Dec. 15, 2020

Moms and Meningitis

Moms and Meningitis

National Meningitis Association President Leslie Maier joins John and Erin to discuss the organization and how she channeled her grief into advocacy and action after she lost her son to meningitis. Leslie shares Chris’ story, explains how she first got i...


National Meningitis Association President Leslie Maier joins John and Erin to discuss the organization and how she channeled her grief into advocacy and action after she lost her son to meningitis. Leslie shares Chris’ story, explains how she first got involved with NMA and talks about the types of activities the organization does around vaccine advocacy. She also tells us about the work she did with the Arizona health commissioner to make her state the first in the country to mandate the vaccine that could have potentially saved her son’s life.

For more information visit: nmaus.org

 

Transcript
John:
Let's talk a little bit about the National Meningitis Association, Leslie. You're the president. Give me some information about what that, what the organization does.
 
Leslie Maier:
The National Meningitis Association, and we call it NMA, a is an organization that was founded in 2002 by a handful of parents whose kids either died from meningococcal meningitis, or else they survived, but they had some severe amputations. And so the mission of the National Meningitis Association is to increase awareness about the disease and the symptoms, and then about the vaccination that can best protect kids from getting it because meningococcal meningitis is, can be so deadly so fast, or it can just really change lives in less than 24 hours. As you know, John, it is a really dangerous disease. So these parents started the NMA to prevent what happened to them from happening to anyone else. And that continues to be our mission NMA is, is a group of people from across the country. We have advocates in almost every state. We have over 160 advocates, and they've all been affected either by losing children or by surviving. And they want to make sure that other families know about this disease because it's rare, but it can be deadly so quickly. And then they want to educate others about the, one of the best ways to prevent it is the vaccination. And so that's what NMA works on is awareness of the disease, the symptoms, and then the, the vaccine, the importance of, of knowing about the vaccine. So that, so that you don't end up losing your child to something that they wouldn't necessarily have to die from or so that you wouldn't end up having, having someone you love just have their life changed.
 
John:
How long have you been involved with the NMA?
 
Leslie Maier:
Been involved with NMA since 2005, when my son died less than 24 hours after he complained of a headache. And so I have been involved since then. In 2018, I became president when our previous president passed away. So I had retired from teaching and thought, Oh, I think I'll just kind of enjoy life. And then she passed away. And so I became president and, and I've started it's it's a labor of love, I would say.
 
John:
What is your path through the NMA? What did, what did you start doing originally?
 
Leslie Maier:
With NMA, what happened was when my son died, he was 17 and a senior in high school. And I didn't know anything about meningitis. I, I mean, and I didn't really even think about vaccines, how important they were. I just had my kids vaccinated because the doctor recommended it. What ended up happening was my son was a senior in high school and he was, he loved sports. He was a great athlete. He played baseball and swam and played lacrosse, volleyball, but he was really good at soccer. And so his senior year, he ended up telling me the very beginning of his senior year. He said, Oh, mom, I think we're going to have a great soccer season this year. I think we're going to win the state championship. I was like, Oh, I'm sure that you will not. I hope that he would have a good year in soccer, but I hoped more than that he would have a good year academically, but his team actually made it to the state championship game. And in February he scored the winning goal for his high school soccer team to win the Arizona state championship. And we are all just on top of the world, all the players all are the parents. We just were shocked because we were the underdog going into that game. And it just seemed like I was so happy for Chris. My son's name was Chris and I'm so happy for him and his teammates that I just thought the rest of their school year, they had about three more months. School would be just great. And what a great way to go out and little did we know that two, two weeks later everything was going to come crashing down on us. So what happened was my son, Chris, ended up going to school on March 1st. And he had a he complained that he had a headache. His friends all told me that and he went to have his state championship pictures taken. And when I went to pick him up, I saw him just, they were all the kids were just having a great time. They were sharing water out of their water bottles like kids do and telling their coach he couldn't boss them around anymore. And they're just celebrating. And Chris told me that he had had a headache. He took some Tylenol from a friend's mom. And, and then he and I had a really good talk on our home where he told me that he was really going to start settling down. And he he said, you know, high school has been the best years of my life, but I realized I need to settle down. He even promised he would go to church with me more. And he started talking about looking forward to going to the University of Arizona where he'd been accepted. And he was hoping to go into business. And he actually wanted to go into the record producing business with his friend, Sam, but he said he really actually especially wanted to, to get married at some point and have kids. He thought he would be a good dad. And I mean, he just had his whole future ahead of him, his looking forward to how his future was. And the one thing he was trying to do was convince me he should get to live in a, in an apartment with his friends. And I was trying to convince him he needed to stay home and keep his grades up for one semester anyway, but we got home and he seemed like he was feeling okay. He had dinner. And then just before he left he was going to go practice with the University of Arizona club soccer coach. Chris told me that he, his head felt kind of weird, but he felt like he could go play soccer. So he went to practice and the coach actually ended up sending him home early. And cause he could tell that Chris was getting sicker. And so Chris ended up taking a bath. He couldn't get warm. He had a fever, he had a headache. I asked him if he wanted to go to the emergency room or to the ER. And he said no, that he just wanted to go to sleep. And I knew he was really sick because you wouldn't take any of his phone calls. But I never knew how I, I thought he had the flu. I, and I also thought that if he was not feeling well the next day he should go to the doctor. And I, I didn't ever know that there was a disease out there that could take a healthy young person in less than 24 hours. And so that night Chris got up a few times, took bath a few more times. He couldn't get warm. He ended up I gave him some more Tylenol. He vomited a few times. And the next morning I left early to go to my, to teach the kindergartners. And that I had in my class. And, but I knew that Chris's dad was home and he would be there if they needed to go to the doctor, but I really thought it was the flu. So I just thought he would feel better after he'd had some sleep. And so it turns out Chris got up that morning. He walked around, had some water, didn't want to eat anything, took another bath. And then he actually did agree to go to the doctor. So when his dad went to check on him to see if he was ready, he found Chris laying on his bed and he asked him why he wasn't ready. And Chris said, dad, I can't feel my feet. And those were his last words. So he became unconscious and the paramedics were called and they got to our house in less than two minutes. I got a call that from Chris's dad that they were rushing him to the hospital, which I was just in shock because I had left at 7:00 and it was 9:30. And suddenly my son's being rushed to the ER. I couldn't even fathom what was going on. And when I got to the ER the paramedics were waiting out in the parking lot and asked him what was going on. And they said, well, we don't really know. So once we got into the, I got into the emergency room, I found Chris being intubated. They were trying to resuscitate him. And we were trying to get family members from Phoenix to the hospital. We were trying to find our daughter who was at the University of Arizona. It was just, it was just an unbelievable. It felt like I was living, I was in a dream or something, a bad dream. And our pastor got there and we were saying prayers for Chris to get better, telling him to fight, to stay with us. And it turned out that originally they thought he had been taking drugs because he was a 17 year old boy who came into the ER unconscious. And we insured them that wasn't the case. And so then they started looking for something else and they had a cardiologist in there checking to see if perhaps if he had something wrong with his heart and which I've heard of kids getting this heart condition where they some athletes, I actually knew someone who lost their, their son to, to that. He came off the soccer field. So I, I thought, okay. And it turns out that two and a half hours after Chris went into the emergency room, they had done this. They got the results of a spinal tap, which showed that he had meningococcal meningitis. And so Chris started to code again and they continued trying to work on him and revive him. And finally a nurse turned to us and said, you know he's not gonna make it. Though they'll keep trying, but he's not gonna be at all okay. He hasn't had any brain, any oxygen to his brain for hours. And I could see his ears were turning purple and his fingers were purple. And so we had to let our son go. We realized that that it was time to say goodbye to him. And that was the hardest thing we could ever have to do. And that became, that's how I got to find out about meningitis and the National Meningitis Association through the loss of my son to meningococcal meningitis.
 
John:
There's a lot of things about that story or that are similar to mine too. The speed at which things happen is, is incredible. And the first time I had ever heard of meningitis was when somebody told me that I had meningitis, you know, so.
 
Leslie Maier:
Yeah. And that, I'm so glad that you survived though, John. I mean, I think that's just such a wonderful blessing.
 
John:
They also, when I went to the ER thought originally that I was overdosing on drugs as well. So I was, I was 19 when it happened and otherwise I didn't have any other symptoms. And the overdose was also thought for me too.
 
Leslie Maier:
And that's, as a parent, that's a really hard thing when, you know, that's not what it is. And even a neighbor who lived next door, she said, the paramedics were asking her, did Chris do drugs? And it was it's kind of like, I'm glad we, we found out what, what our son had before he passed away. And, but it must have been hard for your parents to hear that they thought it was drugs maybe and all that.
 
John:
Well, my parents weren't there originally from, for my entry, I was in, I was about five hours away from them. I was in college and the school is about five hours away from where my parents were. So there's, it's a pretty miraculous story that occurs about how my parents were notified, but once they were notified, they were told that by the time you get here, it was about an hour flight. By the time you get here, there's, there's a pretty good chance he won't be alive. So, you know, get here as soon as you can. And I didn't have any of the telltale signs, like the purple spotting that is often identified with meningitis. Mine was still somewhat ambiguous as far as what was wrong with me initially. But once they did the lumbar puncture or spinal tap, it was confirmed. And so that's when all the treatment began and something else that strikes me odd about my case and your son's case too, is that it is a highly contagious disease, but nobody else was affected besides, besides me. And I think that's the case for Chris too, is that right?
 
Leslie Maier:
It is. I, I do think one of the things that protected his friends was, it was kind of, we had kind of a I always think of it as kind of maybe a God thing. But the ER doctor was the father of one of the soccer players from Chris's high school soccer team. And so he actually call, so the doctor called his son Dove and said, Hey, Chris is in here. And so he act then Dove was able to alert the coaches and all the other players and and his, and so the doctor actually must've told the, the coaches and everyone that they needed to have a get together. And so that all the players could be given Cipro. So a few hours after Chris had passed away, there was a big meeting at a local park where all of the, the players who were on the, who had been playing the, with Chris on the, with the UVA soccer coach and who were also on his club on his high school team, they all got together at a park along with all of his high school friends that he'd been in close contact with, and many of their parents as well. So they all were given Cipro. And there were so many prescriptions for Cipro that the doctor ran out of prescription papers actually. But I do think that helped save anyone else from getting sick. And and I'm thankful for that. And I know that his friends, they were just so shocked that when they heard that Chris had just suddenly died. Cause he'd been at school the day before with them and hanging out they were just so shocked. They called their parents and, and they were just devastated by losing such a close friend, but then they were also so fearful that they might get sick and die suddenly too. So it was really a terrible thing for not just our family, but for the community of, in Tucson, with Chris' high school friends and soccer players.
 
John:
Something else that strikes me is similar to mine. My incident occurred in February, so it's kind of in the flu season. And so many of the symptoms look like the flu. And of course it sounds like you didn't know much about meningitis much either. So it's, it's so difficult to, without, without purple spotting or without a spinal tap, it's really difficult for people to understand something that may look very, very mild. It could actually be very fatal very quickly. Right.
 
Erin:
Why was the decision for you, John, and for Chris, Leslie, to have the lumbar puncture? Was, I mean, were they, did somebody suggest that it would, they thought it was meningitis or
 
Leslie Maier:
In our case it was the paramedic who responded. And this was another weird thing that happened was that he had been in the wedding. He was a groomsman in one of my friends that I taught with and her husband was a firefighter and this, this paramedic was one of her husband's best friends. And so that paramedic responded, I didn't know him or anything, but he said that he just had a feeling, it might be meningitis. None of the nurses or the doctors at the hospital had mentioned meningitis, but when he took Chris in there, he demanded they do a lumber puncture, because he felt like if it was meningitis, the firefighters would be going to see other people. And so they wanted to make sure he wanted to make sure that if, if it was meningitis, then that they wouldn't have possibly contracted it either.
 
Erin:
Right. And you had said that Chris said that his, his head felt weird. Was that, was he describing it differently than a normal headache? Do you remember? Or
 
Leslie Maier:
He said his headache, he complained first of a headache, but that was like a normal headache. And he'd had a headache occasionally this time before he went to practice, it was, I'll never forget he was standing there and he put his hand above his head and circled it around a few times. And he said, yeah, my head just feels kind of weird. And at that point he wasn't really complaining of a headache. And so, but I still thought when he came home that he had, he had the flu, I mean, just like you, John, it was like flu season. We'd had really bad cases of flu in Tucson at that time. And so I just thought he had the flu and I didn't even know people died from the flu. So that was, I really was never thought he was going to die from the day before when he first complained. I was, it was just a shock.
 
Erin:
John you asked me about your, I've been thinking about your parents, you said at the hospital. The only thing that I can really remember is when they got to the hospital and the doctor was talking to them and they, the doctor had said that you should probably go in and say your goodbyes, that he's not gonna make it. And they requested a different doctor. They said, we want somebody else.
 
John:
Yeah, that was for me, the, the story is a little further ahead than Chris's story. Chris was pretty much in the ER, I had made it out of the ER and into ICU. And that's where the doctor who was in charge of me told my parents that just basically it was, it was kind of doom and gloom and didn't have a good forecast. And in fact had basically said that there's a very small percentage chance that this is going to, that he's going to get out of this. And if he does, he's going to have some severe disabilities and maybe some amputations, or maybe even be in a vegetative state. And they were preparing my parents for all that. And it seemed like I've described it before. I spoke with Blake Schuchardt. I think you know Blake, and that's kind of one of the things about our story that's similar, where he was, his parents were told a similar form, given a similar forecast about what to expect and with my parents if this guy is saying that this is it, then, then we need another opinion. I wanted to talk to somebody else. I want to, generally my family are pretty optimistic people. Erin, would you think so?
 
Erin:
The most optimistic people that I've ever met.
 
John:
So kind of the idea was then, then let's get another opinion. Let's get a second opinion and find out something else and find somebody that is really interested in making a difference here and, and seeing the sunny side of things and, and being optimistic. So, yeah, in essence, my parents fired the doctor and were given another ICU doctor and really for me and my story, that's kind of where it took a turn for the better and things really started moving in the right direction. So,
 
Leslie Maier:
Oh, that's a good thing. I think of Chris had gotten out of the ER, if it hadn't been just so crazy for the two and half hours he was in there, they really I don't think they thought meningitis. I truly don't. I think that, I don't know if they'd ever seen a meningitis case there, but because it is a rare disease, I think they were just so busy trying to get him so that he wouldn't code Yeah. That's what they said. They wanted to stabilize him and get him. They were actually trying to get him to the cardiac ward, but and he didn't, I don't know if he had the rash or not, because I didn't see his, all I saw were his fingers turning purple and his ears turning purple. But I think now they probably do think meningitis much more often. At least the people that worked on him, will never forget that.
 
John:
And the why the lumbar puncture was done with me. I can't answer that without talking to the people that were there at the time, but I would imagine it was one of the, one of the protocols. It might've been pretty low on the list or maybe it was high on the list. I don't know. But it, after they had done that, that's when they were able to identify what it was with me. So time is of the essence, obviously for everything, including this and you know, it just it's so fast. It is, I was also up and around within 24 hours of me being in the hospital and acting according to my roommates normal. So, wow. It's so it happens so fast. It's so hard to detect the, you know, which is why the NMA is such a great organization for what it's doing and what, what you guys are educating people about, just awareness even about what it is with things to look for. And then even, even if the things to look for aren't present, don't, don't forget it don't rule meningitis out because it's certainly a possibility.
 
Leslie Maier:
Right. And, and that is why NMA was founded because the parents who started it, they just like us, they didn't know. And so they wanted other people to know about this rare disease that could just take kids, healthy kids before you knew it.
 
John:
You started with the NMA and I think you said 2005 or six.
 
Leslie Maier:
Yeah. I started in 2005. What happened was Chris, he passed away on March 2nd. And then a few weeks later I found out that there was a vaccine that had just been approved by the FDA. And I was at a meeting and with some D the help with our County health department people, and there were doctors there and they I heard doctors saying well, they weren't going to give that vaccine. And when I heard that Chris had just died like few weeks before that I had seen the devastation caused in so many of his friends lives and in our family's life. And I just was like, well, if the doctors don't tell us about this vaccine, you know, as a parent who didn't know anything that might save my son's life. So I found out about the National Meningitis Association at that point. And the president Lynn Bozof called me. And she called me, I was taking my daughter, by then I was thinking everything was meningitis. So I was taking my daughter in urgent care to make sure she didn't have meningitis and so anyway, but I remember I got that call and I asked what I could do. So then other people that I cared about wouldn't, wouldn't lose their kids. And so Lynn told me about NMA and she she said I could, what would be helpful in Arizona anyway, was to try and, and see if we could get an education mandate or a vaccination mandate, or can just spread awareness of the disease. And so that's how I got involved with NMA. And I've been involved ever since 2005. And there's still a lot of people that don't know about the symptoms of it. They don't know how they don't know to even ask their doctors about the vaccines, but there are fewer cases now, and I'm thankful for that. And I think part of that has do a lot of that might be due to the, the vaccines being out there and more doctors knowing about them and, and talking to their patients about it
 
John:
And organizations like the NMA, which helped spread awareness. And, you know, I think even looking at at our child's what was the, we have a vaccine list or something, don't we Erin?
 
Erin:
From the pediatrician?
 
John:
No, I thought we had one from the school district.
 
Erin:
Oh yeah. We get a weekly a newsletter sent out and often there's information in there about meningitis and getting vaccines and trials that they're doing. And I think we had one. Yeah. So they're getting the information out there.
 
Leslie Maier:
That's really, that's really good. And that way parents can know, and then they can talk to their doctors about it. And that, that is what NMA we work on talking to school nurses, talking to health departments, talking with healthcare providers so that they'll know, you know, they'll hear our stories and realize, Oh, I better, you know, think meningitis. I better remember to talk to parents about the vaccines. And
 
Erin:
Maybe that's what we were talking about, John. Do adults get the vaccine? Because you hear about kids getting it.
 
Leslie Maier:
Adults could ask for it, but they don't, it's the recommended vaccine schedule is for 11 and 12 year olds to get the first dose of the men. It's called a quadrivalent vaccine that protects against four strains of meningitis, ACWY. There, there four strains for meningococcal disease that, that 11, 12 vaccine will protect against. And then they need a second dose of that, a booster dose when they're 16 to keep their protection levels up for when they're getting more independent and that should get them through their most risky time. And then there's also another meningitis vaccine, men B, and sometimes they'll have, you'll see commercials for that one sometimes for college kids because they have that's the source of college outbreaks more often men B meningitis B. So kids also need to get to find out when they go in, they can ask their doctors had showed, tell me about men B, and that way parents can decide what do they want to do for their kids?
 
Leslie Maier:
One of the things about meningitis is because it can be deadly so quickly, then parents aren't, especially with their college kids very often. And that's where as a parent, I always think, gosh, if if I can protect my child, I can't be around them all the time. I'm not going to be around them, but at least if they get really sick and they've had the meningitis vaccine, they've gotten both doses of the men ACWY, and then later the men B, then I'd at least be able to rule that out and think, okay, it must be something else.
 
Erin:
So does this shot, do the shots, keep them from getting it or is it like the, so it's not like the flu shot. Like you still could get it, but it's not going to be as bad.
 
Leslie Maier:
It keeps you from getting it that's wow. Yeah. And, and no vaccine is a hundred percent effective, but it is very effective. And so it, it keeps them from getting it because it's can be often if kids go, sometimes when people go to the ER with it, doctors don't recommend it and they'll say, Oh, you know, I think you have the flu come back tomorrow. If you don't feel better. And then tomorrow might be too late. So that's another reason because the symptoms of meningitis like fever, headache sometimes nausea and vomiting, those are similar to the flu. So that's another reason that the, the, the vaccine's so important, because then you could, as a parent, if I heard my, if I heard that, like my daughter was there I would say, well, she's, she's had the meningitis vaccine, so then they wouldn't have to necessarily right. Look for meningitis. They could think of something else.
 
John:
One of the other things that you did as the board member or, or, or associated with the NMA, kind of in the earlier days, I think was you worked with the Arizona state legislature to get some, some laws passed regarding vaccines, did you not?
 
Leslie Maier:
I did. It was actually it was with our health department. I worked with, they were rewriting our vaccination laws in Arizona. And I remember I went to my kindergarten class and I looked at all my little kindergartners, their cute little faces. And, and of course I'd always think about, you know, what, how it could protect them. And, and I remember thinking, you know, I didn't want any of them to get sick with meningitis. And I knew they had had to have the chicken pox vaccine to come to school. So I thought, well, I think we should requirement meningitis, the meningitis vaccine. And so I went to our state health department and our assistant director, and I had a nice talk. I showed him a picture of Chris and I told him what had happened. And and he, I said that I wanted, I thought we should mandate the meningitis vaccine in Arizona because that way he had their families wouldn't lose their, their kids. Like I had lost Chris. And he said, you know, I think we'll try and do that. So Arizona was the first state to mandate it for 11 and 12 year olds. And at that time we thought that it would, the vaccine might last 10 years. But after that few years after that, we found out that there was a second dose, another a booster needed at age 16, but we were the first ones to, to mandate it. And and it's been really special for me to when I go through Arizona and I see kids out there and I just think, well, at least, you know, you guys are protected against meningitis because it just turns your life up side down so quickly. So we still haven't mandated the second dose, but at least they've gotten the first one
 
John:
Taking the first one. It should get parents thinking about it. And I would hope that the doctors that are providing that educate the parents about the need, the need for the second dose, and then any follow-up doses that would be needed.
 
Leslie Maier:
The hard thing with the second dose is that a lot of times parents don't realize that their kids need to go back when they're teenagers to, to see a doc to their pediatrician. Like I always my kids always had to go because they played sports. And so they had to have their sports physical, but some kids, if they're not playing sports, they don't have to go in for their physical. So some parents don't realize that just that 16 year olds need to get in there to see if if they're, you know, just to visit their healthcare provider, to see if they're needing any vaccinations. And also the healthcare provider can find out other things, maybe talk to them about other things going on in their lives about how to be healthy, talk to them about healthier lifestyle. And so that's what we're trying to do. We have, we actually have a campaign out right now called the 16 vaccine because a lot more kids have gotten the 11, 12 vaccine, and then their parents think they have gotten their meningitis vaccine and they don't realize that they need another dose at 16. So that's what NMA's been working on currently is making, trying to let moms know through social media that, Hey, there's another dose that your kids, if they're 16, or if you know, 16 year olds that they need to get in to see their healthcare provider and find out about it,
 
John:
Is it too late after the age of 12, 11 or 12 to get the first?
 
Leslie Maier:
No, if you, if kids have missed their first dose, 11, 12, they should still go into their health care provider and find out how they can get maybe caught up. And especially now, we're having a lot of kids across country who are missing out on, on visiting their healthcare providers because of COVID. And so what's happening is, kids aren't getting a lot of the vaccines that they would normally be getting because parents haven't been going in as regularly as they used to. So that's a big concern right now is that we have a lot of kids out there who aren't staying up to date with their vaccinations. So they might, they might end up getting a vaccine preventable disease just because they're not up to date. And so we're actually in all of our messaging, we try and encourage parents to get your kids into their health care provider and talk to them about any vaccines they might be missing. Because we, in these crazy times, we wanted to try and protect kids from the diseases that they're vaccines for. So that, you know, they saw that our kids can be, have healthy lives.
 
John:
Was the process getting through Arizona's health department, was that, was that real difficult or?
 
Leslie Maier:
You know, it wasn't real difficult, took a little while to get it going. I found out that they have, they get a lot of input from different parties. Like the school nurses. I realized they're a big part of getting mandates in place, or because they're the ones that have to check the school records and they need to have a way for the nurse. They need to have clear rules and the, and the nurses should have give feedback on, on mandates. Because they're the ones that are implementing them. So they had to, to work some things out with the school nurses. And then they had to have enough money. That was another issue. So I got my friends to email their legislators to pass the health department's budget because they needed to have some extra money in there for the under-insured kids. And and so then, and then I had to testify. I told my story and and usually when people hear how my story, then they realized, wait, they can relate because if they have kids of their own, they think, Oh my gosh, I didn't know anything about meningitis. That's probably the same with you, John, when you tell them, they're like, what? Yeah. And so, because it's rare. So they had to, so, so my story helped them realize, Hey, as a parent, you don't want to have this happen to you or grandparent or, and so it took about, I think it took almost two years to get it to, to be required. I think I started maybe in 2006, I think maybe, or, and it 2008 was when they first required it.
 
John:
Are you aware of any other States that also have a mandate for meningitis?
 
Leslie Maier:
There are a lot of States. Now when Chris died, there were maybe 33, I think, I don't know if they had a mandate for meningitis vaccination or at least education, but now there are a lot more because it's recommended by the CDC that kids get it at 11 and 12. And then it's also recommended at 16, but parents tend to take their kids in at 11 and 12. And doctors are pretty on top of the 11 and 12 vaccines. It's the 16 year olds that aren't going into their doctors as regularly. And so they don't necessarily find out about the second dose and then they don't find out about men B and other vaccinations that they might want to get at that time.
 
John:
Leslie, so that's a lot of great information. If somebody wants to know more about your story, Leslie or others, where's the best place to get more details about the NMA?
 
Leslie Maier:
The NMA has a website and the website address is www.nmaus.org. If you want to find out more you can just go check it out. We have meningitis information, we have vaccine information. You can find out which states, I think that we have information about states that have had outbreaks. We have our advocates stories are accessible on line, and we also have some downloadable materials showing a timeline for in 24 hours. What happens when you get meningitis? So check that. I encourage you, check it out.
 
John:
Those advocates stories are really compelling. Those are really powerful, both from the survivors and the parents and people related to people that have had meningitis.
 
Leslie Maier:
Their stories really make you realize, gosh, this is a bad disease and we need to make sure we know about it. And I think, I think we have some, I've met some amazing people. Now I've met you too, John, so.
 
John:
Well, I don't know. I'm not sure about amazing, but we'll see. We'll see where we go from there. What about the website for the vaccine?
 
Leslie Maier:
For the second dose?
 
John:
Yes.
 
Leslie Maier:
The, that we also have a website, www.the16vaccine.org. And there's some more stories of people who have either survived or lost kids to meningitis. Those are tend to be the teenagers. You can also follow NMA on Facebook or Instagram.
 
John:
Yep. I've seen you guys there on Instagram, Facebook, Twitter, most of the social media places you guys are there too. So once again, Leslie, thanks for everything you're doing. Thanks for sharing your story with us and keep on fighting the good fight..
 
Leslie Maier:
Thanks John. Thanks Erin. I really appreciate your help in spreading the word.

Leslie Maier

President at National Meningitis Association

Leslie Maier's athletic, healthy son, Chris, was a senior in high school and a star soccer player when meningococcal disease tragically took his life. Just days before his death, Chris was “healthy as could be,” and scored the winning goal at the Arizona state high school soccer championship. On March 1, 2005, Chris had to leave soccer practice early because he was having a difficult time getting warm. He took a warm bath and Leslie gave him medication for his headache and fever. That night, Chris’s condition worsened and he started vomiting. The next day, he couldn’t feel his legs, and Leslie’s husband called the paramedics. As the paramedics rushed him to the ER, Chris lapsed into a coma. The disease took Chris’ life in less than 24 hours. His parents had never heard of meningococcal disease, and they didn’t know it was potentially vaccine-preventable.