Episode #143 - Rocking for Research: The Inspiration and Impact of Joey’s Song featuring Mike Gomoll
Dravet Syndrome – honoring my son’s memory by raising funds for epilepsy awareness and research
Episode Overview
Episode Transcript
Kelly Cervantes:
Hi, I’m Kelly Cervantes, and this is Seizing Life, a monthly podcast produced by CURE Epilepsy. Today on Seizing Life, I’m happy to welcome Mike Gomoll to the podcast. In 2010, Mike’s son Joseph passed away just shy of his fifth birthday. He had suffered from a debilitating form of epilepsy called Dravet Syndrome. In memory of Joe, Mike created Joey’s Song, a nonprofit organization and multi-artist concert dedicated to raising funds for epilepsy awareness and research. Mike is here to share Joe’s epilepsy story and discuss the creation of Joey’s Song, its amazing growth and its evolution into a multi-day, multi-venue music event called the Freezing Man Festival. Mike, thank you so much for joining us today.
I am completely and totally unequivocally looking forward to this conversation. We’ve known each other for years now, but most of our conversations have revolved around Joey’s Song and music and musicians, and I think this is one of the first times that I’m really going to get to do a deep dive with you and get to know your son, Joe. So I am looking forward to that. Just to sort of kick things off, introduce us to Joey. Who was he? What did he love? What are some of your cherished memories?
Mike Gomoll:
Absolutely. Let’s talk about what made him who he was, right? Joe had Dravet Syndrome, which is one of those rare pediatric epilepsies. That’s just the definition of heinous in the dictionary. If you open it up, it just says child with Dravet syndrome. And so it made Joe nonverbal, but it did not make him non-active or non-involved or non-engaged. He was the master of his world, and he made sure that everybody that was in it was a part of it. So while Joe’s Dravet made him nonverbal, he could listen and understand music and love music, and that’s why we’ll get into why our charity is the way that it is as well and what it’s called.
But for example, if we had people over and Teletubbies came on, or Wiggles came on and it was a song Joe particularly liked, he would make sure that everybody got up and danced. And so he would grab everybody’s finger and lift them up. And his word for dance was D. So he would just walk around and go, “D. D.” And he was not happy until everybody was up standing and dancing.
Kelly Cervantes:
I love that so much.
Mike Gomoll:
Yes, he was active in his world. He was bound and determined to control his world. He didn’t know his world was uncontrollable, and that’s the beauty of children is they don’t know that. And so it was always… And music was just a big part of everything after unfortunately, the regularly occurring seizures, we would go when he was postictal and lay up in bed and watch Baby Einstein or those kinds of things as well. So music was his moderator, I guess, as you could say, or his connection to the world and do all of those things.
So he was happy. There’s some interviews with my son over the years and he says, despite everything life threw at him, Joe just was bound and determined he was going to love it and live it, and he did.
Kelly Cervantes:
I love that so much. Music starts to play an incredibly integral part in our lives, especially I’m finding with those that are non-verbal because it is this way that they can still communicate and it’s pretty special and amazing. Talk to us about Joe’s first seizure and how Dravet syndrome and epilepsy came into your lives.
Mike Gomoll:
So Joe was down with his grandma and grandpa and his two brothers and sisters, and my wife, Nori, in Chicago, and he was about six months old probably. I’d have to do the math on that. And he was on grandpa’s lap and he was having a seizure, and grandpa didn’t know it, but his aunt walked by who has a child with special needs and recognized it right away. So the good news is they literally lived right across the street from Illinois Masonic. They lived right on Wellington down in Chicago, for those of you that know the Chicago area, walked him over there and they did what a lot of… And the seizure wouldn’t stop. So they certainly got him over there.
They did what a lot of people do on the first one, they did the spinal tap, they did all of those things, and then we were told, “Oh, it’s probably just febrile seizures.” And all the stuff we’re all told on that first seizure. He was in the hospital for a couple of days and we were pretty well assured that it was going to be okay, that this is not uncommon for kids to have seizures. And then, I don’t know, probably a couple of weeks before the second, and then they started coming faster and being more severe. Early on his seizures were simple. I would describe it to people as he would’ve little twitches more than anything else.
When one of the doctors ask us, it was like he was trying to start his motorcycle and it just wouldn’t work. But then as it grew and they became more severe, and then we started having them, that, as I said, wouldn’t rectify themselves, but they were pretty classic tonic-clonic seizures. That dreadful yelp that you’ll hear from a lot of people before they have it. And then he would drop. So our house was all seizure protected, so there were no sharp corners, but we went for several years, unfortunately, being misdiagnosed. It was several years before even heard the phrase Dravet syndrome, unfortunately.
Kelly Cervantes:
I want to get into how you were first given the Dravet syndrome and what that took, and also why you think it took so long for him to be properly diagnosed.
Mike Gomoll:
So let’s do the second part first. Joe was adopted from Guatemala, so all three of our kids are adopted. And so his neurologist, and don’t take what I’m about to say as fact because after 12 years, stuff goes from fact to kind of stuff in your brain. But my understanding is the Dravet’s test is something that would’ve been part of a newborn screening and something they would’ve caught. And the doctor just didn’t make the… Because Joe didn’t have his first seizure until he was six, eight months. And so the doctor assumed that we would’ve known if Dravet was something back then. So we went to the same neurologist here at UW and they tried everything.
And finally, after a couple of years of no progress, I went down to Children’s in Milwaukee, and I was sitting with Joe on my lap, and I don’t think we were more than two minutes into my meeting with the neurologist down there, and she said Dravet’s instantly. And it was the first time I had ever heard the phrase. And so as we probably all do and all did at the time, we talked about it for a little bit, got in the car and I immediately called my wife and I said, “Start Googling.” Because it was brand new, but he had never obviously responded to any medications because he was being misdiagnosed and mistreated. And that was leading to the frustration.
And we found out sadly afterwards that some of the medicines that he was given in those three year period were exact opposite of what he should have been given. It actually made things worse, which is again, not an uncommon thing as well. So we quickly went from he’s got epilepsy, but we’ll eventually find a medication to understanding what it meant to have a child diagnosed with Dravet’s.
Kelly Cervantes:
And give us a little lay person background, what is Dravet exactly?
Mike Gomoll:
So as probably a lot of the folks that listen to your podcast know epilepsy is a spectrum, both in terms of causes and how it manifests itself. I always get the letters wrong in my head. Joe’s was the sodium channels in his brain weren’t doing the SCN1A variants. It’s some combination of those letters.
Kelly Cervantes:
That’s the one.
Mike Gomoll:
That he had, that is also the cause of many of the other ones as well. And so Joe would have pretty regular seizures every couple days or so, about every three or four months he would have one that wouldn’t stop on its own. His timing was immaculate. There’s one time I remember he was all dressed up in his coat ready to go to grandma’s house for Thanksgiving and literally dropped at the back door. And it was one of those that would not resolve itself on its own. And so the kids went off to grandma’s house with mom and I went into the ambulance with Joe, and we spent the next couple of days in the PICU. It made him non-verbal.
The prognosis at the time, I know things have gotten a little bit better with some of the medications, the Epidiolex and some of the CBD stuff that’s out there that was not available at the time. The prognosis was not good. He would’ve needed care his entire life, and he would’ve continued to be non-verbal. So it’s one of those that creates a very special needs child out of it. Since his passing, while I’ve done a lot of work to try to help find cures, I haven’t become an expert on Dravet, but I know the prognosis has gotten better for kids with it, especially if it’s caught early and there’s things they can do.
But I don’t know how much of his special needs were because of the pounding from the seizures and how many were part of that sodium channel thing. And I’m sure doctors know more than that, but it’s up there with Lennox-Gastaut and Doose and all of those just horrible, horrible pediatric epilepsies.
Brandon:
Hi, this is Brandon from CURE Epilepsy. Did you know that 30% of those diagnosed with epilepsy do not respond to current medications? That is why for 25 years, CURE Epilepsy has been committed to inspiring hope and delivering impact by funding patient-focused research to find a cure for epilepsy. Learn more about our mission and our research by visiting cureepilepsy.org. Now back to Seizing life.
Kelly Cervantes:
So Mike, you mentioned that there was a lot of incorrect treatments prior to the Dravet diagnosis. What did the treatments look like once you had the diagnosis? Were any of them effective? What were the side effects like?
Mike Gomoll:
So this was 2008. And really at that point, at least in our world, the only thing that was out there was this drug from Russia called [inaudible 00:11:14], was the only thing that was having shown some effectiveness on Dravet’s, but it literally felt like I was in some sort of bad 50… I was buying it on the street corner, you could only get it from Russia, and there was all of this shenanigans going on, and it really didn’t have a lot of effect for Joe. I think he was only on it for about a year before his passing. So nothing ever really worked.
We were on seizure watch and trying to keep him safe and happy. And the good news is he did not make it difficult to keep him happy. That was the good news. It would’ve been equally just as heart rendering if he wasn’t, but he was still ready to take on the world, even if it was the world as he saw it. But we really never found anything. There was nothing available in the US that had any effect back in the early 2000s.
Kelly Cervantes:
And then unfortunately, you lost Joe just before his fifth birthday.
Mike Gomoll:
Just a couple of weeks before his fifth birthday, March 30th, 2010.
Kelly Cervantes:
I’m so sorry.
Mike Gomoll:
Well, you and I are part of a club that shouldn’t exist.
Kelly Cervantes:
I agree. I agree. You mentioned that you adopted two other children along with Joe, Julia and Sam.
Mike Gomoll:
Correct.
Kelly Cervantes:
Can you talk to me a little bit about the impact of having a brother with disabilities and the impact of his loss as well?
Mike Gomoll:
The beautiful thing about kids, especially when they’re young, is they only know what they know. So they knew that Joe had severe issues, and they knew that having seizures and having the ambulance come by on a regular basis was not how everybody else was living. I don’t know, I can’t say it was by a great plan, but the way that my wife and I handled it was, Nori took care of Joe, and then I took care of the two older ones’ breakfast. Now, fortunately, I worked from home even at the time. So that made that manageable for us to do that. And again, I’m sure you’ve heard this a thousand times. We did everything we could to make their life as normal or regular, I don’t want to say normal, but as regular as possible, right?
Little league and dance and all those things that you do with kids. So for them, it was really at home that they noticed the difference and they knew that. Like I said, if Joe would have one of his really bad seizures, that dad was going to go away for a little while, spend a couple of days at the hospital with him. When Joe passed, again, I’m going to have to go to the calendar in my mind. So Julia would’ve been 10 and Sam would’ve been eight, and I don’t think it really registered with Sam at eight. Now, I had happened to be down at Disney at the time when Joe passed. So I was with the two kids, so got the 10 P.M. phone call kind of stuff. And literally it was then up as we tried to get home.
It’s obviously different now that he’s 22 years old, but I think for Sam it was, well, Joe was there when we left, and he’s not here anymore when we came back. I don’t know the concept of death when you’re eight years old with a sibling. Julia was impacted. There were lots of tears. But now both of them have certainly… I think it has made them more empathetic human beings and more understanding of differences. Now, they also are impacted. They’re both Guatemalan by birth and they’re living up in Wisconsin where there’s not a lot of Guatemalan people walking around.
They’ve already dealt with those physical differences that you have, but I think it has made them more empathetic to differences as far as special needs or people that are not like the rest of the population. That’s my 2 cents on it. But I certainly know now that it has made them active in what we do with the foundation and proud of what we do and help doing that. So I know it’s probably cliche, but I couldn’t be prouder of the two human beings they’ve become.
Kelly Cervantes:
I love that. So not long after Joey passed, you really started kicking off these fundraising efforts, starting with these compilation CDs. Talk to us about, before we get into the grander Joey’s Song concerts, sort of where this all started.
Mike Gomoll:
So I spent my college years here in Madison in the eighties working at a thousand seat nightclub in town. So I had been part of the music scene, not a musician, but I was involved in the promotion side of it. And I’m a big music lover, and I had happened to… There was a fella kicking around Madison in those days called Butch Vig. And Butch has gone on to win multiple Grammy Awards and produced Smashing Pumpkins and Nirvana and Foo Fighters and Green Day and his own band, Garbage and all that other stuff. So I had a music background, went off to Chicago to live my life and not be a musician. But when we came back, we came back to Madison, I met my wife and we came here to raise our family because we wanted to raise them in Madison.
Nothing against Chicago, love Chicago, but small town Wisconsin felt a little bit better for us raising a family. And so even when Joe was still with us and we knew the prognosis wasn’t good, I had it in my head of what can we do to help the next family? It’s still a phrase that we use with Joe’s Song a lot, but at that point, he had two older siblings. We were just trying to make it to bedtime every day, let alone start a new charity. But if you put your mind in the way back machine back to 2010, people were still buying CDs, but they were just kind of stopping doing it. It was when streaming was really kicking in. So me, with my immaculate timing, decided to try to make some CDs to sell to raise some money.
I won’t turn this into a TED Talk on what’s involved in clearing music and how you get music for free. But I started reaching out to contacts that I had both directly with me and a lot of, “Hello, my name is Mike. Info at artistsite.com. Can you help?” And we started putting out these CDs, but they didn’t sell because nobody was buying music anymore. It just had literally had stopped. But every time we would put out the CDs, we would hold a CD release party, which is also something you did back in the day. And we were making more money off of the live events than we were the CDs.
Kelly Cervantes:
And you get this wild idea that maybe you can turn that release party into a concert. So talk to us about Joey’s Song, the concerts, before we get into the dramatic, drastic way it is growing this year, which is so freaking exciting.
Mike Gomoll:
So the CDs weren’t selling and not through any genius on my part. Again, everything in here is serendipity. It’s pure luck. Even a broken clock is right twice a day. We realized that putting on the shows was a better way to make money than doing that. And that’s exactly when Butch came back into my life. Garbage did a big show here in Madison, kind of a big homecoming show. Butch and I reconnected, and he said, “What can I do to help?” And I said, “have I got some ideas for you.” And the first was to just come and play a show, right? He’s got a band that’s still there today, the Know-It-All Boyfriends, which is him and Chris from Fountains of Wayne and Freedy and Duke Erickson, and a bunch of really cool people that are kind of a screw around band.
And so I really will get to the answer to your question of how did it turn into what it is today? So they came and did a show. They would do covers, just a cover show with the five of them, and that was it. But that week, Butch was doing some promotion for the show and he did a radio interview or something with a columnist, and my phone starts blowing up. I’m getting calls from everybody. “Who’s coming to the show?” And I’m like, “Butch and Duke.” I named the artist. They said, “No, no, no in the paper he had done his good PT Barnum. And in talking to things that you never know who’s going to show up at a Know-It-All Boyfriend show. So everybody immediately goes through the list of all the people.
Butch has worked with Dave Grohl, Billy Corgan, Billy Joe Armstrong, blah, blah, blah, blah, blah. And so anyway, after the show, I said something to Butch, I said, “Man, you wasted a half a day of my life.” And we kind of laughed, and then we both sat there for a second and went, “That’s a really good idea. We should do that.” And that’s now how it’s turned into this Butch in the band serve as a house band. And we bring all of these amazing singers from literally around the world, come into Madison in January. Don’t ask me how I’m pulling that one-off, and we do these concerts. So that’s how it evolved again, through just at least keeping our eyes open and saying, “Maybe we can tweak a little bit here and tweak it a little bit there.”
Kelly Cervantes:
I love that. So you start this concert series. The first one was in 2015?
Mike Gomoll:
’15, ’16.
Kelly Cervantes:
And from the beginning, you have been donating all of these funds where? Talk to us about that.
Mike Gomoll:
So thank you for… It’s really important that I say this next thing. We are a 100% volunteer organization. So all of those artists that I’ve mentioned or we’re going to mention, come to Madison for multiple days for free. They don’t take a penny. They get a ham sandwich and two beers, and they’re coming for four and five days. They’re not just flying in that morning playing the show and flying out. There’s a whole lot of more rigmarole this. So none of them take a penny. And we don’t have any paid staff at Joey’s Song. So I don’t take a salary and I pay for professional services. You got to pay for accounting and all that other stuff, but we don’t have staff. So we are really efficient in our money.
The lion’s share of the money has gone to CURE. And the reason it goes to CURE is when I thought about where I wanted my money to go, there’s lots of great organizations that handle awareness and patient services, and we also help them out. But the biggest difference in my son’s life would’ve been if somebody 10 years before had started working on a cure and treatments that were effective. So I thought that’s the thing that I can do, is put as much money as I can into that pipeline to get those really smart people that get the lady in the white lab coat to mix the test tubes and make it turn from blue to green or whatever it needs to do, and go, “Eureka.” I know it doesn’t happen that way, but I’m going to pretend it does in my head.
That’s where I felt I could make the most impact. So over the years, I think we’re over a half a million dollars to CURE. I think we’re over that and we’ve done some to Epilepsy Foundation, but it’s mostly to CURE because for me, the research is the important thing.
Kelly Cervantes:
I want to dive into the research that you funded in a minute. I have no idea that it was that much, Mike. That’s incredible. But first I want to get back a little bit. I wanted everyone to understand that this is entirely volunteer and what this money is going for, because I think that helps make what Joey’s Song has become that much more special and that much more meaningful because the event in and of itself is amazing, but it is that much more amazing because of what you are creating out of it. So from that first show, Joey’s Song has grown so much. Talk to us about the evolution of the show and what it has grown into, in particular this year, what people can look forward to?
Mike Gomoll:
Besides wanting to raise as much money as possible, which is the ultimate goal. And I have to keep reminding myself of that because it is kind of fun too. One of the reasons why we’ve had to expand it from one show to, wait for it, six shows, exactly, is because everybody keeps coming back. I will sprain my elbow a little bit patting myself on the back for that. I think it’s because first of all, the cause. It means something. And as you well know, it’s amazing how many people are truly affected by epilepsy when you discuss it. I mean, all of us in the community have the story of you can’t fill up your car without somebody… They see my shirt.
“Oh yeah, the epilepsy. My brother has epilepsy.” So part of it is the cause, but part of it is, and you are married to one, artists by their nature want to emote. They want to tell you how they’re feeling or how the writer of the song is feeling. And so they are emotional people by nature, and they’re communicative people by nature. And so when you can take a cause that means something to them and a way they can do it that fits their ethos, who their zeitgeist, who they are, and give them a chance to do it. And then by pure luck, you give them a chance to do it in a way that they don’t normally do it, right? Because the Saturday show that we’ll talk about is all covers and jams.
So these guys go out and they go on the road for 200 shows, and they play the same set list. Now they’re playing Beatles songs or Stones songs or ACDC songs. So you take all three of those elements and it creates something that people want to be involved in. And the reason we had to expand it to all these shows is I’ve got people flying… Jane Wiedlin from the Go-Go’s is flying in from Honolulu to Madison in January to do this. You’ve got all these people that are coming in and you don’t want them to just sing one song, right? Because the last one we did in January of 2024 was four and a half hours. I mean, we got a cease and desist letter from Springsteen that we were going way too long, and if we didn’t cut this out, there was going to be some trouble.
So what we’re doing now is we still have the Saturday thing with all of these amazing artists that get together, but now we’re going to have full concerts in the week leading up to it. So the Bengals will do a show and Portugal. The Man will do a show and Belly and so on and so on. So it’s because these people want… And I’m not going to tell anybody no. I mean, you tell me if you’re going to tell the Bengals no, right? Or John Rzeznik from Goo Goo Dolls, no. No, you can’t come back. Of course you can come back and we’ll find a way to do it. So besides it making more money because we’ve got more events and more people to buy tickets and all that other stuff.
It’s also a way for these artists to really have an impact and go, “We went to Madison in January.” And now all their friends laugh and they go, “But we did these two shows and they were great, and they raised half a million dollars.” So it’s grown by necessity, but in a good way. I’m overwhelmed and excited at the same time for what that week is going to be like.
Kelly Cervantes:
It’s incredible. Give everyone the dates and where they can get more information about the event.
Mike Gomoll:
So January 8th through the 11th, 2025 in Madison, Wisconsin, you can find out everything you need to know at joeyssong.org. Follow us on the socials. We’re at Joey’s Song on everything as well. Ticket information, donation information, artist information. It’s all kind one-stop shopping as well. So if you’re listening to this from somewhere warm, it’s really not that cold in Madison in January. You should come.
Kelly Cervantes:
You’re cute, Mike. You’re cute. You’re not that cute.
Mike Gomoll:
Exactly.
Kelly Cervantes:
My family is going to be coming in… Miguel has performed in past year there, and this year we’re going to come and we’ll throw Miguel up on stage for something or other, but I’m so excited we’re bringing the whole family and really looking forward to the experience. I’m going to circle all the way back around now to the research piece because it really is… It’s the why, right? Tell us more about some of the grants that Joey’s Song has funded.
Mike Gomoll:
So for our first couple years when the dollar amount wasn’t to the point where it is now, we would just do a grant in general to CURE and say wherever is necessary. Well, fortunately, as more of these artists have come on board, we’re at a level now where we can be part of a taking flight award and all these different categories that you guys have. And so that’s allowed us to direct the research a little bit more. Now, full disclosure, I am a marketing guy from day one. I’m pretty sure I cheated in every science class that I ever had. Sorry, Mr. [inaudible 00:28:40]. My science teacher from junior year in high school. I have to admit that. So I don’t understand any of this, what I’m about to say, to be honest with you.
People that know me figure that’s how I talk all the time. But the folks at CURE and the research or whatever you call that board, that figures out where the stuff should go, help me every year. In the last two years, we’ve given a combination of $350,000 to Dr. Carvill’s lab down at Northwestern because my understanding from what they’ve shown me is they’re doing the stuff at the genetic level. We all know about how the gene splicing and gene therapy and all that other stuff, which sings to me as a dad that had a kid with Dravet syndrome. If we could have turned whatever button it is in the gene so that the sodium channels would work right.
I went down to that lab a couple of times, and the very smart and wonderful people tried to explain it to me, and I just stared at the screen going, “I put on concerts because [inaudible 00:29:45]. What value am I going to bring?”
Kelly Cervantes:
The work that Dr. Gemma Carvill and her team Dr. Jeff Calhoun are doing at Northwestern, it’s really remarkable. I’ve had the chance to visit that lab as well. And in fact, Gemma has been on this podcast. We’ve interviewed her about some of the work. So if anyone is looking for specific information, you can go back and hunt that podcast down. But no, it’s remarkable. And there’s still so much basic research on how the genetics work that we need to know so that we can even begin to think about future treatments and clinical trials.
And if we don’t fund this basic research, no one else is going to. And so we are just so incredibly grateful to you for organizing this for all of the artists who come out, for all of the people who attend. And what that has turned into is absolutely remarkable. You talk about the future, what are your future dreams for Joey’s Song and for epilepsy research?
Mike Gomoll:
So even though I’m convinced that I will live forever, the proof is probably that I won’t. So my shot at immortality is out the door. The largest goal is to create an endowment. So far everything we’ve raised goes right into research. I had to do that, right? That was like a, I don’t know, primal something or other. Well, now it’s time to start thinking strategically. We’re big enough where we can do that. So hopefully to create an endowment that can in perpetuity spin off money so we can write these grants. That doesn’t mean I want to stop the shows, right? The idea is to create, and that’s why we’ve rebranded it this year.
We haven’t even got into the marketing. We’re calling it the Freezing Man Festival. A takeoff on Burning Man, right? You’re coming to Madison so [inaudible 00:31:47] because the idea is to make it more than just a concert. We’ve got these several concerts, we haven’t announced yet. We’ve got a little comedy thing we’re going to do. I know this guy that used to be on Broadway. There’s other things we might try to figure out with that to make it a week long event destination kind of thing in the mold of South by Southwest by or some of these festivals to continue doing that. And we continue to grow in the… First of all, every artist we’ve ever had is awesome, but let’s be honest, names matter too.
People buy tickets to see the names that they know. And the reason we’ve grown is nothing on my part. It’s these artists that come and they say, “Oh, you should call my friend so-and-so.” And I go, “You can hook me up with your…” I mean, these really famous people. And so the idea is to continue to grow that, and maybe Joey’s Song grows into some other cities because maybe we don’t just have people come to Madison in January. Maybe since there’s a whole core of artists in Los Angeles or Nashville or New York or Austin, we start to have that where instead of having to fly into Madison, they just throw their guitar in the back of their Prius and head down to the Avalon.
So the idea is to keep going until the marketplace tells us to stop. That’s the long-term goal, because no matter how much we raise, it’s never going to be enough. They’re never going to be able to say, “Yeah, I think we’re good on this for a while.” So let’s keep doing it. We’ve stumbled upon a formula that really works, that really resonates with both the audience and the performers. So let’s play this out.
Kelly Cervantes:
I love it. And what are your hopes for epilepsy research in the future?
Mike Gomoll:
That’s the easiest question anybody has ever asked me. Stop the seizures. People don’t understand what it’s like if you’re not in the community to live with. The sword of Damocles hanging over your head 24/7. If you’re those one in three that isn’t able to control your seizures with medication or diet or surgery, you never know. I started this podcast with you talking about Joe’s immaculate timing on when he would have his seizures. You don’t understand. It’s a constant pressure on the family, on the person, on the community, 24/7, 24/7.
So it is first and foremost, it’s stopping the seizures, then it’s figuring out how to cure, whatever that means, the anomalies that are causing them as well. And that gets into that genetic stuff and all that deep stuff. But the first thing is taking that 24/7 threat of seizures away from people, and then you can start focusing on the root causes of it. But that’s an easy one for me to answer.
Kelly Cervantes:
Mike, you are amazing. I am a firm believer that things don’t happen for a reason, but that we can make reason out of the things that happen. And Joey’s Song is an amazing thing to create as a legacy to Joey, I know that none of it will ever be worth it, but it is a beautiful thing that you’re doing, and we are so incredibly appreciative to you and to your family, and hold Joey in our hearts forever and always. Mike, Thank you so much.
Mike Gomoll:
Well, Kelly, you and Miguel, as I said, belong to a club that nobody should belong to, so we know that. And you deserve equal praise because you and your husband have poured your heart in the same way that we have. The phrase I use with people, somebody today is getting a really crappy diagnosis, and I want them to know that there’s some people out there that are trying to figure that out. And if we can do that again, nothing will bring your ladybug back and nothing will bring Joey back. But we can stop other people from joining this club that you and I would so desperately like to not be members of.
Kelly Cervantes:
Amen. Thank you so much.
Mike Gomoll:
Thanks, Kelly. See you in January.
Kelly Cervantes:
See you in January. Thank you, Mike, for sharing Joey’s story and your journey as an epilepsy advocate and fundraiser. And thank you for all that you’ve done and continue to do through Joey’s Song to support epilepsy research. As Mike noted, only research will lead us to a better understanding of epilepsy, improved therapies, and ultimately cures. From our founding in 1998, CURE Epilepsy has always been focused on research. Our mission is to fund breakthrough research that will transform the lives of people with epilepsy as we lead the search for a cure. If you would like to help us achieve our goal of a world without epilepsy, please visit cureepilepsy.org/donate. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.