Join host Matt Starnes with special guest Betsy Boone of #Kennedy Strong. Betsy explains the origin of #KennedyStrong and giving back to the Charlotte, NC Down syndrome community.
KennedyStrong Foundation began with a realization followed by an idea. One day Betsy and her husband, Brendon were talking about their kids heading off to college and leaving home. As they thought about it they realized that as many options as 3 of their kids have, there weren’t nearly as many options for their littlest one because she has intellectual and developmental disabilities (IDD). Betsy and her family wanted to make a difference and that’s where the idea comes in.
Betsy asked, "Why not us? Why don’t we work to create more options for individuals with IDD? And while we’re at it, why don’t we also show support for families who are in the hospital for extended stays taking care of their loved ones. After all, we had been there done that ourselves when Kennedy was hospitalized for 48 days following her 2nd open heart surgery."
That led Betsy and family to create the KennedyStrong Foundation. They named it KennedyStrong- to get through all that Kennedy has gone through so far you have to have strength and they want others to have the support they need to be strong as well.
Betsy launched KennedyStrong Foundation with two programs to get things started: 21andUP and IHEARTKENNEDY
Listen and learn as Betsy and Matt discuss:
- The difference between 21andUP and IHEARTKENNEDY
- Upcoming events and activities for #KENNEDYSTRONG
- The many ways you can get involved or contribute
Connect with Betsy and team here!
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Here's the full transcript of the episode:
Matt Starnes: Matt Starnes, host of the marketing monster mash up podcast and special guest on Episode Twenty Eight is Betsy Boone of KennedyStrong. Learn all about this Down syndrome foundation and what activities they have coming up, what events, how you can get involved, and just learn something. This was a very informative chat and I hope you enjoy it and make sure to share it and also check out our Facebook page at Marketing Monster Mashup on Facebook. Tell us what you think, what kind of guests you would like to see in the future. Would love to hear from you.
Announcer: Marketing Monster Mashup the official podcast of Leading Results
Matt Starnes: Betsy. Thanks for joining me. I really appreciate it. Betsy Boone: Yeah, thanks for having me. Whoa. So you just have so much going on and we'll make sure we get to the events. But what really was the, um, the seed that made you go, I really need to start KennedyStrong? I think people need to hear the story.
Betsy Boone: It, um, it, it's actually kind of a slow progression when we found out that we were going to expand our family. We had a, um, an eight year old and nine year old. Then we found out we were going to have twins. Wow. And that was unexpected. And then, uh, we found out very early on within, uh, within the first 14 weeks that one of the twins, baby b would have Down syndrome and a severe congenital heart defect. Okay. So the heart defect, we knew we were going to have surgery. Well that's going to change the trajectory and that's going to make you aware of things. And then the Down syndrome was actually a little more unknown and a little scarier, believe it or not. So at that point, Brendan, my husband started looking at how this was going to change our retirement. Matt: Oh sure.
Betsy Boone: And I, I hadn't thought about that. I was focused on growing the babies and he's like, well, you know, if she has down syndrome, she's probably gonna live with us forever. And I said, I hadn't thought of that. And he's like, well, I've been doing some research and that does tend to be what happens now. We're seeing more and more individuals with down syndrome that are leaving the nest and the, and they're starting to live somewhat independently and uh, so a smaller percentage and there are some communities out there for, um, for individuals to, to grow and live in. So that's while they were still in the womb. So we, we were just kind of thinking we've got, we know we're going to have three kids when they get out of school, they're going to be out on their own and they should be able to go out on their own and do whatever they need to do.
Betsy Boone: That's our job to train them up that way, then let them go. But with Kennedy, we, may have to to make some, some additional concessions. Well, so we had Kennedy, we had her first surgery at eight weeks. We had our second surgery. I'm actually five days before her first birthday and then came home for a birthday and then she went back in and stayed in the hospital. Was there for 48 days. Yeah. So she had some complications. That's a long time. And we made it through that, she came home, she came home on oxygen and medication, but she came home and was doing well. That was all in 2016. And in 2017 we realized we don't have heart surgery. This is amazing. So for the first time in two years, we don't have to think about taking our kid to the hospital to have their chest opened up.
Betsy Boone: That's a normal headspace. So to not have that, we said, well, while we're in a position where we could, we could do something we could give back now. So the past two years we've been, um, we've been benefiting from so many other support and now we, we can help others. So we'd signed up for the Down Syndrome Association of Greater Charlotte's Three, Two, One Dash. So Down syndrome occurs when you have three copies of the 21st chromosome. So three, two, one, those are big numbers. Three 2 1. So there we are three, two, one, dash. And I'm just, after posting on Facebook, we had a team of 30 and we were the second largest fundraiser. And we were like, we didn't even try. Matt: Wow. Betsy: And Brendan and I looked at ourselves and said, you know, Kennedy's touched a lot of lives and um, and we have a responsibility, so what could we do with this?
Betsy Boone: What should we do this do with this? And um, and that's, that's kind of what led to things. So we said, let's put something together, we know we're going to plan for her future and we would love to have a community within the Greater Charlotte area for individuals with Down syndrome to live and work and play. There isn't one today. And uh, at that point she was to sort of like, we've got some runway, but something that big, you're going to need to start a little early in order for it to be in place. So we, gathered a couple folks together who were interested in what we were doing and we submitted the paperwork to become a nonprofit. So submitted it with the state. And along that same path that at that time we said, well, we want to do our community so we take care of her.
Betsy Boone: She's older because services start to decline after the age of 14, um, and they really, there's a sharp decline after the age of 22 when they get out of school. So we call, we decided to call that program 21 and up. So it kind of plays on both things, the 21st chromosome and over the age of 21. And then the other thing we wanted to do was we really had a heart for those that are in the hospital and realized that we were lucky enough to have so many friends and family come to our aid. But there are many more people out there that don't have that in that. Charlotte's a great region. Levine Children's Hospitals, phenomenal ranked in the nation. It was 30 minute drive for us. Well, there are folks coming in from Asheville and Columbia and the greater Piedmont. So we created another program, we call it 21 hearts.
Betsy Boone: And uh, and um, yeah, so I think that was a long winded answer to your question. The 21 hearts as to help folks who might be coming from further away to make it easier to get treatment or so. No. So what? Twenty one hearts is when you're. When you're in the hospital. We were most familiar with the sixth floor. That's where you go after you have surgery. It's pediatric intensive care unit and on that floor you've got a one to one patient to nurse ratio. Yeah. So as a parent you didn't mind leaving for a few minutes to go get a cup of coffee or go to breakfast or even go sleep because there's a nurse there. Will you graduate from the sixth floor to the eighth floor called the Progressive Unit and on that floor your nurse to patient ratio is re is roughly one to three and those nurses are phenomenal and they're there to take care of the medical needs. Well, when you've got a one to three ratio, what the hospital wants you to do then is start start performing more of the care for your child because they want you to get ready to do that. When you go home on the sixth floor, the nurse is doing just about everything because you're hooked up on more machines and you could shake a stick at the transition.
Betsy Boone: What can I do this in the home setting or can I, can't I do this, I need to do this. And you're more on your own. Well, and at that point your child's not in intensive care. So on the path to recovery and at that stage a lot of parents have to go back to work and um, and the best gift you can give somebody and that's in the hospitals, the gift of time. So what we do, we do two things there. Number one, we hand out care packages. So when you graduate from the sixth floor to the eighth floor, you get, we call them love bundles and their hand decorated notes, hand decorated bags with handwritten notes inside and they include reusable water bottles and fuzzy socks and nice toiletries because if you're there for an extended time, the toiletries in the hospital aren't the greatest.
Betsy Boone: Um, and then some, some games. So something for the patient and the and the, the family members to pass the time and then, and we like to include gift cards in. So it's nice when you're there, most people are asking you for things and um, and we're, we're just giving something to say, Hey, we care about you, we want you to feel supported. And then we provide volunteers on Tuesdays and Thursday nights and that's how we give time. And it allows parents that aren't able to be with their kids all the time to know that their child's being cared for and the nurses love it because it's an extension of them. We walk in and they'll say, hey, I've got a baby in room 15, can you come hold him? Or I've got a child over here, can you go play video games? Um, so we are there first and foremost for the patients whose family members aren't there. Um, and then second, for the patients whose family members are there, 24 by seven and they need a break. And then those parents know that somebody with their child so they can go and get a cup of coffee. Take a walk. Yeah, because if anything happens, we know how to hit a nurse call button and we know how to call them on a cell phone, but it just gives them the ability to, uh, to get out and release a little bit. So that's about 21. Hearts is all about.
Matt Starnes: So you got just a lot of events coming up so we're really excited. I'm glad. Glad you could. Could come on. So I guess the most, the closest one we have coming up is on the twelfth of October. This is 2018 if you're listening to this in the far distant future. But uh, so tell us about the pre party.
Betsy Boone: party. I firmly believe in partnering with organizations and not duplicating efforts. So I've mentioned the Down Syndrome Association of Greater Charlotte and that's a phenomenal organization. They have something called a first call program where when you get the diagnosis they'll pair you up with a family that's similar to yours to kind of show you the ropes. They do educational symposiums both for administrators and teachers and parents and they, um, they put on summer camps, day camps, overnight camps, and through the fundraising that the down syndrome association as it offsets the costs for these things. So we like to give back to the Down Syndrome Association and October 20th is their big buddy walk. Yeah. So we have a team, Kennedy strong, um, that's walking in the buddy walk and um, and the money we raise for the buddy walk goes straight to the Down syndrome association.
Betsy Boone: So before the buddy walk we have our own party and that is the KennedyStrong foundations fundraiser. And that started last year we had a team of roughly 50. We had tee shirts and we said, oh my goodness, how are we going to get tee shirts handed out to everybody? Well, why don't we have our own packet pickup and we'll do it at 26 acres brewery. Let's make it a family friendly event. 26 Acres is great about partnering with us and letting us use their space. And we wanted to make it family friendly. So we have kid's crafts and face painting entertainment, they're great brewery and then food trucks. So we're kind of covering all the bases. If you've registered to be a part of our team, you can come pick up your t shirt. Um, if you're not registered you can register then or you can just come out and have a beverage, grab some food, hang out with your friends.
Betsy Boone: And we sell 50 yard dash raffle tickets. There's a silent auction this year and um, donations and we sell t shirts. Yeah. So six to eight on Friday night. Um, we're looking forward to that. And then on the 20th is the buddy walk. That's where we celebrate those with Down syndrome. That's at Jerry Richardson Stadium. And we'd go on a one mile walk. It's like a saunter so anybody can do this and uh, there'll be signs along the way with Kennedy's picture on it and a couple things about her. And you'll see I think 37 other kids that have, that have hit the fundraising level to have those signs. There are 142 teams. They expect about 1500 people and that is, that starts at 10. The walk starts at 10:30 and then at 11, the Dj Dance Party starts and there are bounce houses and face painting and selfie booths and drum lines. I mean, it, it is, it's awesome. Yeah.
Betsy Boone: Well, you know, this is good. This is great. It's fantastic. Uh, last year, Davidson Day school chose Kennedy strong foundation. Is there community service partner of the year? Yes. The Davidson Day schools have phenomenal school. My two older kids go there and I'm. One of their key initiatives is character development. So they appreciate what their students getting involved with us can do to help the students develop character, to be on the lookout for those that are a little different. And we do what we call a packing party. So we talked about the love bundles. How do you think these things get made?
Betsy Boone: And the magic is when people come together and uh, and we have stations, so we throw some markers and crayons and colored pencils out there, give them some examples and people go to town and you'd be amazed at what a second grader can do to what a 60 year old can do with these bags. Um, so they, they decorate the bags and then we write these personalized notes because that's important when you're in the hospital, you don't want to feel like you're getting something out of the end of a machine and then you go through an assembly line. So you're putting in the reusable water bottle and, and all these things. Um, so we call these packing parties and businesses have had them. So Avid Exchange did one of our first ones. Yeah. And Davidson Day School is doing one. The first time we did one of these love bundle drops, we call them, we made enough for the pediatric intensive care floor.
Betsy Boone: So that was 24 rooms and no 20 rooms. And then we did the eighth floor. So that was 20 rooms, so 44. And we also packed a love baskets. These are hospitality baskets. We want to show the nurses some love. Sure. So we include grab and go items for them in some nice handwritten notes. They are. And they also go in the hospitality room. Well, we've had such support and so many people asked to be a part of these things that, uh, that we said, you know what, let's go big. We, um, we have the opportunity to blanket the entire children's hospital. It's 234 rooms. Yeah, because we've got inventory. We hand out our love bundles weekly and the run rates between six and eight, we had a little extra and inventory. I've got to Statesville Christian school is doing a packing party and their third grade class.
Betsy Boone: And then Davidson day school wanted to do another bunch. And Bruce Air Filter, one of our, our platinum sponsors. They wanted to do when I said, well, you know, Gosh, we're so close. Why don't we open it up? And then so many kids. So at the hospital you've got to be 16 or older to participate in an event at the hospital. Well, our packing parties, you can be any age, so University City, United Methodist Church is going to let us use their gym November ninth and we'll have these stations set up so people can come and they can bring donations for the things that'll go in these, in these bags and there'll be a list out on the website and on the Facebook page what you can bring and then you can decorate to your heart's desire, pack a bag and on November twelfth Davidson Day School's Key Club is going to help us distribute these bags. So, um, so we have the opportunity to, to spread hope and joy to 234 families because so many people love what we're doing. And um, and wanted to chime in. Yeah.
Matt Starnes: That's just amazing. The growth is amazing, you got the word to spread and then people are like, yeah, this is a good thing. I want to be part of this.
Betsy Boone: Yes. What's really been neat is that there are a lot of kids in, in school and they've got to do service projects. So the parents are calling me saying, hey my, my kid picked Kennedy strong, can a, can they help you out? And it was like, yeah, absolutely. You can come to the party and help us with the tee shirt distribution or you can help us set up or tear down or do the love bundle packing party on the ninth. Um, you can take up within your classroom. I'd love for us to get to the point where we have at least 250 gift cards. The care packages are great if you're able to hand somebody $25 for gas or a restaurant or a cup of coffee. The results we got when we handed these out last December were amazing. I mean, there were, there were some folks in, don't get me wrong, when you're in the hospital, you could get the best news
Betsy Boone: But if you've got crappy news that morning, it doesn't matter what somebody is giving you and we're prepared. We understand that, you know, that in some cases we're going to hand over that bag and say, I hope you have a good day. And they're going to nod and we'll go onto the next room. Then there are other rooms were folks literally broke down into tears and said, nobody's ever given me anything. What, is this for? It's like, well, we just wanted you to know. So, um, so when there are that many generous people out there, we love to be able to, um, to capture that and to give folks the opportunity to give back because you do get a good feeling
Matt Starnes: I guess maybe not under the same circumstances, but sometimes when someone approaches you and they're excited because they're giving you something but something catastrophic has happened or maybe not the best news or some really horrible news. I think. Yeah, there's just in that moment you can't even acknowledge sometimes what you just did. You're on autopilot to an extent. So you might take something and be like, thank you instead of nothing really registers because you're trying to deal with that. So. But I think, I think on the, you know, afterwards, once a crisis, you know, you might look at that and that might be one of those things you go, oh wow. And that could be a pick me up when you're not there too. So hopefully people will think about that as well. But Oh my goodness. These are all great events. So if someone wants to help in any capacity, where's the best place to start? Is it the Facebook page, the website?
Betsy Boone: That's a really good question, Matt. So either way, if you want to interact with us, the Facebook page is probably best. Bear with us and that every member of my team, we're all working and we are all parents. So um, some of us jobs mostly. So if we're not the quickest, it's because this is not our full time job. It is our full time passion but not our full time jobs. So the Facebook is a great, great way to interact via the messaging component. And then just to see what's out there. And then on the website, you'll get a history, you get to see my beautiful family, um, you get to see the members of the team that have really come together and of course we've got events and there's a tab for it, I think it's either called support or donate and there you can go online and you can fill out a form to let us know where you want to volunteer. And you can also support us via Paypal. We are, um, we are a 501(c)(3) three approved organization. So we do have that right off. And um, yeah, those are probably the best places to go.
Matt Starnes: What's the website address? KennedyStrong.org? I thought I couldn't quite remember. I'm just thinking Dot Org. So I just wanted to make sure.
Betsy Boone: It's Kennedy Strong Foundation on the, uh, on Facebook. And she got that name when she was in the hospital. Like I said, we were there for several weeks and I had a coworker who had sent me notes and you know, how's it going? And it was, oh well, you know, we're going to be in here another two weeks or whatever. And it always sat, sign it. Hashtag Kennedy strong.
Matt Starnes: So I've got goosebumps. That's beautiful. So we were chatting a little bit beforehand before we started recording about this might be a lot of people's only exposure to Down syndrome, uh, but the TV show Born This Way, which, you know, you were telling me that this is kind of a, all of those folks are pretty much higher functioning folks with Down syndrome and I think that's something important to let people know that this is a wide range of ability within Down syndrome. Is that fair?
Betsy Boone: So Down Syndrome, you know, it, it occurs, you either have it or you don't. And then if you have it, what you're able to accomplish is largely individualized. So when you have the diagnosis, let's say you have the diagnosis prenatally, you still don't have a clue as to what that means. I didn't know if Kennedy was going to be able to breathe on her own, eat on her own. Um, if she was going to be able to talk, she was going to be able to walk. I know none of this. Um, she so far is doing all of those things. She has a twin brother. She's a, depending on the area, she's a little bit behind him, but she's absolutely doing, moving, progressing towards all those, all those things. There were some kids with Down syndrome and individuals with Down syndrome who are nonverbal. There are some who, um, who do have medical issues and if you have Down syndrome, you do have a higher percentage.
Betsy Boone: You've got a 50 percent chance of a heart defect, higher percentage chance of leukemia, higher percentage chance of Alzheimer's down the road. So all sorts of medical things. But then as far as what you can accomplish, the sky should be the limit. Recognizing that just like you or I Matt, I don't know how well you did on the SATs. I didn't, but it didn't mean that I couldn't be a successful businessperson. What, what we're finding now is that, and I see this with my typical kids, the higher I set the bar and the more supports I put in place to encourage them along the way while being hands off and letting them accomplish it, the more they can accomplish and the medical community is starting to rally around more. You don't get the negative side of the diagnosis as much and the more people see that Kennedy gosh, she's just like any other kid you go, yeah, she is. Well then you're gonna give her those options to grow and do well.
Matt Starnes: And then conversely, it's in the past with trying to just limit certain people, making assumptions with any class. That's typically some, sometimes you create the result. You basically are putting it out there because you're creating it. Okay.
Betsy Boone: Right. So in 1983, the life expectancy rate was 25, 25, 25 because, um, you were highly encouraged to, um, to terminate the pregnancy if you got the diagnosis, um, early or when you had the baby, it was encouraged that you put the baby in an institution because they're not, they're not gonna amount to anything. So just go ahead and we'll, we'll take care of them know, I mean, and, and that's, that's the end. And the, Matt: that was only 30 years ago or so. Right, Betsy: Exactly. And so when you think about it, so a 50 percent chance of having a heart condition, well, they weren't doing anything. They weren't applying any medical procedures to any of those individuals because they're not worth much. Right? So with the advent of folks digging in and diving in and saying, no, I'm not going to institutionalize. I'm gonna.
Betsy Boone: I'm gonna. Keep my child with me and I'm going to believe in. Great thing is you're seeing folks get their models out there. Entrepreneurs. So the socks we put in the bags, it was coming from Johns Crazy Socks. He's 22, he has down syndrome and he employs individuals with intellectual disabilities, so that's why we like his crazy soccer bags and the uh, the life expectancy right now is 60, so there's a, there's a huge range there. And to your point, the more, the more you rally around and the more you expect and give those opportunities, the better we will will perform. So with 21 and up, we want to encourage folks to look to individuals with intellectual disabilities for employment options. We want to create more independent living arrangements. Yeah, we all feel better as contributing members to society. So, you know, Kennedy's got to brush her own teeth.
Betsy Boone: Kennedy's got to walk up and down the stairs on her own. Now I'll help her go and down the stairs because that's a little tougher, but going up, you got to do that on your own sweetheart. And that's all preparing her for what she can do it. I'd love for there to be a myriad of choices and employment. It's great that there are organizations out there today and I hear a lot about grocery stores and office work. That's awesome. We'll my, my typical kids, I mean, it's limitless what they can do. I'd love to see a little bit more limitless for Kennedy.
Matt Starnes: I think my wife and I really enjoyed about the show is because you've got an entrepreneur where, yes sir, her mother is involved with it, but she really, I mean, I've seen her on the show create the ideas and it's just like, yeah, that's the same as any entrepreneur. You create these ideas because you're passionate about what you're doing and um, you know, the other, there's another gentleman there who is a rapper and he was invited by a rapper. I mean, just, just amazing stuff. So it's, it's like, yeah, there's so many more things like you're saying. Yes, it's great that, uh, off do office work for these. You can do anything a normal person can do. I mean, I would pretty much, I would think we're seeing that, right?
Betsy Boone: It's what do you get excited about doing my oldest son, he wants to be a professional soccer player. Well then what can I do to pay that way for him to go into soccer? So that's what I'd love to see more of. I'd love to see more of people connecting with individuals with down syndrome or getting to know them, finding out what they like and what they don't like. Um, I've got a friend whose son would love to be a country music singer right now. He just wants to help bands set up and break down. I mean, come on, somebody's got to have something out there where you'd be willing to give somebody a try. And our kids do well in. They do well with repetitive motions. Sure. Um, the, the reliability's high, the studies have shown that they're happier people. It, it does. That doesn't mean they're happy all the time. Don't get me wrong, I get that too. But, um, but yeah, there's, there's a lot that can happen.
Matt Starnes: For example, I mean a lot of musicians I know started off as roadies or things like that to kind of prove them and then, oh hey, we need somebody to play guitar or we need somebody who can do backup vocals. And then that's kind of how they get their breaks. It's really just from proving they can do something in the industry and then, I mean, that's, that's with anybody. I think that's really exciting. Well, great. Um, and just real quick again, if you could just go over the Facebook page and the um, the website address of people know how to get in contact with you because I know they want to check out these events and hopefully get involved as well.
Betsy Boone: Yeah, that'd be terrific. It's a. So on Facebook it's Kennedy Strong Foundation and on the web it is Kennedystrong.org and then there are different tabs, so go to events or go to support, go to donate. Matt: Okay, great. Thank you so much. I appreciate it. Betsy: Thank you. Matt,
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