#46 Children with Diabetes and Friends for Life with Marissa and Leigh

0:01

You're listening to episode 46 of the sugar mamas podcast. And today I get to talk with two ladies who are associated either professionally and or personally with the children, with diabetes non-profit organization. They're going to tell us all about what children with. Is how it started and the amazing resources they offer to the type one community. There's going to be a special emphasis on their friends for life conferences, which I have no doubt when you're done listening to this episode, you're going to want to go buy tickets for one of their conferences. It sounds like a lot of fun for the entire family. Let's get started

Katie: 0:43

You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks. hey everybody. I am here with Marissa town and leave Fickling today. And these fabulous women are both connected to children with diabetes. And I'm going to just go ahead and let them introduce themselves and tell us their connection to type one diabetes. And then we will kind of dive into what exactly children with diabetes is and does for the type one community. So Marissa, why don't we go ahead and start with you.

Marissa: 1:57

Thanks, Katie. My name is Marissa and I have lived with type one for 32 years this year. And I have been going to children with diabetes, friends for life conferences. Since they started a full disclosure. My dad had. Started the website back in 95, when the internet started, it lived in our basement. The house was very cold because we had to keep all the servers cold in the basement. It was pretty hilarious. Kids, these days don't really understand this kind of concept cause you know, with wifi everywhere now. And I decided early on, you know, as a result of going to the friends for life conference, That I wanted to dedicate my life to helping other people with diabetes and their families. So I went to nursing school and I became a nurse, and then I became a diabetes educator.

Katie: 2:49

Wow. That's awesome. I had no idea your dad started the whole thing back in, so that's almost well, 25, almost 30 years ago. So that's really cool. Lee, what about you? Go ahead and introduce yourself. Tell us your connection to type one diabetes.

Leigh: 3:03

Great. I am Lee sickling. I live in North Carolina. I am the parents to 12. To a parent of 12 year old twins and my daughter has type one diabetes. So she was diagnosed when she was three years old. So I am a diabetes mom diabetes, mama bear, I think at times. And my background professionally I am an attorney. I'm not practicing right now, but my specialty is working with accommodations both sort of in the educational setting, in, and then in the employment setting. And so connection to the diabetes world. Of course, I feel like I am sort of round the clock accommodations, either helping my kid with diabetes here at home or trying to assist sort of my diabetes family out in the world with their needs. Either in school or in the workplace or just trying to kind of go out and fight battles. The, you know, people with diabetes or people with other disabilities may face, I'm trying to use them skills to be able to help other people out there. My connection to CWD was finding the organization sort of on day one which feels like it was 1 billion years ago. But you know, on the day that she was diagnosed, I sort of felt like that my life was completely over and really unsure how we were going to be able to move on because. You know, when you have twin three-year-olds and you think that your entire life is ahead of you, and then you have this diagnosis and you come completely crashing down. We really were unsure how we were gonna rebuild. So I took to the internet from the mom chair in the hospital and enter in children with diabetes because that was what I had a kid with diabetes. And the very first thing that popped up in that internet search was the organization children with. So on day one, I found children with diabetes. And so while I felt like my life ended with that diagnosis my life really began with finding the organization and starting fresh with CWD. You know, for nine years, they've been there for me every step of the way, every high and every low. And there's really just no way that I can sort of repay what they've given to me. And so I try, you know, with, with every opportunity to be able to give back because you know, again, I just, don't how we would've made it through it without the organization, without the conferences and without the connections that we've made so far.

Katie: 5:26

Yeah. I feel like that's how so many type one parent journeys start is on the internet in the hospital. I've already had so many people reach out to me and be like, hi, my. Diagnosed, you know, a day or two ago where we're still sitting in the hospital. And I just wanted to say, thank you for your podcast. I've already listened to it. You know, it's just, I think people are just so frantic when they're there and their child is first diagnosed that they're just searching for anything that they can find to. Make the transition into the type one world a little easier. And I will say, I do want to talk about the website a little bit later in the show because I've been on it this week. Just kind of like looking through the tabs to, you know, do a little research for the show today. and it's a fabulous website, like kudos to your dad. I'm sure it has evolved immensely over the. Twenty-five 30 years, but it's a really beautiful website and it has really good search optimized search engine optimization as somebody who has built a website herself, like it pops right up when you try to type in, you know, children with diabetes or kids with diabetes. So we'll talk about that more a little bit later, but Marissa, I want to go back to kind of where it all started with your dad. So you must've been what two at the time when he, okay. So.

Marissa: 6:39

then, you know, the internet didn't exist when I was two. Right. So because it was 1989. So then, you know, actually what happened. We have moved from the DC area to Ohio. And my parents had been working for the department of defense for a while and they decided, you know, this is too much travel, you know, let's, let's go ahead and, you know, settle down somewhere. So we were doing that and we got out there. We, they bought a house. My, my baby brother was like an infant, like a newborn. And my mom had driven us across the country in the minivan. And my dad then lost his job. And so in losing his job, he then was like, well, I guess I'm going to create a way for us to connect other to other families living with diabetes, because we had already realized we had gone to family camps in the DC area, and they had seen how powerful it was for us to meet other people with diabetes, for me. And then for my parents to meet other parents, they saw how helpful that was. And. Making lemonade out of lemons. You know, he wasn't, he didn't have a job at the time he built the website, you know, from scratch. He had a degree in math but had worked with computers, you know, the early computers with his previous jobs. And, and it was literally just to tell my story and help other families connect with other folks.

Katie: 8:09

Well, so did, at that time, did that become his job or did he, was it sort of his hobby at first?

Marissa: 8:15

It was, yeah. He ended up taking, you know, a lot of different jobs for a while. And and then I think, you know, well then in the year, 2000, so pre social media, we had these, we had chat rooms and then we had. And the way that the conferences started was this woman, Laura, Bella DOE, who has a son with type one who lives in Michigan, said, Hey, we're going to go on a family vacation to Orlando. Does anybody else want to come? And 500 people showed up. So it was this realization of, oh my gosh, there's this huge gap that. We could fill and we could really just, you know, keep helping each other. And, and that's how it started. And now typically we have, we had to limit the number of people that could come last this past summer because of COVID. We limited it at a thousand, but typically we have about 2000 to 2,500 people that come every summer to Orlando. It is very hot. But you know, kids are off school and. It's really, it's hard to describe. I think the feeling of being at friends for life, and I think Lee kind of alluded to that as well, but it's, it's just amazing to be in a place with so many other people that really understand the ins and outs of type one diabetes, which is something that does affect every aspect of your life. When you have a family member with.

Katie: 9:43

Yeah. I, I want it. So I'm only two hours away from Orlando and I really wanted to go last summer. I was kind of like you guys were in limbo for a little bit about whether or not you're actually gonna have. In-person. And so I was kind of like waiting and to see, and we had already, we already had a trip planned. We go out of town every year for a week in the summer with some friends and family, and it was scheduled for that week. And I was like, oh, next year. So. 20, 22. definitely want to get there and check it out. It sounds amazing. So I want to talk a little bit more about the friends for life conferences. I had some listeners actually reach out to me specifically to know more about the friends for life conferences. And I know you both speak to those, but Lee, I know you mentioned in our emailing back and forth that you've been to several in several states over the years. So how would you describe it for.

Leigh: 10:35

I think, especially if your listeners have never been before sort of explaining. The experience. I think that, you know, especially if you're coming from out of state it's a big commitment, you know, to think about traveling with diabetes in the first place. You know, that's pretty big. And then thinking about coming to Orlando in July, like Marissa said, like, I'm not sure that there is a hotter place on the planet. you

Katie: 10:59

literally a swamp. It's a swamp lady, C.

Leigh: 11:01

around the 4th of July. So like getting your mind wrapped around all of that at first is pretty difficult. You know, thinking about like preparing for traveling, diabetes, Armageddon, like packing double of everything and you know, like coordinating, like, you know, are you traveling on a plane? Do you need TSA cares? How will you get through security carrying. Needles and, you know, what, if they take my juice boxes that juice boxes or medicine you know, so trying to logistically plan for that. But I think that one of the biggest things that got me in the very beginning and just with the safety of the three of us today and your listeners my husband is not always the touchy, feely kind of guy. So his feelings on day one of the conference and my feelings were sort of completely different. But like Marissa said being in a gigantic ballroom, surrounded by 2,500 people and hearing someone's Dexcom alarm beep for the first time and wondering is, I mean, it gives me chills right now. Like, is that my kid? Well, it's not my kid, but it's someone else's kid and should I go help them? Like, I don't even know whose kid it is, but I can hear. And like, I've never met these people before in my life, but here they are. And this is what I never knew I needed, you know, because when you go back and you think about being in that mom chair and feeling so completely alone, And then suddenly there you are with 2000 people you're not alone anymore. And they're strangers, but they intimately know what you're going through. And I think that, you know, that's how it begins. And then by the end of the weekend, or by the end of the week, you know, these people that were strangers are now your family and it's like that for everyone, including the non touchy feely husband. Your children, the sibling every single person that comes with you, the grandparents. So, you know, there's educational programs for all ages. The children go to their own programming and it's staffed by amazing youth programming staff. There's a group called kitty Cove that handles the youngest members. And again, it's not just for kids with diabetes, it's also for their siblings. And so I think that the youth programming leaders do a really great job about making sure. That siblings are treated, you know, properly to that, you know, diabetes affects the whole family, not just the person with diet. And so, you know, there's a lot of focus on the siblings as well and how they feel about the diabetes and how it affects them. So again, there's a programming for kitty co for the littlest members. There's programming for elementary, for tweens and then teenagers. So that's sort of the way that the youth programming is set up and all of those are fully staffed, not only by youth programming leaders, but also by nurses that are in there inside of each room. And. The ability to be able to contact the parents. So it's not like you're not ever going to see your kid again. And then parents go to programming also at the same time. So those are sort of run concurrently. Parents have different options of things that they can go to during the day. While the kids go to their own programs and then there's meals and their social events and all sorts of different things along with downtime and free time for you just to kind of be able to do what you want to do. The amazing sponsors have a gigantic exhibit hall where they put on, you know, sort of flashy showing you. To show you all of the new technology all of the swag that you can fit into suitcases, extra suitcases and bags that you want to be able to take home. And so it really is sort of just this gigantic experience a vacation, like no other built around one common theme of diabetes. And that one of the things that's really important to me for listeners to understand. Cause I think that there's sort of this misunderstanding about it being in Orlando. And so, you know, when I see sometimes first-timers who reach out about it, you know, they say, well, tell me about. You know, do we get free tickets to go along with Disney? You know, it's really not about Disney. It just happens to be onsite at Disney right now. And there's ways for you to be able to get discounted part tickets, you know, that you might want to do at the beginning before the conference starts or at the end. But really the purpose of going is for friends for life and for the conference. And so, you know, it's really best for you to be able to plan your conference time making sure that you're there to be able to be with your friends from. And to take advantage of all of the things that's happening at the conference. And, you know, not really feel distracted by needing to be able to work in all four parks and, you know, get on a bus and be able to go to Disney Springs and things like that because you know, your purpose for being there is, is finding your community, finding your tribe and taking advantage of what the conference has to offer.

Katie: 15:46

Yes, absolutely. And as a Florida resident, I can tell you with out beyond a shadow of doubt, that the last place you want to be on earth in the summertime is a Disney theme park. It is so hot and it is so crowded everybody. And their brother is at Disney. However, with that being said, if you are from out of town and you. Like couple, the two together. I feel like that'd be a great opportunity because you not only get, do you get to attend the friends for life conference, but you maybe get to fit in a little, a little trip to Disney. So I'm just saying as a Florida resident, you will never see me there in the summertime. It's not happening. So you mentioned that there's, there's lots of programming for both kids and adults at the conferences. What about, well, first of all, is that sort of like a, what can people expect? Like kind of eight to five is the programming or. Half day. How does it usually run?

Marissa: 16:40

So usually if it's okay, I'll jump in. So usually we have sessions from around it's I think it is usually around nine till four 30, but again, there's like a snack break in the morning. At coffee break for the adults. And, and then there's a nice long lunch, And then after the, in between the two afternoon sessions, there's also a break. And then in the evening, there's a little break between the sessions, the end of the sessions and the evening social.

Katie: 17:09

Okay.

Marissa: 17:09

You know, it's, it's sort of designed like medical educational conferences, but it's geared for families. So what's cool is, you know, like Lee mentioned is first of all, we have stuff for the siblings and you know, a lot of, a lot of organizations sort of miss that whole. Part which I understand because it's difficult because you know, it's something that's a little bit more nuanced and hard to navigate, but you know, a big focus of CWD and friends for life is, is the whole family and the, you know, the psychosocial side of things, because while, you know, a cure is great and we all want that, you know, we need to figure out how to live with this. And that's, that's sort of the motto of the mantra of CWD is, you know, care today until we have a cure tomorrow. And so. Finally, my sister's birthday is July 10th. Okay. And so we have been going to Disney every summer. I mean, when we were kids and she's three years younger than me and one year I, you know, when she was younger, she asked like, why do we always have to go on this diabetes vacation on my birthday? I don't have diabetes. And so thank goodness she spoke up about that because it was a. Valid point and you know, there's this whole side of, well, Marissa says that her blood sugars low so that she doesn't have to do chores, mom and dad that you know, is important for them to talk about. I have since bought my siblings juice boxes for Christmas, like in our adult years, because of the stuff that's come out of, you know, the sibling programming which is really it's beautiful. Honestly, I mean, you know, we all have our stuff, right. But making sure everyone has a safe place to talk about their issues is important. And so we bring in not only like the endocrinologists and the nurses and the diabetes educators, but we bring in the diabetes, psychologists, we bring in social workers, bring people that help everyone, you know, have tap safe discussions and learn coping skills, learn resilience, learn things that will help us keep on on those days. You know, that, that are harder, that are harder.

Katie: 19:16

Yeah, I love that. I love how you have the, kind of the more medical, technical professional side of diabetes, but then you also have these social events where families can just mingle. Oh, I hit my microphone there. Sorry. Families can just mingle and get to know one another and share stories. I'm assuming.

Marissa: 19:33

Yeah, absolutely. And the other thing that's cool that I wanted to mention is some of the diabetes tech companies will actually come and let people do trials. So like, if you are up. A new pump, for example, or a new CGM. And you're looking to try that out. There are trials that you can do for free at the conference, which is really nice. Some clinics will let you do that as well, but I think it's a little bit harder. You know, people get worried about things nowadays. They used to do it more often in clinics than not. So that's something that we try to offer so that you can get sort of a taste of the technology before you commit to that for four years with.

Katie: 20:10

Yeah, absolutely. That's great. That's really cool. Lee, as a, as a mom, who's been taking her family to these conferences for the past several years. Has, do you usually bring everybody or is it sometimes just you or how did, how do you do it?

Leigh: 20:26

We bring them all. And it's been interesting to be able to watch. What's happened, you know, and I sort of like, I look at Marissa and her family and I look at you, she mentioned Laura earlier. And so it's been interesting to sort of watch the organization from afar because I feel like that Marissa and Sam, who is Laura Sohn, they were sort of like the first group of CWD kids. And so the organization was built around that group of children that grew up with the organization. And so now, you know, they really are these successful adults with type one diet. And then I think that there's this new phenomenon of these new kids that are younger, like my own kids who look at Marissa and her peers. And they see them as the adults with type one that they want to grow up and be like, And so that's the interesting thing of the organization is that now, you know, it's sort of coming full circle, that it did what it needed to do for Marissa growing up as a child. And now it's doing the same thing for my kids. And so just like, as she grew up with the organization and she now has become this very successful person, You know, I'm watching my own kids do the same thing. And so we do take them. It's funny because they're twin agers and they have pretty terrible attitudes at times. And so, you know, it's, it's it's really kind of, it depends on sort of where they are in time in their life and sort of what's going on with the programming. What I find is that my son has. And he is a rule follower to the core and he is a schedule follower and he needs to be early to everything and he does not want deviation from anything. So oftentimes it will get sort of, you know, as the schedule goes on in the week, you know, it is heavily programmed. And my daughter, the one with diabetes kind of wears out with things at times. And so when it gets to a certain point, she sort of wants to say, well, do I have to go to this session in might want to take a break? Whereas my son is like lined up at the door of the conference room, ready to be the first one in and wants to be the last one picked up and wants to fully participate in every single session. And do every single craft and do every single activity that there is. So, you know, I think everyone in the family gets something out of it it's different and it can be different at different conferences. So, you know, we've talked about the one in Orlando, which is the big one. And you know, I think for your listeners, if it feels overwhelming to be in Orlando in July with 2,500 people with diabetes, you know, definitely look at the website. Some of the regional conferences, because those are weekend conferences and those began on a Friday evening and end on a Sunday afternoon. And so those were like a weekend where you have a full day of programming all day, Saturday, all day Sunday with the little tiny thing on Friday night. And so that feels a little less overwhelming in terms of the amount of diabetes that you have. So instead of like having 2,500 people, you may have 500 people or 700 people depending upon the location of where it is. So we've been to falls church.

Marissa: 23:38

Okay.

Leigh: 23:38

been to Anaheim. Spring there's one in Indianapolis. And so all of the schedule for the regional conferences is also on our website. And so are really great because they're much more intimate, you know, in terms of smaller number of participants, you really do get an opportunity to sort of meet the faculty that Marissa was talking about. So when you have the coffee breaks, when you have the meal breaks, like you can actually go and talk to these people. You know, a great example is Gary Shiner, you know, he's so famous for writing all of these books think like a pancreas like you can actually have a meal with him. So rather than like seeing him speak in a room and like take pictures of every single slide that he posts up, like you can actually talk to him in the hallway at some of these conferences. And so, you know, I think the regional conferences are a great place for you to be able to go and sort of. Get a really good taste of what friends for life is about, but on a smaller scale the friendships are still there. The social events are still there. But again, sort of on a smaller level and all of the youth programming is still there too. So I think that, you know, again, the kids get something different out of it at every event. So we're youth programming in Orlando might have, you know, hundreds of kids at a regional conference, it might have 20 or 30 kids you know, in the group. so I think that, you know, again, it is important for us. We do plan our summers around it. We do plan sort of there the weekends around traveling for the regional conferences too, because of what we get out of it. And it just seems like as soon as my diabetes tank is empty, there's an opportunity for us to do something with friends for life that helps me refuel and then I can make it just until we get to another one. And then I'm just about empty again.

Katie: 25:17

Yeah, I hear that, that, that word is relatable empty. It's been a rough week here in my house. I don't know. It's just been a roller coaster of a week. It's always, when you think you've have like, gotten a handle on things that diabetes is. But you don't, you really don't. Okay. Well, I mean, I'm sold, listen, y'all had me at coffee breaks. That's all I needed to hear. There it, it sounds truly wonderful and I feel very fortunate that I live so close to Orlando. And then I can participate in it. Like I said, I've already got it marked off for next year. I'm excited. So what about the other services that children with diabetes offers? Cause I know they do so much more than just the friends for life conferences. Marissa, tell us a little bit about the other resources they provide services. They offer. Hey guys, it's Katie here. We're taking a super quick break. So I can tell you about the product feature of a week since the holidays are coming up and you might be looking for some gifts for your little type one warrior. I wanted to tell you about the I heart guts, plush pancreas. That's right now you can buy your T one D a. Pancreas like acute one, not like a slimy yucky one. It's like a stuffed animal, but not an animal. A pancreas. Check it out. There's an Amazon affiliate link in the show notes. I will also leave a link in the show notes to the sugar mamas podcast. Buy me a coffee page. What is buy me a coffee? Well, it's a no strings attached way for listeners like you to support the show. Every dollar donated will go to making this podcast come to life each and every. Your gift can be a one-time donation, or you can sign up to be a member for as little as $1 a month. Go check it out. Link in the show notes, or you can find it at www dot. Buy me a coffee.com forward slash sugar mama. All right, let's get back to the show.

Marissa: 27:07

Yeah. So, so we've been growing and what what's been really cool is actually, you know, taking advantage of, of the pandemic and being quarantined and all of that we're quarantining this week. Cause both of our kids were exposed at school speaking. So I understand the week of fun. So one of the things that we have done is first of all, we had never done virtual conferences. And actually, I think friends for life was one of the first virtual conferences. You know, most of the, even like the scientific conferences, they, they just had canceled or they had done a few sessions and there hadn't been anything where, you know, there was programming. And also we had these hallways where people could, you know, go into a virtual hallway and pretend like you're saying. Friends for life in the hallways. And you know, the team last year, this was before I officially joined CWD they created this. Event that was virtual and actually 5,000 people signed up, which is more than, you know, we've had. And we could really have, I mean, that would be, that would put us at over the fire marshal capacities in our conference space. So, you know, one of the things that I'm, I'm really, really enjoying is that for people who. Travel for people who don't feel comfortable traveling for people that are signing on from other countries, which we have a lot of people that have signed on from other countries, you can access data and information. And this, these sessions that are from these world renowned leaders in diabetes research in clinical care and everyone who is just, you know, they're presenting their information to help make our lives. Better and make things easier for us. And it's all free. And, you know, we've been really, really lucky that our sponsors have stuck with us and helped us continue to be able to provide programming, you know, because as you may have seen. The increase in incidents and diagnosis of type one is happening. We're also seeing an increase in diagnosis and type two in kids. You know, and so, you know, the, one of the goals that I have as, as the clinical director is to, you know, expand on the information that we have on our website, things easier and more accessible, keep things at like a low literacy level so that people who you know, have a harder time with. Yeah. I mean, honestly, when you guys, when your kid was diagnosed, I cannot even imagine how difficult it was to understand everything. Like we need to make everything very easy at the beginning because it's so overwhelming. And it's, it's, there's so much information. Just because of the nature of how nuanced diabetes. So again, you know, we've been able to do a lot of virtual programming. We actually have a virtual conference the week leading up to diabetes world diabetes day, which is November 14th. doing instead of we were going to be in a white Plains, New York, a couple of weekends ago, but we were concerned about the Delta variant and pivoted, and we are going to do this virtual, you know, every evening we're going to have two different sessions. then on Sunday, we're going to have. Celebration video that we're working on for just celebrating a hundred years of diabetes and what people with diabetes have been able to do. You know, insulin is, is such a gift, right? But it's obviously not a perfect system. So creating virtual opportunities that can be reached by people who, who aren't able to come has been really, really a joy for me. One of the other things that we're doing is something called the screen side chat series, and we're going to be doing one this weekend on Sunday with Kim rose. So it's October 24th. And. She is going to talk about eating and drinking throughout the holidays and sort of navigating that, aspects of living with diabetes. And those have been really fun because it also, know, again, it's, it's an opportunity to, to hear from different people and expand the faculty that we, we bring difference for life. Which I, which again, I've really enjoyed. So we've been doing screen side chats. We did them more often in the beginning of the pandemic. But I think, know, people have gotten a little zoomed out. But there is still a muffles, which is the moms of friends for life group going pretty strong. If Lee wants to talk about that,

Katie: 31:21

Yeah. Tell us about that,

Leigh: 31:23

We do, we've got a group. Which we like to think we're the best group. But we are called them awfully the moms, the friends for life. And so we meet every other Monday Eastern time at eight o'clock, which for me is pushing it right up to my bedtime which is not necessarily my actual go to sleep time. But my time where I feel like I need to go into self care mode of leave me alone. It's mommy's bed time. But yet we gather in a zoom room and you know, it's, it's interesting in the room because sometimes we talk about diabetes, but most of the time we don't you know, and we just kind of just joined together. We stay as long as we want to stay. Sometimes I stay for 30 minutes. Sometimes I stay for five. It does seem like that it never fails that most of the time, it's like a double diabetes thing for me, where it's like Dexcom change and site change. That's somebody waits until like 7 59 to where they need all of that performed all at once. But yeah, it's just interesting. And it's fun to be together. There's always like new moms that join us. You don't have to have gone to a conference before you don't even have to know anything about CWD. And so, you know, Stop in and join us and ask any questions. It's always really popular, especially like at the beginning of the school year, because lots of people have questions. You know, my kid needs to get on the bus. How do we handle this? My kid's going to be going to a new school. How do we handle this? My kids are going to be in the marching band. What do we do about this? So very helpful, sort of, as you make transitions into the new school year afterschool camps, sleep away, camps diabetes camps. So, but those that have school aged kids and then it's always good because there are some been there done that moms that joined us too, that are sort of the grounding factors that will tell us to chill out very respectfully, but like when the younger moms kind of gets spun out of control, There'll be like, you know, you're going to survive this. And so that's always very helpful to me just to kind of even just look at their faces and the. That have gotten through this. And I think that that's helpful, you know, and I, and I sort of like, Marissa's mom will join us. And so, like, I look at Marissa's mom and I think, you know, you made it through this. And then I think that there are times that people are now looking at me like that. Like I am now that mom, that, like, I made it through that and it is true. Like I did make it through that. You know, having a toddler with diabetes. And so it's just helpful, you know, to kind of be on there with everybody. And so definitely, you know, we invite your listeners to join us, just to kind of learn a little bit more about you know, sometimes definitely as we get closer to the conference or as we get closer to an event, then we do talk more about those things. You know, cause people will ask, what do we pack? You know, they say the conference rooms are cold. Is it really cold? Yes, it's freezing cold. And so we do talk about like packing lists and things like that. again, every other Monday, be information on the CWD website about how people can sign up to join those homes.

Katie: 34:21

Okay. Awesome. I can leave a link to that specifically in the show notes, but also of course, a link to the CWD website itself. So yeah, I can link to anything you ladies would like me to in the show notes. Marissa, I'm curious to know, is your dad still involved?

Marissa: 34:36

Oh, yeah, he was actually that's. So another piece of, of what some of what CWD does is also like patient advocacy. So yesterday he was on zooms all day. A bunch of different legislators from Ohio, because that's where we're from. I'm talking about a couple of different bills that are, you know, looking at expanding coverage of behavioral therapies of educational therapies for Medicare which doesn't sound like, you know, I mean, you guys have kids, but, but the thing is, is when you get Medicare to cover something, a lot of the other insurances will cover it. So, you know, all still with the goal in mind of helping, you know, everyone with. Thrive. And they've, and he does, he does a lot where we've been working on getting him to delegate and he's done a really good job, but there's just still a lot that you know, for 20 something years, it was just him and Laura doing everything. And so now we actually have. We have five official full-time staff, including myself. We have a director of develop or of advancement. His name is Matt point and he is fabulous. His husband has type one and he had worked in higher ed before he came to work with us. He had also worked for a different diabetes, nonprofit and then we also just got a. I guess, I don't know what her title is. Director of design. I think her name is Sasha. She and I met in Cincinnati and she also has lived with type one. She had worked for a different diabetes, nonprofit as well and is a graphic designer. So she has been helping make our website look modern and fun and inclusive. And it's been. It's been a real joy, you know, as I said, I've I learned early on that sometimes just by existing, around other people with diabetes, like Lee was mentioning sometimes just being like the older person with diabetes that, you know, and I, I did have a successful pregnancy, not without challenge of course, but you know, sometimes that is just, I'm not a good pregnant person diabetes aside and, you know, just, just being an adult with type one, And being able to show, you know, other people that you can do, whatever you want to do in life is, is just really a joy. And I really, I really enjoy you know, being able to give my wisdom and, and help, help uplift other people with diabetes.

Katie: 37:01

Yeah. no, I think it's great. Especially for moms that are, or not just moms, parents, or grandparents or anybody that has a loved one with type one, just to be able to see those that have gone before them. Cause there's. Millions, I guess I'm going to go ahead and say millions, thousands. I don't know of people that have, and just to see that and see that they've made it and they're successful and, and it's very gives us a lot of hope. Definitely. So we appreciate that. Lee, I want to know what your favorite conference experience has been thus far. I know you have a lot, but what's your favorite conference?

Leigh: 37:40

There's a lot of them.

Katie: 37:41

know, take your time. Marissa, do you have one? We can.

Marissa: 37:45

You know, so growing up with CWD, it was most helpful to learn from the diabetes educators that had type one, because they told us things that our doctors and nurses wouldn't tell us. They told us about drinking. They told us about being careful with contraception. They told us about. How they messed up and how they survived it. And I honestly don't think I would be here without all of that advice. And the other thing is also talking about how, you know, we all, like no one has perfect blood sugars. I think this is something that people really struggle with. And I think for a long time the way that things out. Was that, you know, you're looking for this goal and it's still right. We still have our goals. Right. But seeing someone's Dexcom data with all the ups and downs and knowing that they are okay, and that they're healthy is something that you, you can't, you can't get that from anyone unless you see their, their Dexcom graph. Unless someone's willing to say, Hey, look like I screw up sometimes and guess what? I'm okay. Because. When you go to the doctor and they're like looking at your printouts or, you know, back when I was young, we had to do logs and I even had to do logs on my pregnancy. It was awful. But they would circle like with a red pen, all these numbers that you, and you're like, listen, like, I'd like to see you try to do this every day and get it in between that range. And, and that's something that, you know, again, you only get from other people with diabetes. And I think that's where. Where camps and friends for life really hugely beneficial for people. And I think, you know, on a personal side, one of my favorite one of my favorite experiences at friends for life was when my son was about, I don't know, 18 months old. And you know, my dad would give these talks on the stage at the banquet and. He always talks about how happy and grateful he is that you know, that I am healthy, right. And to have my son as a little toddler run up on stage to hug his grandpa and something that would be so normal to people without diabetes, but to have been able to go through a successful pregnancy with a healthy kid is huge. And it's something that many people in my generation, you know, we were afraid, we were very scared. We were always told about all the bad things that could happen. And we weren't told about the success stories.

Katie: 40:34

Yeah, that's great. Hmm. That just gave me goosebumps. It's

Marissa: 40:38

No.

Katie: 40:38

visual of your son running up. Let's sweep.

Leigh: 40:41

So I think for mine, I think that friends for life makes you brave. It makes the parents brave. It makes the kids brave. And so one of my. Is that we had a terrible time with infusion sites, kinking you know, one little bin will ruin, ruin everything. It will ruin your day. It will, we have one that sends us into DKA. It will just ruin everything. And it's one of those things to where you don't visit with your endo, that all. And they don't see your daily struggles, your weekly struggles. And so we had been sort of struggling in silence with these kinked cannolis over and over again. And so had an opportunity at one of the regional conferences. I was just sort of lamenting basically to the walls or anyone who would listen about these ongoing struggles that we were here. And of our friends for life said, you know, would you consider using a steel set? And I was like, no way, we will not use a steel set because that is nettle. And my child is too skinny and she's too much of a girl and she will not do it. And that is metal. And I cannot do that to her. You know, I need to have an auto-injector or we need to make this fast. You know, again, when she was diagnosed at three, we literally had to lay on top of her, you know, my six foot 300 pound husband, and I would lay on top of a three-year-old to change her side. So this was someone suggesting to me that I'm going to do a manual insertion with a steel infusion set into my child who at this point was probably six or seven. And they sort of talked me off the ledge and said, what if the solved your problems? they said, you know, what, if this could do it, you know, what if this made your life better as a diabetes mom, what if this made her feel better? And so there was a challenge to me, you know, you could be brave. And what if we taught you how to do this? Because, you know, she was so small, she independently could

Katie: 42:44

Yeah.

Leigh: 42:44

her sight. And so it was a challenge for both of us to be brave. And so we did it, and of course I didn't do it at first, but you know, my friend her underneath of a stairwell and I have a picture of it, you know, to this day. he did it for her and her little friends that were in her age group, you know, joined around her and sort of like built her up and they did this steel infusion set and we've never gone. Never, know, and we have not had

Katie: 43:13

Okay.

Leigh: 43:13

canyon one since then. And so like, that is one of my best memories that, that one moment that someone said, be brave, you know, you don't have to let this diabetes the way that you're doing it ruin you. know, it sucks and it's hard, but there are other options out there. Other options that our doctor didn't even tell us about. But you know, because of the community at friends for life and because these people cared enough about me to say doesn't have to be so hard, let's try it another way. And I'm going to be here by your side to help you through this. We took that chance and then our lives have been so much better because of that. So. That is one that really made a difference for me. It made a difference for my child. She was brave and let that happen. And then, like I said, we've never gone back to the plastic ones again. So that one was pretty life-changing. And then for pot, like funny ones, like the banquet that Marissa just talked about, you know, where her son runs up on the stage with Jeff, you know, those are great. And I always love like trying to see what I can force my family to dress up. Cause there's usually a theme. So you'd like dress like your favorite Disney character or, you know, like just different themes. And like, I normally forced them into some outfit that no one wants to wear not normally fit them the way that they want it to fit. those always make me laugh. So like I can go back and sort of chuckle and look back at the pictures of things that I have had them squeeze themselves into, you know, just for a dinner.

Katie: 44:40

it.

Leigh: 44:41

those definitely make me

Katie: 44:42

Yeah.

Leigh: 44:42

Yeah. Our time together.

Katie: 44:45

I love a good theme. That that's exciting. I, this is the first year. Well, not the first year, but for like three years in a row, I talked to my family into themed Halloween costumes, but this year they're, they're wanting to go their separate ways, which I'm very sad about, but I love that. You are not the first person on the podcast to talk about those steel cannolis. I had another guest on whose daughter. Went into DKA because of a king Kanyola and they like, it terrified them so bad that they decided to get off the pump and go back on to MDI. And, and then I don't even remember who it was, maybe one of the educators or somebody she knew was like, oh, well you should have tried the steel Kanela's. And she's like, well, nobody told me about these. Nobody told me I had options. Like they just, I guess, gave me the one they prescribed me. So, anyway, I'm just saying it again for anybody that's on a pump, I guess that's not Omnipod the steel cannula infusion set look into it because I've heard from a couple of people now that it's a lifesaver. So

Marissa: 45:43

Yeah, that's all that I use during pregnancy too, because he can't risk. You know, I'm not going to have a 250 blood sugar making my baby bigger, not for missed an infusion set. And that's one of the reasons, one of the sessions that we're doing at the fall conference on the Saturday, November. Is all about how to get insulin into the body, because I don't, you know, it's these little things that, you know, to the providers, maybe it doesn't seem like a huge deal, but when you're the person living with diabetes, you have to find what works for you. And it's not a one size fits all. So.

Katie: 46:16

Yes. Sorry. I just had a random thought about as a parent of a type one. It's that can be hard sometimes because. I there's a couple of things that I would like for my daughter that she's 100% opposed to, and I'm like, okay, I'm not the diabetic. Like what works best for you? It's your body, you know, all that stuff. But that can be a challenge for sure.

Marissa: 46:36

I was just gonna say that positive peer pressure of friends for life is humongous. And that's one of the things is doing different infusion sets, even checking blood sugars. When people didn't want to check their blood sugars, wearing a sensor in a certain spot, these are all things that you can enlist their peers or their youth leaders at friends for life to help you get accomplished.

Katie: 46:55

Mm, I like it. I'm already got a list going in my head of things that I need people to politely peer pressure my daughter into that's a topic for another day, I guess. Real quick, the website I've already mentioned is beautiful. Sasha, did you say her name is the design? Like,

Marissa: 47:10

Yeah. She's been working on the newer designs.

Katie: 47:12

Yeah. it looks great. But it has, you know, it just has so many great resources. Like it has a tab on there that's like, are you new to diabetes? And then it has several articles available about just kind of like T one D basics if you're just starting out. And then I stumbled upon the tab that for diabetes. That you can click on your state. And it has a list of all the different diabetes camps in the states, which I thought was, was fabulous. So any other thing that you that's on the website that you feel like would be a great resource for the listeners to know about today?

Marissa: 47:46

Yeah. So there's a, there's a tab with all of our community events that has the friends for life conferences, the regionals, the ones in Orlando, the screen side chats. We also do these masterpiece product theaters, which are from, you know, new new devices or new medications. We've done some for like maximi. We've done some for this thing called Nutri. Like a low-glycemic index snack. And there's also a section where you can catch up on like the latest research. And we also have a newsletter. It goes out every Wednesday. And you know, in this newsletter, we, what we do is we use. What is what's trending in social media. First of all, we put some of those in there. What you know, what's in the news about diabetes and then what, what research is important that that you should know about as a family living with diabetes. And you can see. For that newsletter on the website. And you can also do a you can submit a question. So we have you know, a team called the D team diabetes team where we, we basically can outsource to a psychologist to an undercurrent. To a kidney doctor if we need it. And what we can do, what you can do is submit any type of question that you know, maybe you don't want to ask your doctor, you don't feel comfortable asking, and you can get a response that is, you know, medically and scientifically backed. Which I think is really helpful. And it was used a lot more you know, back in the, the early internet days, but we know we're getting, we get a lot of questions and a lot of them now are coming from overseas where people don't have as, as easy access to healthcare professionals. So but I think it is helpful. You can ask questions that maybe you're embarrassed to ask.

Katie: 49:27

Yeah, absolutely. Well, thank you guys so much for coming on today. You've gotten real, you've gotten me really excited about the conferences and I'm gonna go sign up for the newsletter too, when we get off the call, but it's just been great chatting with you. I've loved having the perspective of somebody who. Grown up with diabetes, who, who now, you know, works for CWD you know, and then from the perspective of a mom who's been involved for the past nine years, very heavily. And it's just been great to, to hear about it. And I think this will definitely help the listeners a lot, a great resource for everybody.

Marissa: 50:00

Yeah, thank you so much for having us.

Katie: 50:02

Oh, you're so welcome. Is there anything else you guys want to add before we sign?

Leigh: 50:08

Thanks for having us. It was great to meet you.

Katie: 50:10

Yeah, you're very welcome. We all have a fabulous day.

Marissa: 50:14

Thank you,

Katie: 50:15

You're welcome. Bye. All right. That's a wrap on today's episode, Marissa and Lee. Thank you so much for coming on again and telling the listeners all about CWD and the friends for life conferences. Am I right? Was I wrong? You want to go to the conference now? Don't you? I definitely do. I will leave a link in the show notes to the CWD website and how you can follow them on social media. I also want to tell you that if you want to support them financially, And you buy things on Amazon regularly, which let's be honest. Most of us do. You can sign up for the Amazon smile program where Amazon will donate a percentage of your purchases to the charity of your choice. You can choose children with diabetes as your charity. Actually, I just signed up for this yesterday and it's actually not listed as children with diabetes on the Amazon smile website. It is listed as T dash one. Ink that is their official corporate name T dash one today, Inc. I will leave a link in the show notes that will take you directly to the Amazon smile webpage, where you can, where you can designate them as your charity of choice. And from that point on, if you are shopping through the Amazon smile page, which is the same exact thing as regular Amazon, you just have to designate the Amazon smile page. A percentage of your purchases will go directly. CWD how awesome is that? And absolutely no cost to you. You know, you're going to be buying things on Amazon, this Christmas for people in your household and for yourself. So you might as well do something good for the type one community and sign up for the Amazon smile program. All right, you guys have a fabulous week.