Rachel Lippoff from 'A Kid Again' Gives Illness a Time Out

Abilities in Motion welcomes Rachel Lippoff from the 'A Kid Again' organization. On this episode, Rachel discusses how she gives children and parents relief from the everyday stress and anxieties of living with an illness. She creates "adventures" to fun and engaging locations where families can escape and rediscover who they are.

Slip away from reality in our brand new episode of 'Disability Talks.'

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Transcript

Intro: 0:02

Welcome to Disability Talks, a podcast produced by Abilities in Motion. I'm your host, Ed Granger. Join us to encounter unique perspectives on accessibility and independence, and to hear stories from everyday people living their most independent, everyday lives, where essential conversations find their place let's talk.

Ed: 0:24

Welcome to Disability Talks, a podcast produced by abilities in motion, a center for independent living located in Reading, Pennsylvania. I'm your host Ed Granger. I'm very excited about the opportunity to talk to today's guest. Rachel Lippoff is the Executive Director of the Mid-Atlantic chapter of A Kid Again, whose mission is to foster hope, happiness and healing for children with life threatening conditions and their families. But that mission statement only hints at what a cool organization A Kid Again is, which is why Rachel's here to tell us about it. Rachel, welcome to the podcast.

Rachel: 0:54

Thanks for having me Ed.

Ed: 0:55

And I guess, uh, what I'd like to hear is kind of in your own words, what A Kid Again is all about.

Rachel: 1:00

Yeah, well, as said so perfectly, we do bring hope, happiness and healing to families, raising children with life-threatening conditions. Our Mid-Atlantic chapter does this in New Jersey, Delaware, the Eastern half of Pennsylvania and the Southern tip of New York. So we serve all of those families and enrolling is easy. It's any child we're completely condition-agnostic. So any child with any life-threatening condition birth through age 20 can enroll with their family. And what we do is we provide adventures. We go to year round, cost free visits to amusement parks, sporting events, zoos, museums, we have holiday parties, we've done drive-through adventures, anything that we can do to help our families take a time out from illness.

Ed: 1:44

So what is your role there? And, uh, how did you find your way to the organization?

Rachel: 1:48

I'm the executive director and I was working with a large healthcare organization on the foundation side, uh, here in New Jersey and south Jersey. And, uh, wasn't looking to leave, uh, but A Kid Again came across my computer one day and I thought, what is this? And I, I went onto the website and was just completely captivated. And I love the idea of getting to build something from essentially scratch. Uh, and they were starting a new chapter, uh, building it out of Philadelphia to cover this big geographic region. And, uh, I put my hat in the ring and seems that they liked me too. And I actually started April 13th, 2020, right in the midst of, uh, quarantine. So I call us the quarantine chapter. We were, we were slow to, to grow because everybody was home and nobody knew about us and we weren't doing in-person adventures at first. We were fully virtual and we did adventures in a box, which we still do. And, uh, we've just grown so much in 2021. We went from about 45 families to over 250 and we've grown since then already.

Ed: 2:53

Wow. That's amazing. So talk a little bit about what the, what the challenges were when you first got there. And all of a sudden you're dealing with not only a new position, uh, but a but a COVID pandemic on top of it.

Rachel: 3:03

Yeah. You know, it was, it was just slow to build. And, and I think that's challenging in the greater Philadelphia area where our office is. We, we have a lot of nonprofits. It's just, you know, it's, it's hard to break through and be seen. Uh, but also it was tough to, to get placed in the news. I mean, what we do is so amazing and we're really unique, not just because we're a condition agnostic and we can bring these families year, round year after year on these adventures, but because we're here for the whole family. So not just that enrolled child, but their siblings and their parents, everybody gets to go on all of these adventures. And, um, it was really tough to get that in the news because of course COVID was the, the big news for, it still is, but was the main news for so long. Uh, but we kept at it. We have, uh, been building an amazing advisory board. We have some wonderful supporters and, uh, we work with social workers at local, well, I say local in our regional, uh, children's hospitals. And we work with child life specialists and we work with, uh, some disease specific organizations to refer families to us. And now that we're, you know, rocking and rolling, our families are referring other families to us because they're having such a great time. And, uh, we really overcome a lot of those challenges.

Ed: 4:23

Yeah, that's great. It sounds like you got the word of mouth going after you were able to sort of get your networks in place and, uh, you know, there's nothing better than families sharing stories with other families, which is great. Do you have any, any specific stories that stand out to you that you like to share?

Rachel: 4:39

I have so many, um, there's is one that I love to share. And, uh, there's we went to Dorney Park. We go annually to Dorney park, uh, in September. And, uh, we had a, a mom who wrote me afterwards and said that her child, um, has a, a port just, uh, on their, on their chest just below their shoulder. And that not only was it the first time in so long that she had seen her kiddo spend hours and hours, you know, smiling and being carefree and, and not worrying and, and feeling pain, but that, uh, he wanted to ride this ride. And it was one of those like rollercoasters where you pull the harness down from above you when it kinda sits on your chest. And she said, you know,"Honey, isn't that gonna bother you where your port is?" And he said,"Mom, I completely forgot about it." And, and that's what we do. We, we want these families to be able to come out. They don't have to plan a day out. We plan it for them. They don't have to pay for parking. They don't have to pay for admission. They don't have to worry about getting a meal or a snack. We take care of all of that for them, thanks to our partners. And they get a day to just be carefree and we try to do it every month or every other month. So they always have something to anticipate and then they get to participate in it. And then they have these family memories to take with them.

Ed: 5:56

That's fantastic. And I, you had mentioned that it really is about the whole family, so everybody gets to be a kid. Again, it's not just about the kid that is enrolled it's the whole family. So share a little bit about the decision or the idea behind making sure that siblings are included and that they're treated as, as important as any other member of the family.

Rachel: 6:15

Absolutely. So, uh, while our chapter is relatively new, uh, A Kid Again has been around for over 26 years and we were founded in central Ohio in Columbus. And our three founders are actually still really involved with the organization. And what they did was they founded this organization for families because they were involved with other organizations that were, you know, wish granting organizations, which are fantastic. And they were granting, helping to grant wishes for these kids. And what they realized was as amazing as that was, they wanted to keep granting, they wanted to keep giving them this happy, these happy days, and that they saw these siblings who are these kids' biggest cheerleaders and they're also missing out on life. So many of these families, um, are isolated. They were isolated long before COVID was a thing for the rest of us and the siblings, they, they need to feel like kids again too. And they need the chance to, to make new friends and to have those days out with their, with their brothers and sisters. And, uh, they just decided that that was how we would, we would run this organization. So it was built from other amazing ideas that are out there. And what we are is a really great companion organization for, for these other organizations that help these families.

Ed: 7:35

So I'd love to hear, uh, about some of your favorite adventures. I mean, not, not just that you've done there in the Mid Atlantic chapter, but maybe from, you know, across the country. And, and what are some things that you haven't done yet that you think you might like to offer?

Rachel: 7:48

Such a cool question. So, um, I love Dorney Park. I know I've already mentioned that, but I mean, I love a good rollercoaster and, uh, we have some families who don't get to do that otherwise. And to be honest, I really loved, uh, I mean, I love all of our adventures, but I loved the responses we got from our families when we went to Johnson's locus hall farm, which is in Southern New Jersey. And we took them apple picking and pumpkin picking, and it was part of our capes and crowns adventures. So everybody came rest as superheroes or, you know princesses, I, and, um, we had other princesses and superheroes there with them and just pick apples and pick pumpkins and take hayrides. And what I never had thought about before is how lucky my kid is that I can just take her on hayrides to go pick strawberries or pumpkins or whatever, really whenever we want. And we have families who've never been able to take their kids to do this and something that seems so simple and easy for someone like me was a really big deal for these families. And, um, at the farm, they had ramps for the, the kids who needed it to get on and off the hay rides. They just made it so easy for our families. And, uh, everybody went home with free apples and pumpkins, and it was just like, it was just the best day. So, you know, it doesn't have to be a big, huge, you know, amusement park rides. Sometimes it's, it's the things that you would think would be so simple. Um, some of our other chapters that have been around for, you know, 20 years and have a thousand plus families, um, have been partnering with, um, some of our other amusement park partners for, for all that time. We're nationally affiliated with the Cedar fair amusement parks. So here it's Dorney Park, in Cincinnati we've been partnered with Kings island pretty much the entire time that our organization has been in existence. Um, we, have Cedar Point that's out of Cleveland, all sorts of amusement parks. So I think that's a fan favorite. Um, we've done dream night at the zoo in Columbus for many, many years. And, uh, that's another one. And, and we're looking to be able to do something like that here in our region as well. And then another thing that's really cool is that we have an eSports team now for our A Kid Again kids and that that's something new. And our executive director in the Indiana chapter started us on this streaming for adventures and eSports road and is just taking us in so many cool places. So now we have kids who are, you know, we do adventures for those kids who are on that team and it's national, it's from all our different chapters and our market, uh, because the other thing is while we have seven chapters right now, uh, we actually have families that we serve in 44 states. So we're hoping to cover all 50 and move into Canada and become an international organization any day now. Uh, but, but this way, you know, when we can do fun national programming like this eSports league, which is really because we have this grant from AT&T, nationally, uh, that we, we can, we can bring kids together from across the nation and they meet each other and they get to build a community. And that's really what A Kid Again is all about.

Ed: 11:02

So you're, you said you've been around for 26 years, so you're, you're humming along and building the organization. All of a sudden COVID comes along. And that leads to the adventures in a box, which I think is another really cool thing and a really creative idea that enabled you to, uh, to find a workaround for the fact that you couldn't always, uh, be gathering in person and having that, uh, face to face connection. So, uh, share a little bit more about how the adventures in a box came about and how that kind of took off.

Rachel: 11:31

Definitely. So, uh, with A Kid Again, the, the staff at A Kid Again, right when I started had, had already begun, you know, this all started what March, 2020, um, they'd already begun pivoting, like right away. Uh, you know, everybody knows that A Kid Again, for some of our kids, we don't know which adventure may be their last, and we don't have time to stop and wait for in-person adventures to start again. So we actually immediately started doing virtual adventures first before the adventures in a box, and that we did, um, we did a, a, a huge magic show with magicians from around the world. We've done, um, dance parties with, uh, Slider. Who's the Cleveland Indians, uh, their mascot, we've done arts and crafts. We did a behind the scenes aquarium tour and, uh, of their shark tunnel. We've done all sorts of things. And at our chapter, we, we played a lot of virtual bingo. Our families really liked virtual bingo. And I'm actually thinking of bringing that back, uh, just every once in a while, we've send a bingo card home to each of the houses and for the family, with the bingo markers or candy pieces. So that's always fun, I believe in candy. And, uh, and we send some fun snacks and stuff like that, and we all get on and we play bingo together. And then we send prizes. I mean, who doesn't love that? Uh, but what we realized is we wanted to be able to do more. So somebody up with the great idea of doing an adventure in a box, and the first one we did was summer 2020, and, uh, each chapter does it a little bit differently. And the way our chapter in the Mid-Atlantic region does it is, uh, we did the summer box was with mini adventures. So we had, uh, outdoor adventures. So there was, um, you know, sidewalk chalk and bubbles and, and a scavenger hunt and seeds to plant, uh, and a shovel and all sorts of things and, uh, arts and crafts. And there was a 4th of July part of it with the mini adventure. So there was, um, some 4th of July recipes, some crafts there, some of those crazy red, white, and blue flag, you know, sunglasses that have the splits in them that give me a headache, but that are super fun for people. Um, and we had, uh, a game night mini adventure in there. So there were cards and dominoes and microwave popcorn and lemonade mix and more candy. And, uh, it was just really fun. And I actually got to deliver some of those boxes to some of the families and for me, because I was brand new and the chapter was brand new, it was my first time getting to meet some of our families. And it was just incredible. And I got to watch some of these kids open their boxes. We did it again that fall. We did another adventure in a box, very seasonal. And then we started getting even more creative. We've done a tie dye dventure in a box where we sent our families, every kid in the family gets, uh, a white A Kid Again t-shirt and then the family gets a, a tie dye kit, and we got such cool pictures and those kids still wear their tie dye shirts to adventures. We did, uh, a baking challenge, like nailed it kinda thing, uh, with the spring bunny cake. And we sent them, you know, the, the baking mix and the icing and the candy, again, the, the theme of candy and the baking tins that they would need, um, to recreate this cake and then said, go, you know, go forth and recreate the cake and show us what you come up with. And that was really fun. So this year and this summer we're gonna do another baking challenge. I haven't, haven't decided exactly the theme, but it's gonna be something fun. So I can't wait to see what people come up with.

Ed: 14:59

So you're, you're coming up with ideas all the time and then trying to put them into, you know, translate them into reality. And I know from your bio that you're a somewhat creative person yourself. Uh, you do some art and how, how much does it mean to you to be able to bring sort of your creative side? Cuz I can hear that coming out in what you're sharing about how those boxes are put together and your resourcefulness in making it happen.

Rachel: 15:20

Thank you. Yeah, I do. I love, I love the artsy craftsy and I love, I love to be creative. And um, I will say that each chapter has a program coordinator that works with the executive director and, um, I'm hiring a new one actually this week and that person is responsible actually for the creation and putting on the adventure. So we work together to, to do the creative bit and we work with our advisory board with it too. So it's not just me, but I really love it. I love that, you know, we can try new things. We did a, um, we did a Minecraft virtual adventure that was fun and that we will tweak and do something like that. Again, really, really anything that you can think of that would be fun for families. We, we get to try and do. And, and it's just such a pleasure to, to be able to, to be fun and creative and to know that you're changing people's lives by doing it.

Ed: 16:13

So now you have somebody or will have somebody that you can send to the Dollar Store to pick up all those things that you're gonna, surprises that you're gonna include in those boxes that people can't wait to open when one lands on their doorstep.

Rachel: 16:23

That's right. I, I will admit that. Um, I miss when, when I, I, and I had a wonderful program coordinator before who, who had to move on for great reasons, but I do miss when I don't gets to be the one to go to the Dollar Store and do those kinds of things. So, uh, every once in a while I try to tag along, but yeah, but it's really fun to, to work as a team and really, and really do fun things like this for families.

Ed: 16:44

And I know that some, at least some chapters have done hybrid events. So the adventures it's kind of a combination of being in a box, but also with kind of that personal touch, can you share a, a little bit about, or give an example of one of those?

Rachel: 16:55

So we actually did it last year for Valentine's Day 2021. Originally I was hoping that we could do a Valentine's Day party in person and it just, you know, we, we thought we, we thought the best of 2021 and it just didn't happen. So we pivoted as we do. And, uh, it changed it to a Valentine's Day adventure in a box. So there was all sorts of fun stuff in there for, for the kids and for the family to do at home. But there was a second portion of it where we were having a virtual Valentine's Day party. And so what we did was we played virtual bingo because again, I love it and it involves candy and prizes and we did arts and crafts together. And, uh, just got a chance to see each other face to face, even if it was, you know, over Zoom and just had a really good time. So that's always, that's always really fun to be able to, to have the dual part. And we had some families that just did the adventure in a box, and we had some families that did the box and also came, you know, came online and did the party with us.

Ed: 17:56

And I know in addition to, um, your staffing and you do have a, sounds like a small, but mighty staff there in Philadelphia, you know, you're also relying on volunteers quite a bit. So how, how do you find those volunteers and how important are they to making these things happen?

Rachel: 18:10

So we could not do what we do without our adventure guides. And that's what we call our volunteers, their adventure guides. And they are, they are the heart of, of making this happen. You know, you can have a great, great staff, but without some added help to welcome the families, to help guide them through adventures, to answer questions, our, our adventure guides are our photographers. They help us with our social media at adventures. They really do all sorts of things. They help us pack up the adventures in a box. They help us deliver some of the adventures in a box cause shipping can get expensive. And so it's really fun to give that personal touch to people as well. And, uh, we just, we couldn't do it without them. And every chapter is like that as well as our, at our national office, we all have volunteers and, uh, and we really rely on them and they come back for more. They really, they really have a good time at the adventures and meeting these families and, and getting to see your hard work in action is so much, it's just so much fun and we're always looking for more adventure guides and, uh, you can always sign up to, to volunteer with us and, you know, pick your adventures that you wanna help with. And it's just, it's such a great team effort.

Ed: 19:26

So how do you get a sense for kind of what, what adventures might be hits? How do you, how do you, you know, you're coming up with ideas, where do you get your ideas from and what kind of input from your families do you have for that?

Rachel: 19:38

So we always love to have input from our families. I'm a big kid at heart. So if I think it'll be fun for me, or if I have an 11 year old daughter, if I think she would have fun, I, you know, we try to do that kind of thing, but there's also the fact that our families have children again, age birth through 20, uh, including the siblings and, you know, there, we always want it to, to be something for everyone. And, and sometimes it is. And sometimes it isn't, we had that, that Minecraft adventure, we actually had mostly siblings who opted into that. And that was, that was who, who attended it. And that's okay because we are here for the entire family. And if the kiddo who's enrolled with A Kid Again is sick the day of an adventure and mom or dad can still bring the sibling, then the sibling and, and the parent can come. So we do, we do all sorts of things that way. And I think I've forgotten the question.

Ed: 20:31

That's okay. You, you can take them wherever you want them to go. I'm just here to, to tap into whatever you want to share. So I know you also mentioned that your organization provides, uh, I guess I'm quoting from the website here, comprehensive, practical support. So can you share a little bit about what that looks like?

Rachel: 20:47

We actually, last night had a really good example of that. We had a wonderful gentleman named Jerry Wade, who is donating his time to our families in this chapter. And he held a workshop for our families and it was a webinar and it was, this one was, you know, 10 basic steps that guardians and and parents can take to ensure the financial and, and healthy future of their dependence. And it covered all sorts of things. It was an overview, uh, workshop, and it was, he made it very interactive. The parents got to ask a lot of questions. Some of'em were very personal and specific to them. And some were questions that, that, you know, if I had been able to see everybody they'd be nodding their head, all of that. So I learned so much and, uh, and it was a hit and Jerry's gonna come back and do a whole series of webinars for our families. And they're gonna be things like, um, one will focus on the able act. One will focus on, uh, setting up a special needs trust and what that means. We'll do some that have to do with, with certain benefits that, that are important. One about guardianship because our parents have it. There's no one stop shop for information. When your child is diagnosed with a life threatening condition and you at your children's hospital, the families have amazing social workers that they work with. They have, uh, child life specialists, they have their doctors. Um, there are family support groups out there. There's so many things, but you just, you never get all of the information cuz there's so much out there. And I think what I found with working with, with Jerry is that one of the pieces that that team seems to be missing for a lot of our families is that financial component and making sure that your child will be secure after you, after you've passed. And so as tough as it is to think about something like that, we wanted to hold these workshops and it's it, our families were just so happy to have the opportunity. So it's a pleasure to work with an organization that, you know, thinks in broader strokes than just the, you know, the amazingness of an adventure. And really we can, we can look and see the needs of our families beyond that. So we're always open to new ideas. We ask for surveys after our adventures and annually for, uh, not all of our adventures, we don't, we don't inundate them, but we do offer for, um, some survey risk from our families to get ideas about new adventures, to get ideas about new services they may want. We do try to stay in our lane. There are organizations that provide other services, and they do it so well, and we, we wanna partner with them and let them do that. And they'll let us do this. And we can give everybody a more holistic, comprehensive life.

Ed: 23:32

Sure. And I, I know too, from like, as a center for independent living, when we're looking at, uh, you know, trying to support people and becoming more independent, um, and advocating for themselves, I noticed that on your website, you talk about one of the goals is to increase the resolve and the resilience of the people that you serve, make it just that bit easier for them to face all the medical stuff that they have to deal with. So can you share a little bit about how you, how that impact is seen in the results or your interactions with the families that you serve?

Rachel: 23:59

Absolutely. We have a great majority of our families who have told us that the services provided by A Kid Again attending these adventures have made them feel more like they're in a community, uh, less isolated. They feel like they are a part of something. I think one of the biggest things that people don't realize is the isolation factor. Even if your family is, you know, you have a child with a life threatening condition and you're not essentially quarantined at home, you can be out and about. You might look different from everybody else and people might stare. People might treat you differently. People might not know how to treat you at all. And then they ignore you and being with A Kid Again, you're going on these group adventures. You don't have to stay with the group, but you're showing up with a group of people who may not look just like you and may not have the same condition you know, their child may not have the exact same condition, but they, they know what you go through. And the parents get a chance to, to hang out and talk and share ideas and share services that, that have helped them. And, uh, the kids get a chance to get together. One of my favorite photos from our holiday party at Diggerland this past year is of a bunch of our A Kid Again kids just hanging out together. Some of them know each other from other organizations, some of them met at A Kid Again, and they're just, they're hanging out. Parents are somewhere else. And they're, they're just having a good time.

Ed: 25:23

You know, when you, when you're choosing or deciding on a place that you want to have an adventure and bring those families together, to have that community experience, how do you ensure that it's accessible for everybody?

Rachel: 25:33

That's such a great question. And one of the very first questions that we ask when we are talking with the new potential adventure partner, is it ADA compliant down to, you know, from the entrance down to the bathrooms. And we've had some that our, you know, where I said, we went to the farm that time and that's outdoors and it's bumpy and everything like that. But they made every effort to make sure that our families with kids who, um, are in wheelchairs families with kids who have other devices to help them with their mobility and kids who don't see well. And, and a lot of our families have parents who also may have disabilities that everybody could get everywhere, uh, with as much ease as possible. But it's the first thing that we check on. And, and we have spoken with some venues that seemed like they would be amazing fits in a really good time and they just, they just, weren't gonna they, they, weren't gonna cut it in terms of, of accessibility for our families. And, and we're sorry about that. But there are so many, so many places that are, you know, when we go to amusement parks, they make every effort to make sure that our families have, you know, the, the use of the lifts to get to, to the rides that are up high and, and everything. And, and our adventure partners work with us so closely, they go out of their way to make sure that our families get to do everything. And, uh, it's really a pleasure, but it's the number one thing that we ask, because if that's not available to us, then it's just not, it's just not a possible venue for our adventures.

Ed: 26:57

So what's a place that, uh, that you'd like to go in the, in the future? How about the near future? Let's assume that the pandemic is gonna quiet down and we're gonna be able to be in the same place at the same time. I'm sure you're looking forward to that. What's a place that you'd like to go to, or can't wait to get to when we're all able to be in the same place again?

Rachel: 27:15

So I will say that we are already doing in-person adventures again. So that's exciting, but where, uh, we really wanna go is we are hoping that Major League Baseball, you know, figures everything out soon because we have plans to go see a Phillies game this year. And we are really excited for that. We'd love to do some things with the Eagles. We have a really large geographic region. There's no reason why we couldn't do things with, with some New York teams. I know that may upset some of our Philly people, but we, we have families who are in, you know, central and north Jersey and Southern New York who may not, may not be Philly fans. Uh, so we, we would love to do some more sporting events. I think those are, those are things that they tend to be, um, an expense for families in the first place. And with some of our families, many of whom have, you know, some, they, I mean, their, their finances are tied up elsewhere with their medical bills. It's just not in the cards for them. And, uh, to be able to do fun, things like that. So we're hoping to partner more with, with organizations, uh, like the Eagles and all of that, but we, we've been very lucky in the Lehigh Valley. The Phantoms, the minor league hockey team is a partner of ours. And when they have some extra tickets, they reach out and say, you know, we've got X number of extra tickets and, uh, send, you know, feel free to, to let your families know, and our families can first come first serve to them. We'd love to do an, an actual adventure there. Uh, we're, we're always looking for new partners like that, but, but I'd love to get into more sporting events. I think that would be really cool.

Ed: 28:44

Yeah. You just mentioned the, uh, the financial aspect of everything and the, the impact on the families and the fact that these adventures would, you know, maybe not something they would be able to do unless they connected with A Kid Again. So how, how, where does your financial support, uh, come from? How do you find the means to be able to provide these opportunities and experiences for your, for your families?

Rachel: 29:04

Well, first, I definitely want to mention that there is no socioeconomic or economic hurdle that our families need to, to jump over, to become an A Kid Again family. The only thing that our families need to do, uh, regardless of their income, is to have a child with a life threatening condition. And as an organization, we are 100% donor funded. So individuals, companies, foundations, uh, we really, we, um, we have a lot of our adventures are through in-kind gifts. So for example, when we do go somewhere like Dorney Park, they provide the parking, the admission, the meal. So it's an in-kind gift for us. Um, but for venues where they're not able to do that, we do, we do partner with some amazing companies and some amazing individuals, and we've been giving some really generous grants and those sponsorships make it possible for us to bring our families on these incredible adventures year after year.

Ed: 30:08

What's one that you would like to possibly add or can conceive of being an addition to A Kid Again?

Rachel: 30:15

That's a great question. I would love for our chapter to get more into the eSports and streaming. That is such a big, fun thing for, I mean, for any age, but, but for, for the kids today and teens today, and it's a, it's really big in, especially, you know, the Philadelphia region, we have some incredible eSports arenas and things like that in, and we've been in touch with them and we would love to do, uh, an eSports adventure. We, we actually, I should probably reach out about that because I think we could make that happen this year. Um, but I think things like that that are a little outta the box, um, that are fun things to do, uh, in the winter because, you know, looking forward to, to things to do in the winter is important. I, you know, COVID is not going away. It it's gonna, we're gonna have ups and downs with it, but, you know, I can see flu season and, and COVID season in the winter being a time when we have some families who aren't as comfortable, uh, being in big groups, indoors, uh, even, even, you know, into the, you know, years in the future. So I would love to find some more ways to involve those families and let them feel the community and have those kids, you know, take part in that. So I'd love to be doing more eSports and I, I wanna continue doing adventures in a box to augment our, our in-person adventures. It's really fun. And the families can either do them right away, uh, or they can put them aside for when their kiddos are in the hospital or when their kiddos have just come home from a treatment and, and need something fun to like really pick them up. And I like that about adventure in a box. I like that it's, it's available, uh, you know, not just for one day, but it's, you know, lots of activities ongoing. So I'm really hoping that we can do more of that. And with, with more funding, we will be able to make that happen.

Ed: 32:11

Another sentence that I came across on your website is that your program establishes, I'm quoting here, uh,"ongoing, nurturing experiences that compliment, but do not overtake their day to day living." So what does that mean to you? That that's very interesting, uh, way to, uh, express that.

Rachel: 32:28

Yeah. You know, I think that a lot of our families, I would maybe even say most of our families, I dunno how they do it. They have, you know, whether you've got one kid or you've got five kids when you have a child with a life threatening condition and you're back and forth to the hospital, not always planned, you have medical bills and therefore financial concerns that other families just don't have. A lot of our families have gone from one income or from two incomes down to one and have had to add full-time care in addition to that. So you've cut your income in half, and now you need to pay somebody else to come help out with your child, because there's so much going on medically with them day after day. And we wanna provide a service that is something that they can opt into that is a value add. So, you know, one thing these families don't need to do is plan a day at a museum or plan a day at the zoo. Uh, what they wanna be able to do is go, and if they can't make it, they need to know that that's okay. Or if some of the family can't make it and the rest of it can't that's okay. And that's, that's the nature of A Kid Again, is we're here. We are planning these for you. Once you're an A Kid Again family in a chapter, you can opt into the adventures and if you can't make it, it's not a problem it's cost free and carefree for the families. And that's really, really important to us.

Ed: 33:57

So I know you've shared a lot about the families and, and the impact on them. And, you know, your website, again, talks about how they're able to support one another. So they're actually giving back by coming to these events and supporting the other families and contributing to that sense of community. But to be more explicit about the voices of the families that you serve, I just wanna read this piece for our listeners, from your website. And this is a quote from one of the families that's quoted on there. It's to great website. People should go check it out. Uh, it's akidagain.org. And the website's great because it, it captures the voices of the families that you serve. It talks about the numbers that, you know, what you're contributing to the families, things they couldn't do otherwise, but it's also fun and colorful. The website itself is an adventure that you can spend time on there, checking out the cool stuff that A Kid Again has been doing all across the country, including visiting, it looks like every zoo in Ohio at one time or another. So apparently they're big on zoos in Ohio. So I'm just gonna quick, uh, just read this quote just to, to, so the families, you know, have the, have the voice, uh, come through here,"A Kid Again is a lifeline, something we can point to each month and look forward to as a family, we make sure to put those events in big red letters on the calendar. And it seems to make the yucky medical stuff pale in comparison."

Rachel: 35:08

Yeah, I get teary when I think about it, it it's, it's really, um, it, I feel really honored to be working with an organization that, that actually changes people's lives for the better, that really something so simple as, you know, some, an event to look forward to, uh, for these families is, I mean, what could be better than just providing smiles and helping people feel like a kid again. And I also wanted to say about our website on the backend. It's not just the folks in the chapters making all of this happen. We have an amazing staff at A Kid Again, in our national office. They do everything from outreach to markets in the country that where we don't have chapters, um, helping families, uh, so that if there's no chapter near you, you can still be an A Kid Again family, we have shared services, they do our IT, they do our marketing, they do, we have an amazing PR firm that we work with. They do it all. I mean, and finance. I mean, it's just, it makes it possible for the staff at the chapters to focus on our day to day, knowing that, that we have support and that the creation of our, our materials on our website is gonna be just top notch like that. It's a real pleasure. It's, it's just not always like that. Where, where people work and, and it really, A Kid Again is a true team effort. Everybody's first thought is our families, everything we do. Uh, and, and it's, it's just, I don't know. There's nothing like it.

Ed: 36:41

And, and from talking to you, it sounds like you get to be A Kid Again, as well in your job, uh, and are taking advantage of that opportunity, especially when it comes to, uh, candy.

Rachel: 36:50

Oh yeah.

Ed: 36:50

Lots of candy. Um, always candy...

Rachel: 36:53

Candy. Toys.

Ed: 36:53

Can't have too much candy. So, so how could families that are interested, uh, how can they enroll? You talked a little bit about the eligibility. Like, what does that process look like and how can they connect with you if they're interested in joining?

Rachel: 37:07

So we make it as easy as possible. We have, uh, right on our website and it's akidagain.org/enrollnow. And it's an online, uh, application. Uh, you, a lot of our social workers at, at hospitals, children's hospitals have cards that they can hand families that have QR codes, and they can just sit there in the office and do it right there. Uh, they can just go online on a computer, on a phone and fill it out. And, uh, that's it there's no, there's no information. They would probably need to look up it's about their family and about their child. And that's, that's what we ask for. We also have that form on our website. It's downloadable. It's not yet able to be done just, just online in Spanish. And we are working in our central Ohio uh, chapter is doing this through a grant that they've received and they're working to translate a lot of our, including our enrollment application into many, many languages, Vietnamese, Mandarin, you name it. And so we are, we're always hoping to be able to be as inclusive as possible and make it as easy for families to find us and enroll with us as possible. So if, if a family may not be ready to enroll or they just wanna learn more, how can they find you, locate you on, on social media, on your website? I mentioned akidagain.org, which is spelled exactly the way it sounds, which is always helpful. How can, how do families find you and learn more? Well, our chapter has a Facebook page and you can find us. You can either go on Facebook and, you know, just type in"A Kid Again Mid-Atlantic" if you type in"A Kid Again," our national office will come up as a, as a page, our national page, as well as all of our chapters, but you can also find us on Facebook with the,@atakidagainmidatlantic all one word. We're also on Instagram. Our Instagram handle is a_kid_again. Somebody clearly got there before us with one word, A Kid Again. We have a YouTube channel, we have Twitter, find us and follow us. And whether you are a family, who's thinking of enrolling, uh, and, and I'm always open to, to talking to whomever, or if you are somebody who would like to support the organization, either as one of our adventure guides or you're thinking of donating, or you have a contact somewhere for, you know, maybe you've got the next amazing adventure venue, please reach out because we are, we're just, we're never done growing. We never hold a wait list. Ever. None of our chapters will ever have a wait list. Any family that wants to enroll will enroll. We, like I said, in the areas where we don't have a chapter, you can still be an A Kid Again family. Cause we have national staff members who work in with all of our markets and bring all of those families in. And when we have areas of the country with a, a good concentration of A Kid Again families, even if there's no chapter, meaning no boots on the ground in that locale, they're working to try to find in-person adventures. So it's not always just virtual and, and adventure in a box. Uh, every once in a while, there's a, a popup adventure somewhere around the country for those families. So it makes sense. It makes sense to enroll and, and see where it takes you. We'll never, we'll never have a cost to what we provide. We will never ask you for anything other than, you know, the, just show your smiles and come out and, and have a really good time. And hopefully, you know, you as a family, you get to, to just have a, have some time out from illness.

Ed: 40:34

Well, Rachel I've really, really enjoyed our conversation. Thank you so much for being on. It's been great to hear you share your passion for what you do and the organization you work for. Not everybody gets to say that. I'm fortunate. I get to say that working here at Abilities in Motion, and it sounds like you are very much, uh, in the same, in the same boat with me. So thank you very much. Is there anything else you'd like to share?

Rachel: 40:56

No. I just wanna thank you so much for having me on Ed. This has been so much fun. You made this very easy on me, which I appreciate. And, uh, I'm, I'm just really glad that we did this and thanks for helping to get the word out about A Kid Again.

Ed: 41:09

You're very welcome. Take care.

Rachel: 41:11

Bye.

Outro: 41:48

Thanks for tuning in to this episode of Disability Talks. Want to be a part of the ongoing conversation? Visit our website at abilitiesinmotion.org or connect with us on social media.