box or two boxes to be sent to a school or classrooms and so forth, I can just contact you, we order them, you send them out. And then I know that I’m making my contribution to elevate education. At least to one or two public schools are as many as you can, you can send them to, right.

Monte Skall

Let’s say somebody wanted, and I’ve got a picture here, but I know you can’t see it, that they’ve already done it because we started with something called Little Three Libraries. But I don’t think you can see this picture here. You’ve got a young child. She’s actually reading the story to her classmates, the story booklet. And so let’s say a parent wanted to have this for her child’s class. If she lets us know where to send it to that teacher, to that school, we can just go ahead and send it to them. You know, as long as they made possible the way to get it there for them.

Robby Besner PSc.D.

This is amazing. You know, Monte, we’ve talked about this before, but you hadn’t had those sight of yet. So this is brand new and we talking just days ago. It feels like the ink hasn’t even dried on screen yet.

Monte Skall

Yes, I know. Well, it just went live last night to be quiet. Look at that

Robby Besner PSc.D.

Holy mackerel. Okay, so we can join. We can join your group, We can join that capLyme org. I mean, there’s just so many ways that we can all participate in giving back and it’s not just about money. It could just be about your skills. It could be about your time. It could be about just introducing this whole profile to someone that you know, that will help moving the ball a little bit further down the field. Monte, this is really amazing. And I can’t believe how you’ve just kind of caught every angle. And I just love the fact that you are really starting at the ground level with the kids and educating them and doing it on their level. You’re like getting your nose right to the ground. So you’re not coming from the authoritative spot, your using icons, you’re using colors that are going to be attractive. It’s going to be fun for kids to learn. And there’s so anxious to get back into school now. So your timing is so perfect and bringing it up.

Monte Skall

You know, Robby, let me throw this in there too you know, for a couple of years, and I don’t want to name what school system it is, but it’s a pretty big one around here. And we tried to get some sort of program in to really educate kids. And we actually went ahead and financed their curriculum to do that kindergarten through 12th grade. And that was a massive effort, but we learned very quickly. There’s so much red tape trying to get into school systems that we just felt. Now, this is where the parent can really help. And the parent can ask their teacher to teach it. And then, it can be gotten out there the information, this one school system I’m talking about. They only had two items that they addressed health items with children. One was obesity and the other was bullying. 

And as much as we tried to convince them, if you have these children out on the playground and doing all their sports or competitive sports and everything, why wouldn’t you want some sort of program to educate them? And so we finally out of frustration just decided to try to go ahead and let our community play a big part in this and get it rolling. And there’s two other parts to this that I haven’t talked about. And I know our time is short. One is the free, the free little libraries, and that’ll be coming out. We don’t have it here to show you all, but you can participate in that. And these are something like over, I think it’s a hundred thousand little libraries all over the country that are in your neighborhood and you don’t even know it. 

And people take books there and put these books to share with their neighbors. So we’ve donated 5,000 of these story booklets to that effort. And people have started to go out and put the booklets in their little libraries in their neighborhood. So just another way of educating. And, then also we’re going to be introducing an education bill in Virginia and probably Maryland that will be promoting education on Lyme and tick-borne diseases in the school systems throughout the state and the libraries. So we’re doing everything we can to get the word out. And so.

Robby Besner PSc.D.

I knew what he’s saying, and I understand the politics and it just takes so long to get it pushed through almost like, you’ve been trying through the front door, but using the back door through the kids is amazing. And the families, because the PTA is not all these associations get together and they start talking about it. There’s going to be more interest and more interest. And now by creating a box in the package and, sort of completely, you know, from soup to nuts, you really covered all the bases and the delivery system to bring it to the classroom. It seems like you’re just making it so easy. And hopefully this of a little bit of gumption and a little bit of effort, some good energy, which I know that community that’s listening today. They’ve got all the energy in the world to make this happen. So let’s get let’s join together and, and help you with your process here. Because since this is so important.

Monte Skall

Thank you, Robby. Thank you. And I hope everybody wants to play their part and makes a difference in their community. And you can do it. You really can. We’ve seen it happen many times over the years, and you’re an integral part of this process. Remember, it’s the process, not the product.

Robby Besner PSc.D.

It’s the process, not the product woman. I really appreciate your time today, It’s amazing You know, very honored that you basically announced the program. First on our show and everybody can tune in the Lyme Awareness 2021 Program, That healthy hotline, YouTube channel is going to be there for perpetuity. So people can review this forever and ever, and downloaded it, tell their friends about it. So we’re so happy that you came on the time to spend time with us today. You’re amazing your, energies for this program, into the communities is unwavering. And it’s so important that we have more leaders and pioneers like you out there that are willing to spend the time and care. So Monte again, you and your husband, thank you so much for everything you’ve done to date and the things you will be doing, certainly this program. And we’ll learn more about Tick Busters and how exciting the program will be in the future. Thanks again, for joining us.

Monte Skall

Thank you Robby

Robby Besner PSc.D.

Hey everybody, it’s Robby Besner thanks so much for joining us today. Please share this content with anyone that you think might benefit from it. And we’re looking forward to having you with us tomorrow for another great interview.