Nat Cap Lyme and the Children Series

Hey, everybody. It’s probably best there. And I’m back with another episode in our Lyme Awareness 2021 series. And it’s today I have the most amazing guest that’s joining us.

My name is Marty Scally, and she’s the executive director for National Oil Cap lyme.org. She’ll tell you all about this organization. It’s amazing. I think it’s one of the original Lyme, non-for-profit.

It’s set ups for, you know, all of the one community. They have to have a voice, you know, in the legislation in basically Washington, D. C., which is a kind of area where they’re all located or at least the organization’s domiciled.

Monty, you know, basically as a teacher and also an artist by trade. And you can see that in the way that she expresses everything that she does. And more importantly, she has the most exciting program that she’s just releasing now.

So all you guys out there are getting, of course, sort of a quick peek, sneak peek on the, what Lyme education and I’ll look like in the future, at least for the kiddies.

So, let’s bring on Margie. She is a dear friend of mine. I actually met her six years ago. She was so sweet enough to hold an olive branch out. When Julia passed, we were looking for a way to create a foundation to continue to contribute to Lyme research, to all the things going on in the Lyme industry at the time.

And research. Why did far to find actually Maggie and her group? Because it was considered and still is. It’s sort of the gold standard. And in terms of Lyme awareness, the association’s pulling all the legislation together.

It’s really no small feat. And it takes an organizational person like Monty and her husband Jean to pull this all together. So let’s bring this all on to, onto the Healthy Hotline.

Monty, welcome to our Lyme awareness campaign. Thank you. Robbie, 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 you.

And thank you for being here. Why don’t you spend a couple of minutes and just kind of walk us back and move forward to, you know, why you got started in solving this Lyme industry?

I don’t think it’s is two decades or maybe more, but now it’s, why do you get started and sort of give us a quick, you know, walk through to the things you’re focusing on today?

Well, Robbie, I guess you could say that I was bitten back in, 2009. I mean, excuse me, in 99. And at the time, there wasn’t very, much known about Lyme and tick borne diseases.

And I remember having the bull’s eye rash. I remember doing everything that I was supposed to about 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 2000 and, one, 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, many different projects from briefings on Capitol Hill to creating and passing bills that helped 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 are 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 going to 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 why we call ourselves your voice for line. Wow. Amazing. Well, before we jump into that, let me just tell everybody out there that might have just tuned in now how they can find you and find the organization.

So because it’s we have a long name shortened it to make it easy for people to type it in. So nat cat lyme.org is the website which maybe with a little luck and some ingenuity because, everybody knows I’m a little bit, handicapped when it comes to technology sometimes.

And the other side is, they can reach by email, which is Nat cap line at Nat caplin.org. Also now we mentioned the hotline. Is that different than the 703 number.

Is that a different number that people call (703) 821-8833 okay. So that’s the number I was going to announce. So that’s another way to get to know to you your husband 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, for 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, is the cancer. And so, you know, when there’s more money raised to 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 line, community is represented because it’s so important for us to get anywhere.

So let’s go back to you know, to you know, where you’re at and also start talking about your new program. 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, I 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 out through hearings.

In fact, we have a legal team that presents every year at the Islands Association, wherever they hold their conference. And, it’s made up of three attorneys, and they’re on the frontlines of protecting these doctors.

So how we get involved in that is important. Yeah. You know, very important. Many a lot of patients don’t understand. And now things are a little bit more progressive.

And ten, 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 and so important, because the doctors have been kind of put into a funny spot where they want to help the patient, but then in doing so, they may be on the fringe of, of some of the legalities.

So having an organization like you to know that there’s one out there, they can actually see maybe advice before they start their protocols, whatever they’re looking to do.

And or if they do get, you know, a little tickle, they can come to you guys and get some extra services. That’s awesome. And unfortunately, Rob, it’s still going on today.

You know, we just finished the case last, last fall, with the doctor here in Virginia. So, it hasn’t stopped. And, the these attorneys actually advise doctors how to best protect their practices.

So, that’s really important. Super important. Okay, so, man, this is so exciting. Like, what you’ve 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’re bringing out. And I’m going to do that. I’m going to try to share our screen now. So you’re going to let me tell me if this is working on your end.

Okay. Okay. 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? Yes.

It’s there, it’s there. Okay. Or we jump to the program that we’re talking about. Let’s just go to 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. And your use of balloons is stunning I know. Well we had a little talk about that. Yeah. So, so let’s to walk us through the site and some of the little tabs or things that you feel are important as well.

Okay. If you open our roll in impact, of course. So that shows you that, our board and we also, if you go down to legislative activities, that link, you know, legislative activities, you can see the many different legislative bills we’ve been involved, in since.

That’s you right there, right? That’s me in the middle. That’s Leslie Fine, a doctor from new Jersey on the other side of me. And that’s Karen Forester 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 80s, mid 80s. Wow. And, that was a lobbyist on the other side, Mary Hilinski, who unfortunately, is no longer with us.

She’s passed on, so that was, a few years ago. That picture was taken. Yeah. We all know that building in the back room, right? Right. Okay. So, and then we have the support groups here, so. Yes, in your on the base.

Yes. And 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, 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 those locations up there. But you can get on in any meeting. And also you’re looking to expand chapters into different states.

So this is all part of it. And looks like here we just have a whole educational piece, right? Yes. That’s the educational piece. Really nice. I’m going to skip over.

The next step is we’re going to come to that, spend a lot of time and prevention. Right. So that link between the testing and how to safely remove that, and all that stuff.

And then these are various different awards and grants that you’ve gotten over the years. Yeah. No, these are actually grants that we have given to others over the years.

But I think we 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 they’re we want to help people with their projects.

So we have a little bit of everything in there. We 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 supporting we support islands, 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 line.

And we think that’s extremely important. So we fund that every single year. One year we funded 50 scholarships, which if you do them at $480 a pop, scholarship, it does add up.

So 20 grand and more and, you know, 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 want to educate the docs. Sure. And Lord, only knows that we need more Lyme literate doctors out there, right? That’s so true. Sure. Okay. And then I guess here is the ways that people can help. Yes.

Support your your home, you know, your home system and you know what you’ve created your infrastructure. Right. So that’s cool. And so many Lyme patients I mean we have coached thousands and thousands over the years through there.

And one thing I, I, 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 ask in return is that you just help a friend out.

And so really, what you’re doing is the same thing. Let’s, you know, achieve with our time. And this is a perfect way. Like, if you can’t help a friend, then contact that cat, live 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 now it’s about money. It’s just be influencing people that you know in your community. So, you know, if you go to our Facebook, you will see we have up there.

It’s a standard, post. We need volunteers. We’re always asking for volunteers. So if anybody ever wants to has time that wants to work in different areas.

Whether it be legislation or, you know, support groups working with, patients, you know, writing, communication, any of that. We’re we’re right here waiting for you.

Wow. Amazing. So now, you know, if you’re feeling like you don’t have a voice here is on started telling you that you do. And if you’re lacking or need to fill some space and make a contribution, here is the place to go.

You know, we feel you shouldn’t feel apathetic, like you’re just stuck in you have no voice when you have a group, and that money has spent so much time very invested in putting this together, creating an infrastructure for all of you to basically utilize to help bring awareness, raise awareness to the problems out there.

And, Robert, you know, so many people call us in 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 going to talk about. I’m going to make that very clear how they can do it. But everybody can contribute.

Everybody can be a part of the process. Wow. 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 that’s the real beauty of, you know, being a volunteer. Well, you know, that’s so cool.

It’s the process. How’s the process? Okay, man, I can’t wait anymore, so I’m just jumping right in. This is the crescendo of all crescendo. So, Mandy, let’s spend the rest of our time together today talking about your new program.

And like me, I’m so excited. It’s like a sneak preview of our previews. So I click on the tab. This is again, you can get this on her website and the program is just about to be launched.

So check out the name Tech Busters. Is that crazy or what? It’s yeah, we’ve got the trademark on it, which is a all right. So walk us through this program.

Well, 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. So let us know 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 Joy was the kind of young man who wanted to help others. He was a good, good person. And so we said, if 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 story book, 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, move it. Ticular 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 tequila, 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 to make children aware, especially at this age group, when they’re out on the playground.

So 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, and this, this is basically explaining why we did the booklet and, and why it’s really important to be aware of Lyme and tick borne diseases.

And then if you don’t have to jump on to each of these tabs. Yeah. People that just to. Yeah. We’re talking to Monty Skull, executive director of Nat cap line.

You can get our hotline number 703821 8833. 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 the in the fields. They’re camping, like you said, with families. A couple of things. One, they can get, they can contract and become effective 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 better way to educate the community at large because they grow up, they tell their kids, everybody just becomes more aware of the challenges with tick borne diseases and particularly Lyme.

So this is way, way super important. And Robbie, 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 them many years ago that children are the best teachers, especially to their parents.

They have a captive audience when 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 want to 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.

Tickets are on the crawl. Joey and his friends are on the ball searching for tequila, the scariest of all. So pay attention because the story is about prevention.

Joined Joey and his pals as they mention one wicked tic who deserves detention. Now, you know, I should explain here that Tic Busters is really a fun filled children’s fantasy mystery story that tells the tale of a menacing, tick tick killer who is on the loose and causing havoc.

Through the story, the reader learns about ticks, their habitat, their life cycle, 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. So you use the, you use the avatar or ticular to walk everybody through this, right? Yeah. Wonderful. Absolutely wonderful.

Now, we also said in the, in the time of Covid when, you know, everything was being done online for teaching, now we know the schools are going to 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 this video has animation in it. 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 download it and watch it.

And by the way, the booklet actually clips, it’s a flip booklet. So you can go through the whole booklet. Okay. So this you keep mentioning the booklet.

So it’s part of a kit. So yeah. Everybody kind of like well I guess we’ll get to that. We’re coming to that next. Perfect okay okay. So here we go. I’m going to continue down this screen here. Right.

And this is a little bit of what’s in the booklet. And we call it there’s 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, washable tattoo that they can put on their arm or their leg wherever they want it.

Great. That’s great that you can see that bundle here, right? If you click on the bundle or you keep going down, you can do it either way. I really must keep going.

Yeah, there’s here comes the bundle. Okay. Look at that. And you’ve got the marquee so people can scroll along and they can. And there’s the coloring book and it’s it’s done off of the booklet.

Of course, in the 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, and there’s your tattoo.

Nice. And there’s the booklet. Look how beautifully done. That is amazing. Yeah, they did a nice job. Now, you did invest, takes a good director to get all the stuff you put together.

I’m sure it’s been many, many months of long hours putting this together. No doubt. We worked about a year and a half on this project. Here we go. Okay.

All right. You’ve gone right. And now. Now the tick busters box is something else that we feel is really important. Because this is for the classroom.

This is for a camp, camp class. And it has something like 180 pieces. We we did it based on 30, 30 children because we felt that was the average of a classroom.

And see a teacher can actually take this. And this comes with a lesson plan, by the way, Robbie, 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. It’s amazing. So. And look at these prices. It’s crazy. How can you even afford this? This looks like.

Well, are you put this together. Listen, our our purpose is not to make money. Our purpose is to promote education. And because we feel that’s how things are going to 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 cost. The tick buster box. That’s another one to send it to you. It cost us, by priority mail 1550 in the box, and the rest is all the cost of materials because you’re getting 180 pieces.

So, by the way, this is just not for the classroom. It’s for civic associations. It’s any time a group gets together that, you know, you have a large amount of people there.

This is a perfect way to educate them now. 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.

If I wanted to send a contribution so that I can fund like a box or two boxes to be sent to a school or classrooms and so forth, I can just contact you.

We order that, you send them out, and then I know that I’m making my contribution to elevate education at least to 1 or 2 public schools, or as many as you can.

You can send them to right, right, right. Let’s say somebody wanted and I’ve got a picture here, but I know you can’t see it. They’ve already done it because we started with something called Little Free Libraries.

But, I don’t know if you can see this picture right there. 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 may possible. The way to get it there for them out. Tax funding. This is amazing. You know, Mandy, we’ve talked about this before, but you hadn’t had the site up yet, so this is brand new.

I mean, we’re talking just days ago. Feels like the ink hasn’t even dried on this screen yet, that some reader says, yes, I know. Well, it just I think this went live last night to be quite, But look at that.

Holy mackerel. Okay, so we can join. We can join your group. We can join that cap lime 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.

Planting. 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, you know, authority to spot your icons. You’re using colors that are going to be attractive.

It’s going to be fun for kids to learn, and they’re so anxious to get back into school now. So your timing is so perfect. And bringing it out at this point.

You know, Robbie, 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 a 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 then it can be gotten out there. The information this one school system I’m talking about, they only had two items that they address help 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 else, 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 the 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 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 100,000 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 5000 of these, story booklets to, to to that effort. And people have started to go out and put the, the booklets in their little libraries in their neighborhood.

So it’s just another way of educating and, and then also we’re going to be introducing an education bill in Virginia and probably Maryland. That will be promoting education online 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 I just I do this, I hear what you’re saying, and I understand the politics, and it just takes so long to get it real.

Push through almost like 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 all always associated and they get together and they start talking about it, there’s going to be more interest and more interest.

And now by creating a box and a package and a and a sort of completely, you know, from soup to nuts, you’ve really covered all the bases and a delivery system to bring it to the classroom.

It seems like you’re just making it so easy. And hopefully this with a little bit of gumption and a little bit of effort, some some good energy, which I know the 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 this is so important.

Thank you. Robbie. 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. And many times, over the years. And you’re you’re an integral part of this process. Remember, it’s the process, not the product.

It’s the process, not the product. Woman. And I really appreciate your time today. This is amazing news. And, you know, I’m very honored that you basically announced the program almost on our show. Yes.

And everybody can tune in, the Lyme Awareness 2021 program on the Healthy Pipeline YouTube channel is going to be there for perpetuity so people can review this forever and ever, and download it and 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. You’re you’re you’re energy through this program into the community is unwavering.

And it’s so important that we have more leaders and pioneers like you out there that are just willing to spend the time and care so much. Again, you and your husband, thank you so much for everything you’ve done to date and the things you will be doing.

And certainly this program. And, we’ll learn more about two clusters and how exciting the program will be in the future. Thanks again for joining us. Thank you. Robbie.

Hey everybody, it’s Robbie, best nerd. 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 for.