Transcript:
This podcast was transcribed through a third-party application. Please disregard any misrepresentations.
Brad Caruso:
Welcome to Civic Warriors, brought to you by Withum. On this podcast, we bring the conversation to you, sharing, engaging stories that motivate and build consensus in the nonprofit community. This podcast is about the innovators, the leaders on the frontline of adversity, guiding lights in the nonprofit industry affecting change. And through their stories, we can all join forces to become civic warriors.
Brad Caruso:
Hey, warriors. Welcome to today’s episode of Civic Warriors, brought to you by Withum. I’m your host, Brad Caruso, leader of Withum’s, Not-for-Profit practice. Today’s guest is an organization that works to address a disease and disorder that is not often talked about, but affects so many. David Manchon joins us today and is the executive director of the Epilepsy Association. The Epilepsy Association is dedicated to improving the quality of life of persons affected by epilepsy and seizure disorders and reducing the incidence of onset. We’re gonna learn a lot about epilepsy today and a lot more that we haven’t learned, you know, before. There’s a lot of myths out there that, uh, we’re gonna, we’re gonna debunk and we’re also gonna learn a lot about the work that David and team are doing at the Epilepsy Association. So, with that being said, David, welcome to the show.
David Manchon:
Brad. Thanks for having me. I’m excited to be here. I appreciate the opportunity to talk about epilepsy. It’s a, it’s a disease of isolation and the more awareness and more conversation that’s happening the better for everybody involved. So, thanks. I really appreciate it.
Brad Caruso:
Love it. Um, so I guess just to start, how did, how did you get involved with the Epilepsy Association?
David Manchon:
Yeah, great question. Um, I never saw that this angle of my life, uh, uh, attacked would happen. Um, but I was a, uh, high school teacher and a, uh, wrestling coach, um, for many years. And, um, throughout that time, uh, through my 20 years in education and coaching, I, I crossed many different individuals, uh, and one of my student athletes, um, as they grew older, I, it, I found out that they had epilepsy. And throughout their time in school, um, they would have seizures. He would have absence seizures. Uh, so I remember very specifically many times thinking, uh, this young man wasn’t listening to me or was just spacing off or daydreaming, and I wasn’t getting through to him. Um, and then I reflect back and say, how many different students, uh, maybe do teachers not realize or having some kind of a seizure and don’t realize it.
David Manchon:
Um, I found out as he grew older and, um, throughout his, uh, uh, last couple years of high school, uh, and then into college, uh, they developed into grand mal seizures. Well, this individual was connected with the Epilepsy Association, and, um, I learned a lot and got, had an opportunity. And I think through my, um, abilities as a coach and, and growth and, uh, education, um, they asked if I would, uh, want to get involved with the Epilepsy Association. So, um, through that relationship, I became involved with, uh, the Epilepsy Association. And then, um, the Epilepsy Association has been around for over 60 years, and the gentleman who’d been running it for the last 28 years, uh, had decided that it was time to step away. And, um, for whatever reason, they thought I was the good fit to take it forward.
Brad Caruso:
Nice. <laugh>, how do you, how do you feel today? <laugh>? Yeah.
David Manchon:
Yeah. I tell you what, it’s been super exciting. I’ve learned a lot. Uh, I enjoyed it. Working in the nonprofit sector is certainly, uh, a different challenge, but I certainly enjoy it. Um, the impact, uh, that I get to see an individual’s lives and to, to know that there is an impact to help make these people’s lives better has just been tremendous.
Brad Caruso:
Yeah. And I think your purview, certainly your personal connection, I, I always talk about this, but your personal connection certainly helps immensely. And, and, you know, being an educator, experiencing it firsthand for 20 years and then now coming to lead the nonprofit, you know, you have a perfect candidate to do that. ’cause you’ve seen it, you know, you’ve been around it, you know what some of the issues are, um, related to it. So I think that’s, I think that’s phenomenal. I can you share a little bit more about the association itself? You know, what, what work you do, some of the programs you have, you know, how, how you help.
David Manchon:
Oh, abs, absolutely. Um, so first and foremost here, we, um, at the Epilepsy Association, we are an awareness, uh, an advocacy organization. So anywhere, anytime anybody, uh, has a seizure disorder or a family member, uh, finds out a child or a family member has one, we’re here to bring that community together so they can find the support they need so they can find out they’re not alone, so they can get the resources, uh, that are available. And with the world age of the internet, and, uh, with the world of the way it is, there are resources everywhere we can help you, no matter where you’re at in the world, find, uh, that support and that help online, uh, and help you in your area. Um, our other mandate is, uh, here in central Florida, we are, uh, one of five epilepsy service providers who actually provide medical services, uh, in treatment to those individuals who have seizure disorders, who do not have insurance or are underinsured. Um, so we actually, uh, take care of, uh, uh, appointments with neurologists, epileptologists, uh, give EEG do a EEG testing and take care of those things for those who do not have healthcare in any other way.
Brad Caruso:
Nice, nice. Awesome. Yeah. So, so certainly an in integral component to anybody experiencing epilepsy, certainly, uh, certainly you’re, you’re a valid and a, and a strong resource for them to reach out to. Can you share some stats to help our audience understand a little bit who’s affected, how they’re affected, you know, the, the, the volume and, and, uh, scale, I guess you can say?
David Manchon:
Yeah. So currently there’s more than, uh, you know, one big stat is, uh, in the United States, over 5 million people, uh, have experienced or dealt with epilepsy, and over 3 million are dealing with active epilepsy, meaning they’re, they’re currently having seizures and, and dealing with, uh, keeping those, getting those under control. So, um, statistically one in 26 people, uh, are, will have epilepsy at some point in their life. And when we say epilepsy, we’re talking about recurring seizures, right? If you have two, two or more seizures, uh, uh, you are considered to be, uh, epileptic. Um, so one in 26 people will develop epilepsy at some point in their life, one in 10 people will have a seizure event. So, um, when you think about that, think about the number of people you know, and you’re like, well, wait a minute. Um, that gets to be quite a few, uh, uh, individuals, but it is a disease of isolation where people don’t share it.
David Manchon:
You don’t necessarily see it. Um, so it gets to be, uh, something that you don’t think about. But I think most of us throughout life can maybe think of a time when maybe we’ve witnessed a seizure in some setting. But most of us, when we think of seizures are thinking of what are called tonic-clonic seizures, um, which have been referred to as grandma in the past, where someone is actually going to stiffen and then shake and, uh, a fall down and that, but there are so many other, there are over 40 types of seizures. Um, the gentleman I talked about earlier as a young man had absence seizures where it just looks like they’re, they’re spacing off or, or, or staring out into space, uh, gazing. Um, and, um, yeah, so, uh, it’s a lot more prevalent, uh, than people thinks. However, 70% of people who do have seizures can find that treatment that will, uh, get that under control through either medication, um, or through VNS or RNS. Is it
Brad Caruso:
Curable or is this a lifelong You have it, you’re always gonna have it.
David Manchon:
Yeah. So curable is kind of a, a, i, I don’t like to say
Brad Caruso:
Wrong Word, <laugh>.
David Manchon:
Well, yeah. ’cause technically, uh, if people, it’s not curable, epilepsy can affect anybody at any time, and we don’t know all the reasons why people have seizures. Right? Um, you know, again, uh, you got a large percentage that they cannot pinpoint why someone has a seizure. Um, so it, it, it’s just, no. Is it curable? That’s probably the wrong word. Is it manageable? Absolutely. So you’ll hear people, you know, for the most part, epilepsy, uh, the majority of epileptics, uh, that are having seizures are young or later in life. However, that does not mean anybody at any time can have them. But a lot of times you’ll hear people talk about children growing out of seizures or in that, so it’s very individualistic, uh, make sure you’re, you know, talking with your epileptologist or your neurologist, uh, and you have, uh, have that plan. But it is definitely manageable. You can live a normal life, a long life. You just have to be aware of what it means for you individually.
Brad Caruso:
Yeah. And identification, I think, with, with anything is certainly important and, and knowing that there’s resources to help. Um, so, you know, I know, I know I had a friend, uh, and coworker here who, you know, he told me he played sports, uh, football in, in high school, and, you know, he experienced a couple seizures. And what I found out about that was not only, you know, does it affect you at that point in time? Time, but also, like if you indicate in the future that you have had seizures on applications in other places, there’s limitations to what you can and can’t do. Uh, or at least from what he told me, which is, which is interesting, he ended up going to the, uh, the National Guard, and I know that, I know they were very keen on asking him about that <laugh>. David, from your perspective, you know, what, what are some of the challenges epileptics face in general?
David Manchon:
Yeah. Um, you bring up a a a great point. There are challenges and you bring up, can, can an epileptic do anything? Well, no, we all have limitations. You know, if, if you’re not the right height, you can’t be a fighter pilot. If you, if you don’t have great eyesight, you know, you, you maybe can’t be a sharpshooter <laugh> or something. Um, but you, everyone has limitations. And epilepsy, uh, certainly, uh, is gonna present some of those. So we like to say you can, you know, live a normal life. However, you certainly aren’t going to be driving a school bus, right? You’re not going to be scuba diving, uh, underwater. You’re not, you’re not going to be doing things that put others in danger. However, there are most jobs, most people with epilepsy under control, they can do, what people become afraid of is letting people know in an interview process that, Hey, I have this, and need to make you aware of it.
David Manchon:
Um, we always are counseling, uh, individuals who are like, they’re going through an interview process and say, at what point do I let this network or do I, because if there’s two candidates and one might provide, you know, uh, to an employer might think that one provides a liability issue, are they gonna get hired? Um, it’s, it’s tough. So people get nervous about that, they get scared about that, so they don’t identify, um, to employers. Maybe epilepsy causes a large dropout rate in the workforce. It also causes a large dropout, uh, rate in, uh, school. So those kind of challenges, if you have a seizure in most states here in the United States, you are, you lose your license, your ability law to lawfully drive. Um, so in Florida, you lose your, if you have a seizure, you are not supposed to drive for at least six months.
David Manchon:
Um, in other states, it can go up to two years. Um, transportation becomes a huge challenge. How do I get to my job? How do I get to school? How, how do these things, you know, manifest? And then how do people get around it? Are they, you know, it’s, it’s, it’s, you get desperate. You’re like, Hey, I, I gotta get to work. I don’t have great public transportation. Uh, maybe I’m driving and I shouldn’t be. And that kind of puts a danger out there for everybody. So you gotta be really conscious. Um, we talk about building that support group, uh, that support around you. If it’s with family or community organizations like the Epilepsy Association, there is help out there, but you do have to find it.
Brad Caruso:
Yeah. And I, I, I think this, you know, this, uh, you know, epilepsy, it itself and, and, and seizures in general, I, I think it’s definitely, as you used the word before, manageable, um, but it sounds like, it sounds like it would be very difficult going through it or having it, or having seizures or have not knowing when it’s gonna affect you to live your day to day. And it sounds like organizations like yourself are very well needed to provide assistance. And even in, in this conversation, I mean, there’s a lot of things I never knew before, so, and I’m have a lot more questions, so we’re gonna get a lot more fun facts out there. But yeah, I mean, I’m, I’m learning, you know, a lot about it, and I think it, I think it’s interesting. And, and just to your point of how many people are affected, I mean, you know, one in 26 is not a small number.
David Manchon:
The stats have changed, but I think it’s the fourth largest neurological, uh, disorder period. I mean, uh, uh, you know, so it’s, it’s very prevalent, but I, what I can emphasize is building, um, a support system. And, and part of our deal is to educate people, let people around, you know, so they can handle things appropriately. They’re not afraid of the disease. The more awareness out there, the more people understand seizures are not as uncommon as you think. And when a seizure happens, it isn’t most of the time life-threatening or dangerous at the moment. It is something that people live with, they manage, and they do, they are productive and should not be shunned or steered away from to be involved. The more people around you that know your condition and can help you manage it, the safer you are, but at the same time, the more people out there will be willing to engage with you, and you can become an advocate.
Brad Caruso:
Awesome. Yeah, and I think that’s what a lot of us need to learn more of is, you know, when you are aware of it, you know, how can you help? And you should help, because obviously, you know, everyone, everyone’s our brother and sister these days, and you know, there’s person next to you, person on the left and the right if, if you have the opportunity to help. I’m sure you want to, but I think a lot of people probably don’t know how to, uh, you know, I’m a first responder outside of here, and I, I think the general public doesn’t know how to respond to something that happens right in front of them because either they were never taught, or the class they took in college they didn’t listened to or, you know, whatever might have would’ve caused it. But, um, you know, from your perspective, how do I respond? Let, let’s say I’m at work, person next to me at my desk has a seizure, drops to the ground, or, you know, as you said, maybe sitting there and staring, but, but not responsive. What do you do? What, what’s the, uh, what’s the protocol here?
David Manchon:
Great question. The, uh, first and foremost, you need to be there for that person. So don’t panic and don’t run away. But, um, real quick, if they’re having a ton of clo seizure where they’re, they’re stiffening and, uh, and dropping, um, first off, you wanna make sure they’re safe. You wanna make clear the area. I know growing up, we were taught, you know, put something in their mouth. So if they bite down, they’re not biting on their tongue or not swallowing their tongue, that is absolutely not what you want to do. You don’t wanna put anything in their mouth. They cannot swallow their tongue. They can’t, uh, and that, and by you getting near their mouth, you put something in, in that, uh, they clench, you’re gonna lose a finger or something out that you wanna make sure their heads to the side. So if something is coming up that they’re not choking on it.
David Manchon:
So you wanna make sure that you wanna cushion their head if you can. The other thing is, uh, uh, human reaction is, I wanna hold you, I wanna restrain you. I wanna make sure you’re not, do not, you don’t wanna do, you don’t wanna restrain them. You wanna make sure the area’s safe, they’re safe, um, and then just be there when they come out. It takes, most seizures are gonna be a, you know, just a, a few seconds to a two minutes or so. Uh, they are not long. Um, the person is not in pain during the seizure. Certainly if you, you’re there, you and you protect ’em, they’re probably not gonna get injured. Um, and then they’re gonna come out and they’re gonna not want to, they’re gonna go, oh my gosh, what happened? A lot of times they don’t realize it happened. Um, so you, and you’ll be there and you want to make sure you’re calm.
David Manchon:
So they’re calm. Then most likely, if it’s not their first seizure, they’ll understand if it is their first seizure, they’re gonna be nervous, they’re gonna be scared. And I would tell you, if it’s someone’s first seizure, you’re calling 9 1 1. That’s a absolutely. Um, if it’s someone who has seizure, has epilepsy, has an identifier, a wristband or something, uh, a lot of times on their cell phone, um, there’ll be emergency information for someone who has a, a epilepsy. If you can ident, if they, you can identify her, they let you know that they have seizures, they’re gonna direct you. But most of the time, uh, a call to nine one one isn’t going to be necessary. Um, times when you would call 9 1 1 is if it happens, if you see someone witnessed someone having a seizure and they were in water, um, you need to call 9 1 1. ’cause, uh, they could have inhaled some water there if they’re pregnant.
David Manchon:
Um, if you cannot figure out if they have, uh, ever had a seizure before, call 9 1 1. It’s better to be safe than sorry. Uh, but most of the time, um, they’ll come out of the seizure, they’ll have experience, they’ll help you, uh, come around, um, and then, uh, you know, go from there. Do not put anything in their mouth. Do not try to feed or give them food or water while they’re having a seizure. Um, uh, basically that it’s, it’s, it’s really not complicated. It’s just more don’t panic, be there, calming force. And then, um, after that, uh, most of the time, uh, they’ll be able to lead you, uh, into what to do. There is an exception. If they are having a seizure for more than five minutes, that’s very dangerous. Uh, they’re in a status epilepticus and you need to call 9 1 1. They do need emergency help. That is a different condition. If it progresses, um, and is not stopping, or if they’re having multiple seizures, they need to go into the emergency room. Um, that is, that’s where it starts to get dangerous.
Brad Caruso:
And this may be a silly question, but, you know, what does a seizure look like? Like how do you recognize it as opposed to, I know we do a lot of trainings on, you know, someone may go into cardiac arrests or someone, you know, different, different things happen. You know, what, what’s the telltale sign that, uh, that, you know, that’s the case to, you know, basically do, do nothing. Right? I’m not gonna go to CPR someone having a seizure. Right,
David Manchon:
Right, right. So, um, when we’re talking about seizures in this regard, we’re talking about a tonic-clonic seizures, tonic clo. Yeah, a tonic-clonic or what’s, uh, referred to as grand mal seizure. And that’s gonna be someone who stiffens and then starts to, uh, viciously shake, uh, the clenching of the muscles. Everything is very jerky. It’s going to be very surprising. It’s gonna be very stiff. Um, there are people who have other types of seizures or maybe a pseudo seizure, um, which is more of a psychological, uh, uh, malady, and then that someone may also fall the floor and do that. But it will, you will notice now a lot of children, um, I have what are called absence seizures, and that’s the daydreaming spacing, and just, they just are stopping. Um, and it kind of looks like they’re just losing time for a few seconds. They have no idea when they, they might be doing an activity, go into an absence seizure and immediately come out.
David Manchon:
They’ll have no idea they had that seizure. They’ll just continue with what they were doing. So you might not notice all seizures. Um, but I will tell you as a parent or as a teacher, is that pay attention. If someone is in the middle of an activity, uh, maybe they’re coloring, maybe they’re right, and then all of a sudden they just stop and look like they’re spacing off, and then all of a sudden they come back and continue with what they’re doing. They may have had a seizure, uh, and that there are 40 different types of seizures out there. I’d hate to tell you, uh, that you would notice ’em all or what they are. Um, just be aware, um, there are drop seizures where someone will just lose all muscle tension and, and, and that’s why it’s a drop seizure. Um, so there’s a lot of different ways it can manifest, but most of the time when we’re talking about first aid, we’re talking about a tonic-clonic, um, seizure or an absence seizure.
Brad Caruso:
Understood. Yeah. Appreciate that. When did they get involved with you as the epilepsy association? Or, or when, when, you know, when do you come into that equation to help?
David Manchon:
Yeah, the minute, um, someone finds out this is something in their life, uh, a seizure disorder, either the person having it, a family member, um, we’re here to support, um, all areas of it. I, you gotta, you know, I have a concern, mom, who called the other day, your 28 year son, had a, a seizure for the first time. Um, and, um, he does, no, he doesn’t wanna reach out. He’s not interested. But the mom needs, wanted support. What we can, organizations like, what we can do is we bring that community together, or we can find people who have walked that journey or in that journey to connect you with. So it’s, um, you know, we have events, uh, throughout the year, and these events are happening all over the country, all over the world in your area if you’re not in central Florida. But, um, most of these organizations such as us, are, um, advocacy groups and will connect you to support groups or, um, I always think of the young, uh, uh, parents who, um, have all of a sudden, you know, are finding out that their, their child is having seizures and, um, where’s that support?
David Manchon:
How do I, that’s a scary thing. And it’s like, let’s, there are more of you out there that our job is to help connect you to that community, to that support, to those resources. The internet is also a, a fabulous place for, for information. Uh, it really is. We, uh, manage, uh, multiple, uh, websites. One is epilepsy u.com, which is going to have over 10,000 articles on, uh, from around the world, uh, about stories, about research, um, about treatments, um, and, and, and supports. Um, but you can find that throughout, um, some fabulous organizations out there is the Epilepsy Foundation, the Epilepsy Alliance, um, uh, you have Anita Kaufman Foundation. So if you are not in the central Florida area, you have something in your area that, um, where you can get that support and that help. On the other hand, if you can’t find it, contact us. We will be glad to help you find that resource, um, out there. Also talking to your doctors, your neurologist, they can connect you and, and, and with that, that extra support, um, in that. And I just think that’s a crucial thing because, um, it’s a scary lonely disease that, uh, people often could drop outta society because they don’t, uh, have the resources, uh, to be able to manage it.
Brad Caruso:
Awesome, awesome. Uh, I was reading on your website that something about about yoga being, being helpful is, is, is that, uh, is that, is that true that, that yoga is a helpful, uh, helpful strategy?
David Manchon:
Okay, so here, yes, <laugh>, it is true, uh, but not yoga, uh, uh, alone. I mean, there, I always, we do a, we have, uh, we just launched a podcast, and one of the episodes we did is, um, throughout the episodes is talking about how to, uh, manage it. And what we’ve come up with through doing these is take care of yourself. Self care is the most important thing, and yoga through, uh, uh, just in general is good for you. But yeah, as an epileptic, it’s certainly gonna be, uh, helpful. Uh, anything you can do for self-care, your diet is a huge component. Um, uh, a hundred years ago, the ketogenic diet was developed for children with epilepsy. That’s where it comes from.
Brad Caruso:
Oh, interesting. I didn’t know that.
David Manchon:
Right. Um, so, uh, your diet, um, you know, certainly if you’re, uh, you know, any, you know, alcohol or drug use is, is not a good idea for anybody health-wise, but especially someone who’s having seizure disorder. Um, so if you take care of yourself, you’re getting enough sleep, you’re eating well, you’re exercising, you’re taking men, taking care of your mental health, and I believe yoga comes into that, right? Mm-Hmm, <affirmative>
Brad Caruso:
A hundred percent
David Manchon:
So most of the time when we’re, we’re talking about how, what should I do to, to manage my epilepsys, it’s like, yeah, with the same things you should do to ma that everybody should do to manage their, uh, uh, life, to have a, a better, more, he, uh, a healthier, uh, uh, life. So yeah, yoga is, uh, is effective in helping you manage your epilepsy.
Brad Caruso:
Love it. <laugh>. Yeah, and I, you know, I’ve, I’ve, I’ve, uh, I’ve, I’ve spoken to a lot of folks, uh, on the podcast and, and just a lot of the podcasts I listen to personally, and I, I, you know, I think it, you can’t reiterate it enough that, uh, you know, personal health prevents a lot of, uh, a lot of things. You know, we found it out through covid. We found it out through, as you just mentioned, we found it out a lot of different disease and disorders. You know, one of the number one things they find in all of them is, is, you know, unhealthy food that you’re eating or, or not, not exercising daily for x number of minutes or, you know, whatever it might be. So, you know, I think, I think one that’s also a key takeaway, not only related to epilepsy, but in general, you know, personal health actually, uh, is a key factor to a, a, a good lifestyle. And, and, you know, being free of some of the challenges that come, uh, come up. So,
David Manchon:
And I, I would tell you, yeah, that the mental health piece is, is huge. Find someone to talk, uh, uh, to talk about it. Find someone where you can share, you know, how it, how you feel, find someone where you know they can actually help you. That mental health piece is tremendous. This, this, you can imagine, um, people with epilepsy can, it can bring on the onset of depression, uh, loneliness. I mean, it is just, uh, can, you know, it is life changing, but it is not life ending. Um, I think that’s important, but I think having people to talk about it and, uh, finding those resources, and again, that’s, that’s a lot of what we do.
Brad Caruso:
I love that. I can imagine anxiety disorders coming out, just being fearful of what’s gonna happen because you’re not sure or you’re afraid to go, you know, you might be afraid to go out because, you know, uh, I, or afraid of, you know, afraid of public, public view and things like that. So yeah, I can, I could definitely, uh, see that angle and, and it’s helpful to know that, you know, you certainly assist with that. And, and, uh, you know, epilepsy Association helps on the, the mental health side and can help with counseling and things like that. I think that’s, that’s phenomenal.
David Manchon:
Absolutely. Yeah. We’re connected with a, um, a whole network of different nonprofits and organizations, uh, that offer services outside of, that aren’t directly the seizure disorder, but all of a sudden it’s mental health. Or maybe you, you, you need help finding that job. It’s, uh, it’s gonna be vocational training, it’s gonna be, um, if you’re few, if food is insecure, it’s finding the, uh, getting that stability where you can get that life and get it managed and back online. One thing I do wanna bring up Brad and make sure that we don’t miss is that, um, school children, right? So schools, um, are, are one of your, for children, uh, is a partner. You need to, uh, as a parent, uh, you need to partner with the school, with their, the nurses, with the, uh, administration, um, and ultimately, uh, with the faculty. Um, so they, they know what’s going on.
David Manchon:
You need to have a seizure action plan in place. You need to make sure that your child knows they’re safe at school. Uh, and the better job the school does with that action plan and with how they’re prepared, the better that experience for that child is, if, if, if they have an event, um, uh, in that. So again, don’t be afraid, uh, to, to talk to those people who are engaged in your child’s daily life. The other things, what I call majorly important is don’t miss your medication. Make sure you’re, you, you have that catching there. One of the biggest, uh, reasons for an onset of a, a seizure is you missed your medication, you didn’t get enough sleep, you’ve got a lot of stress in your life, and you’re not managing it, um, though, uh, those things. But, um, and talk. Make sure that you are regularly in conversations with your, your, your healthcare professionals and following what they are saying and what they’re recommending. We talk in generalities, but again, epilepsy’s, a very personal disease at your treatment is very much personal.
Brad Caruso:
How can the public donate to you or, or help, help you, uh, in your endeavors?
David Manchon:
Oh thanks for asking Brad. Um, to donate to us, you would just, uh, go to www.epilepsyassociation.com, um, and go to our, our website. And right up there in the right corner, it says, Donate Now. We need your donations. Uh, again, we give medical treatment to those who cannot afford it. We do pay for it, um, uh, and we make sure they are getting treated. But that’s where you’d go. You go to epilepsy association.com, um, and hit the donate button. Um, other ways to support us if you’re in central Florida, um, we have events throughout the year. Um, we get together for walks for picnics. We have a big event at Disney every year where we bring, uh, people from all over the southeast and some across the country to get together, uh, and not only learn and get education, but to, to, again, build that community. Other ways is to follow some social media. We’re at LinkedIn at the Epilepsy Association. We’re on Twitter, or, or I guess it’s X now at, um, epilepsy, Florida. You can follow us. We’re on Facebook, so just getting involved following us. But, uh, yeah, we can, if you want to donate, please go to our website, click that donate button, and we, uh, certainly, uh, will appreciate and can use that help. It’s
Brad Caruso:
Great to hear. And, and, uh, just to reiterate, uh, the podcast.
David Manchon:
Yeah. So our podcast has been launched. Uh, we launched it back on October 1st. It’s called Electric Avenue, navigating Life with Epilepsy. And, um, a lot of the stuff we talked about today, we do talk about on, in more depth on that podcast. But some of the, uh, um, the one we just released is a, a is a conversation with a, um, a gentleman named, uh, Eric. And he happened to be a, a high level athlete, uh, in college, um, and had to manage his epilepsy with that. But then he is also now, he is a, um, he travels, um, in sales across the country constantly. And I’m like, how do you manage a life that active with epilepsy, with traveling? And it, it, it’s great to hear how he has built a support team, but what does he do? What’s he got in place and how is he able to, to function like that?
David Manchon:
He’s blessed. He’s got a great company that supports him, a great family that supports him. But you can imagine, what do you do if you have to get on an airplane a couple times, uh, a month and stay in a hotel? How are you gonna make sure that you’re safe? But, um, just some great items, uh, people to listen to, things to talk about. And then the most important thing about Electric Avenue is we are looking for, um, the input of our listeners on, on how they navigate life with epilepsy. So I appreciate that. Thanks for the plug.
Brad Caruso:
Yeah, no, love it. Yeah, always, always wanna, uh, you know, support a fellow podcast. And certainly, uh, you know, I I think it’s highly relevant to our conversation today, and I think one of the ways that you gather information is just by hearing how others are affected and hearing those stories that they tell, and having the opportunity to talk with you and others at your organization. And it’s another, another connection point. So I think it’s awesome that you do it. I think it, you know, podcasting is certainly, uh, you know, one of the most, most listened to mediums for information these days. And, uh, it’s a great way to just have a conversation about a topic and, and share it to the world, and you can access it any time. So yeah, I’m, I’m a huge advocate, but yeah, love that you’re doing it. I love the name too. I could probably speculate, uh, as far as how you came up with the name, but, uh, yeah, I, I think it’s awesome. I, I love, I love hearing how people come up with the name and how they do that. Yeah, it’s great.
David Manchon:
Yeah, we, we went through whole process and, uh, uh, we haven’t yet gotten rates to the song, but <laugh>
Brad Caruso:
One day
David Manchon:
We went through the whole process. And so, um, but, uh, yeah, we’d love, uh, I’d love for your y’all to, um, jump in. Uh, we’ll be releasing a, uh, an episode every two weeks, um, and, uh, a lot of interviews, a lot of, um, just life experiences where you can connect with someone who is, uh, probably experiencing some of the things, um, uh, that you do experience. I think our next podcast, um, that we’re getting ready to do is with a mother and a daughter who have, uh, navigated a life, um, and, and their perspective. So it’ll be a, uh, a good one too. So join us. Um, and since it is new, it only gets better.
Brad Caruso:
That’s right. <laugh>. It does get better over time, I promise. Awesome. Well, David, you know, thank you so much for being on the show today. Um, you know, I learned a lot. I’m sure our audience learned a lot, and I’m sure your audience will learn a lot more too, just having, you know, more, more information out there. But thank, thank you so much for sharing your time today and, and, uh, and the great work you do at the Epilepsy Association.
David Manchon:
Al, it’s my pleasure. Thank you for having me. If your audience members have any questions, they can always email us at [email protected]. If you’re in the central Florida area, join us for an event. Uh, and or if you’re not, look for the events in your area. They are out there, there’s organizations like us throughout the country.
Brad Caruso:
Love it. Love it. And Warriors out there. Thank you for listening. Thank you for spending the time with us today. And, and obviously, you know, a lot that you learned from this, this episode is, is related to education on epilepsy itself, uh, that there’s a great organization out there, the Epilepsy Association that can help you. And, and David certainly shared a lot of resources on a lot of levels that can help, but, uh, you know, a lot of people are affected significant amount of volume and, uh, you know, it’s not easy to manage. So certainly appreciate, appreciate you listening. Appreciate the time, and, you know, subscribe and meet us right back here for another episode of Withum’s Civic Warriors in the near future. Thanks everybody.
