2019 Mended Little Hearts Symposium and Leadership Summit with Jodi Smith!

Mended Little Hearts National Program Director Jodi Smith joins Anna in this episode to discuss the upcoming 2019 Mended Little Hearts Symposium and Leadership Summit in Milwaukee, Wisconsin. The Leadership Summit will occur on July 12th and the Symposium will occur on July 13th. You can register for the event here: https://mendedhearts.org/chd-symposium/

In this episode, Jodi tells Anna about how the Keynote Speaker was selected, why people should attend the Leadership Summit and Symposium and what benefits they can derive from attending. She details what it has been like for her as a parent of a child with a heart defect and how others can not only help themselves but help others, too, by being part of this organization.

With professional training from Parent-to-Parent of Wisconsin and Ex Fabula, the Leadership Summit will be a must-attend event for those who wish to promote congenital heart defect awareness. The symposium will feature speakers and panel discussions sure to assist parents and Heart Warriors alike.

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Transcript

spk_1:   0:00
when Joshua's first ideas. I think back to being a new parent of a child with C H. D. And I remember at that time just how utterly terrifying it Waas

spk_3:   0:15
Welcome to heart to heart with Anna I'm Anna Gorski and the host of your programs. We're so happy to have you here today. I'm excited to announce a new contest that will be conducting for this summer of 2019. We want to hear your stories. We want to know how an episode of heart to heart with Anna has impacted your life. Share your 500 to 2000 words story with us. We'll post them on our website, and we'll let people vote for the story that touches them the most. The first place winner will get a heart to heart with an a shirt at their choice. The second place winner will get a heart to heart with an a tote bag, and the third place winner will get a heart to heart with Anna Mug. See hearts. Unite the globe dot org's for more information. I'm very excited about today's show to feature a special heart Mom. Today's show is entitled 2019 Mended Little Hearts Symposium and Leadership Summit with Jody Smith. Judy Smith is mother to 15 year old Joshua, who was born with a critical congenital heart defect, or C. C H

spk_0:   1:13
D. And she's also Mother Toe Heart Healthy sends Nick, who's 21 Jake, who is 23. Fortunately, Joshua was diagnosed before birth, enabling him to receive life saving surgery immediately after birth. He struggled for the 1st 2 months of life and subsequently underwent two more open heart surgeries. Today, he is a happy, healthy teen who loves sports. His family and life as Joshua's defect would be 100% fatal if not detected. Jody credits her son's survival in good health, toe early screening for C. C H D and is now an advocate for Pull Sucks Symmetry screening, a simple, noninvasive and inexpensive test performed in the 1st 24 hours off life. Jody is a lawyer and the national program director for Amended Little Hearts, with whom she has campaigned tirelessly with fellow advocates to make pulse ox symmetry screening mandatory throughout the United States. She is also a former guest of heart to heart with their DNA. She came on the program to talk to us about advocacy in our debut season. Welcome back to heart to heart with Anna Jody. Anna,

spk_1:   2:22
thank you so much for having me on your show again. And for all you do for families everywhere, it's a real honor.

spk_0:   2:28
Oh, well, I feel the same way about you. I'm so impressed with everything you've done with mended little hearts. And I want us to start by talking about that. Don't you tell us about what kind of service is we're available to you and your family when your son was young and then we're going to get into the service. Is that meant it. Little hearts provides now.

spk_1:   2:49
Well, Anna, the reason I got involved with mental little hearts was actually due to the lack of support. And resource is in 2003 Joshua was diagnosed at a routine 20 week ultrasound, and after that, I went online to learn as much as I could about his condition and about what to expect. You got to remember that that was 2003. Well before Facebook and Beam or the widespread use of what I call Dr Google, right? And what I have found out Waas that the information out there was often incorrect and it actually terrified me. At that time, many little hearts didn't even exist. There was online group that it was part of, and I really enjoyed being part of that. But I was also desperate to meet people in person who had gone through. What I was about to go through or whose Children had the same defect is Joshua. I really wanted to get my eyeballs on it, child, with Joshua's same defect and see what? What does this look like? What is it gonna be like? Remember the time I called many organizations? I called American Heart Association and mended hearts, But I was unable to find any support groups in my area in return, Virginia. So I actually started as a volunteer and started the ninth Met a little hearts chapter in the nation. So no one would have to go through that same experience. I just wanted people thio. No, they had people to connect with and have the information they needed. And in fact, I remember it like it was yesterday, the first time a mom who was pregnant with a child who would have the same surgery is a different defect. But same surgeries as Joshua had came to one of our support group meetings and she asked, Which child was mine? And I remember pointing to the toddler running circles around the room, and I watched her face at burst. I saw the surprise on her face, and then I watched the stress intention. Leave her and she smiled. That's when I know that I was doing the right thing. And that memory actually keeps me going even today.

spk_0:   4:49
Oh, I just love that story that ISS So also, I felt exactly like you did Jodi. When Alex was little, we did not find out in utero. But after we found out and they encouraged us to just do compassionate care and I said that wasn't an option, So they went to hurt it and operated on him. We were really blessed because at the same time that he was in there being operated on with his Norwood, there was a little boy who was two years old, who is in there for Hiss Fontane. Wow. Yeah, and Joshua is oddly, a deficit with Joshua. Joshua was my inspiration and a B was my support group at first, and and there was another mom in there whose baby was younger than mine. Patsy and her baby Kristina. I mean, we became each other's support group. It was a little fledgling group Richer, right? There's nothing like having a riel mom right there that you can talk to you that you can give a hug to. And seeing those kids makes a huge difference.

spk_1:   5:51
There really isn't. Well, what do the

spk_0:   5:53
things that has really impressed May has been the CHD symposium. That meant a little hearts puts on. So tell me a little bit about why they started this symposium and what kind of service is are available to people who are interested in perhaps attending it?

spk_1:   6:08
Sure. Well mended Little heart started the CHD symposium in 2014 and we started it really, for the reason we start everything we create because people need it. We liken this to many of the other things we do like, for example, when people needed a resource guide to help them on their CHD journey. We put together the Medical Heart guide, which came out in 2015. We noticed families with Children in the hospital needed support and toiletry items actually also in the hospital, and we put together the bravery bag program and rock. Your scar was created when we realized how ashamed teams were of their scars, and we wanted them to feel better about themselves and empowered. And it has been very successful in that. So with a symposium. What happened was I was hearing from Maur and more parents who felt like they didn't have enough information to make decisions about their child's care. In 2014 people were sharing a lot more information, not as even as much as today, but they were starting to share information about Well, this is what my doctor said or this is what my child's center is saying to do next. And they felt like, Wow, I didn't even know that was available and I don't understand what the difference is. So we decided that they really needed more information about what's going on. They also felt like there was nothing new, and I remember feeling this way to toe help our kids live longer and stay healthier. I thought for a while I thought, Well, what is really being done. But because I had the national picture is the national program director. I didn't know there were things that were happening that people just didn't realize We're out there and mainly we just wanted to give people hope. So, like I said, we started the first imposing than 2014 in Indianapolis just to see if it would be successful and people would find it helpful and we didn't have enough space and we didn't have enough handouts. So it was very successful in the it overfilled, and I felt like, really, that's a good problem. To have you have a seat back from that was just amazing people. The biggest question was, where and when is the next one? Oh my God, yeah, that well, awesome. I know, I know. So we knew we had to keep going with it. So every year we've had one and some years it's hard to put together and it can be really expensive. So we have struggled with that some years. But this year we were really excited because Children's Hospital Wisconsin offered to host it, and this has allowed us, first of all to have this symposium in the first place, but also to keep the costs really low for families. And they have been amazing to work with. So the individual cost is $55 that includes two lunches and one dinner.

spk_0:   8:58
I know that So amazing. I know, right? Yes, that is amazing. I couldn't believe it when I saw the cost this year. And I'm so excited that I can go. And I think a lot of people are going to be able to afford to go because it is so reasonable. Although it's in an unusual area. Last year you had it. San Antonio it since I left Texas that was really convenient for being a fit this year was cuts in. Okay, I haven't been to Wisconsin for a long time, so it's a good excuse to get up there.

spk_1:   9:30
It will be. And we're so glad, Anna that you are you're failing to mention, but that you are very famous emcee of the symposium. So we're also very, very grateful that you will be there. But we failed that the model we had it with Texas Children's two years ago down in Houston, and that model is just really a good model because working with the hospital allows us to provide more. Service is to the families that symposium, for example, Texas Children's did a tour.

spk_0:   10:02
I went to the one in Houston to see I got spoiled because the two conferences that I went to, we're both in Texas. I got lucky that way. But yes, the tour was really fascinating. So, yeah, I hope they do that and was constitute. It's interesting to go to other hospitals to see what they're doing, and especially if they have research that's going on.

spk_1:   10:23
Yes, absolutely. Also, the other cool thing about this year is people actually came to me wanting to present, and that made me really excited because I thought, Well, obviously people see the symposium is something that's of value and very positive. It's not just two parents and families, but we have medical professionals who come to it as well. And I've even had a couple social workers ask this year if they could attend it like Oh my gosh, yes, wonderful.

spk_0:   10:54
Oh, my goodness. That's wonderful. Yeah, So after people hear about this on the podcast, Jody, I know they're going to want to come back I already know some people who want to come who live in Israel and other countries, and they can't do it financially, even though it's only $55 to attend. The transportation for them to get here is just prohibitive. Will you have some sessions online? Will there be a way that people who are in other countries can still be part of it?

spk_1:   11:20
And that this is something we wrestle with every year, whether we provide the information online and if we d'oh, how does that impact attendant set Symposium? And each year we've decided that our main goal is really to get this information out there to as many people as possible. So we do provide videos. And for the last two years it's been Facebook live. We just feel like it's the right thing to Dio. We still get a large in person attendants, and if people come, they get to do the networking and fun that we can offer on video. But one of our biggest challenges with video is the cost of the video. It's a very, very expensive as you probably know, to videotape an event also for Facebook. Live video quality depends on WiFi, which can be spotty. So even though we've had these issues last year had over 20,000 views of the symposium videos, and I think live views were between 512 100 people. So is so we do plan to offer it. That's great

spk_4:   12:20
hot industry. We're offering us a mechanical hot. And he said, not a day that I've had enough to give it to someone worthy. My father promised me. A golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_5:   12:41
Heart to heart With Michael Please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments

spk_3:   12:56
tonight forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects join music home tonight forever. Just before the break, we were talking about the CHD symposium and I'm

spk_0:   13:37
really excited to attend this year. But I'm even more excited because you're doing something completely different. You have a leadership summit that is going to be part of this symposium. Can you talk to us about the leadership summit?

spk_1:   13:51
Sure. And, uh, you and I have been talking about this for years and wanting to bring the CHD community together. For some reason, it's been really hard getting the CHD community together like they seem to be for autism and cystic fibrosis. We have talked about the need to collaborate and not compete in the need to join our voices. And we haven't really been able to do it up to this point. So this year, when we were looking to add some leadership training to the C H D symposium like we often do, we thought, Why don't we open this up to everyone? We felt like if all boats rise, CHD has a bigger voice.

spk_0:   14:26
Exactly. I mean, this is something you and I have been talking about for years, Michelle runs Maki and I have touched about it for about two decades, which is amazing. I mean, the need has always been there for us to be more united. And this is something that I really hope anybody who is a leader if you have a non profit organization, or even if you don't have your 501 c three But you're a service organization. I have strongly strongly encourage you to come to this leadership summit because this will be a chance for us to network and to learn and grow with one another and to share with each other. I just think it's gonna be fabulous. Yeah, me too. And you even have some help from the Children's Hospital Wisconsin with the summit, don't you? Yeah,

spk_1:   15:14
it's really thanks to them. We've been able to provide the CHD summit as part of the CIA G symposium. When we went to them and talked about bringing the CHD community together, they said yes, absolutely. We're gonna provide the space and even host the lunch for that. So we were able to add it on on July 12 the Friday before the symposium piece of it

spk_0:   15:38
right? Can you tell us what kind of training is actually going to occur in the leadership summit?

spk_1:   15:44
Sure. So in addition to networking and sharing during the lunchtime, we also are really excited to have been able to get professional training on how to give support by parent to parent of Wisconsin and training on how to tell your story by Ex Fabulous, both our companies that have expertise and our ability to train on these issues. For the leadership summit, we thought about what kind of training could make the biggest impact and be most helpful to CHD leaders. And we decided that supporting each other and telling our stories were the two things that could make the biggest difference.

spk_0:   16:23
Yeah, I agree. 100%. I think this is going to be fabulous. It is interesting that you're working with parent to parent because I had already signed up for the Texas parent, a parent conference which happens to be in San Antonio this year in July, and it is an excellent organization. I think we could learn a lot in the CHD community by the model that parent a parent provides. I

spk_1:   16:48
agree. Absolutely, they seem to be able to really train on things like empathy on grief, that stages of grief, that families go through on listening skills, all the things that people really need to support each other.

spk_0:   17:05
Yeah, and for those of you who don't know about parent to parent, it is a national organization. And they service families who have Children with all kinds of congenital problems, not just congenital but also acquired problems. Neurological problems, autism, deaf and hard of hearing visually impaired. I mean, you name it just about, and they help those families as well as families who have Children with medical challenges. So their focus is actually much broader than what our focus is

spk_1:   17:41
right. And I think that that will allow them to speak from a variety of experiences because C. H. D is so complex and often involves many other issues. So I'm really excited that they are able to have a broader understanding of giving support from one parent to another,

spk_0:   18:02
right? Right. I hope that this is going to be the beginning of us holding hands with parent to parent, holding hands with one another. Hug is definitely very excited. Thio take part in helping minted little hearts. And we've had a very nice given take. I've worked with Michelle, Run Tamaki of Kids with Hartford. Like I said two decades and you get so much more when you were together. This some really is greater than the parts.

spk_1:   18:29
We totally agree. And we hope that people who come to the symposium and especially the leadership summit will take away the idea that we're much stronger when we work together, that we can collaborate rather than compete. We also hope that they are going to be able to use what they learn to improve their own CHD organization and be more powerful when telling about what they dio and have better listening skills and better understanding of what families are experiencing so they can provide support to those families. But the biggest piece of the leadership summit is about bringing people together. It's about the collaboration. It's about the strength in combining our voices. I just love that.

spk_4:   19:20
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spk_5:   19:55
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spk_2:   20:35
You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with them.

spk_0:   20:54
Jerry, before the break, we were talking about the leadership summit and about the CHD symposium. Now, I want you to tell me about the keynote speaker that you have for the symposium.

spk_1:   21:05
Well, we're really excited about this keynote speaker. I have never personally met Nevin Kamar, but he is one of the most positive and upbeat people that I know. I follow him on Facebook and he always inspires me. Like really bad things have happened to him. One year they had a robbery right before Christmas and he just stayed a B. And I thought, How the

spk_0:   21:28
heck did you

spk_1:   21:28
do that? I would not feel the same way if that had happened to me. I find that he always has gratitude in every situation. So when we were trying to decide on a keynote speaker, he came to my mind. He is a world champion table tennis player and is even been in a Hollywood movie. Oh, really? Yeah, he was a vice officer. I believe in a Hollywood movie. So we have a famous person going to speak. That's so cool. Yeah, but He also has CHD, an early onset Parkinson's disease. Wow. Yeah, he is having a surgery this month, like in a couple of biggies. So we're hoping that he recovers quickly from that. I'm sure he will. And he'll be ready to go in July.

spk_0:   22:18
Oh, my goodness. So he's having CHD surgery? Yes, for a fib, I believe. An ablation. Mmm. Wow. Well, hopefully with an immolation, that will be an un remarkable recovery for him. How did you find him on Facebook? That's

spk_5:   22:35
a

spk_1:   22:35
good question. Are Philadelphia mended? Little hearts Group had heard of him, and I don't even know if he came and spoke to them. But they had heard him speak somewhere, and they found him to be really inspirational. So when I was looking for keynote speakers, they said, Hey, have you ever heard of Nevin Kumar? And I hope I'm not pronouncing his name incorrectly also, and I hadn't, so I found him on Facebook. I listened to something he did, and I just followed him on Facebook, and he and I chatted back and forth and then he introduced himself to me actually and said if we ever wanted to speaker, he'd be glad to do it. Wow. Yeah, It was really cute when we asked him to speak because he was so tickled. And he wrote up this whole thing on Facebook and I read it and it made me start crying because he was just so honored and tickled. He has never met another adult with CHD. What? Yes. How old is he? I think he's in his forties. And my gosh, you're getting Wow. Yes. So that's what he's most excited about at the symposium is meeting other adults with CHD. So if you're an adult with the HD, come to symposia.

spk_0:   23:53
Yes, yes. Oh my gosh, that is amazing. And especially that he's lived this long with a major problem that he has never met anyone else who has that same problem. I agree he

spk_1:   24:07
probably has and just doesn't even thing

spk_0:   24:10
is that there are so many people walk around like him. Most people would probably look at him and not realize that he has a heart defect. Absolutely. Wow. Well, let's talk about the new parents that we hope will come to the symposium. Why would coming to Houston Posey and be good for new parents when

spk_1:   24:27
I think about when Joshua was first ideas, I think back to being a new parent of a child with C H. D. And I remember at that time just how utterly terrifying it. Waas and I also remember being in desperate search of information that would help me and help him. I really just wanted to find information that would help him survive. Yes, so, you know, having been through this journey even before I went through it, how much parents look for anything that will give them a little hope. So I hope that the parents that come to this first of all, we'll find some hope that they realize that there are many promising new treatments and options for Children born today that weren't even available a year ago or two years ago. And I know that the innovations that are presented at the C H D symposium are really exciting and making a huge difference in the lives of Children and their families. Every year I obviously attend, sometimes run this symposium right, But every single year I learn new things and I think because I've been in this so long that I know it all, And I don't I don't Jeff. So I hope they'll be able to also connect with others going through the same journey. So they really understand they're not alone. I feel like a lot of people don't realize. Have many people out there are thinking and feeling the exact same thing they are, and they don't have to be ashamed of it, right? Right. They can just connect with these families there. And the other thing that's important. And you know how I feel about this is I hope they have fun.

spk_0:   26:15
That's a big part, Boy. If you have never been to the CHD symposium, y'all are missing out because thes people do know how to have fun. We d'oh when you take Rangers, there's music, There's good food. There is a lot of hugs and yeah, it's it is really a good time. It's not the same. Is connecting on Facebook. It's not the same. Or, you know, we old timers connected in Aaah! Well, chats Yeah, Yeah, there were Yahoo groups and yeah, yeah, who chats? And that is wonderful when you have nothing. Believe me, just having somebody who understands is really awesome. But we have really evolved over the last two decades to have gone from these AWOL chats to the Yahoo groups and the list Serves and Mona Bar Miche helped to start the health information at Work and Neighbors Petey Heart. But what we do at Symposium it is so different because it's hard for us to access medical journals, although even that's easier now, thanks to the Internet than it used to be. But it's hard to actually make sense out of all of the information is going out. The information on research that's going out nowadays is just exponential compared to what it used to be. Yeah, absolutely. Most of us are not doctors, Mr Vester, not nurses. And so the language that they speak, you know, we understand more than the average person, probably, but it's still difficult. Thio understand all of the implications of the research that's being done. But you bring doctors that we can actually ask questions. Stuff. Yes, it's funny because one of my biggest

spk_1:   27:58
requirements for anyone coming to speak, I always say, How good are they? A talking to parents, the big guns? That's what I want to know right? You can be extremely knowledgeable in your field. But if you're not good at putting that knowledge into a way that parents can understand it, honestly, I think you can go speak it every medical conference you want. But I want different people for the symposium because I want people to be able to understand what's being said. Also, another really key part and often the most famous and most watch piece of CHD symposium is actually the CHD. According to me panel. That was actually Jennifer Paige, the mini Darth Vader Max, his mom's brainchild, and she moderated the 1st 1 we ever had. But this panel takes a topic this year. It's growing with CHD, and we have a panel of people from all different perspectives. And it's really cute this year because we have a medical professional who's also an adult with CHD coming from New York. And then we have an elementary school child with C H D. A Team CHD, a young adult with C H D and a new adult with CHD, who's also a mom, and they're allowed to be talking from their unique perspectives, so that will be very exciting.

spk_0:   29:17
Yeah, that'll be great. Well, now I'm sure everybody wants to register. So tell us how they can register for the leadership summit and this. Suppose iam Yes,

spk_1:   29:26
so they can register by going to www dot mended little hearts dot or GE and down on the left hand side they'll see a CH D symposium graphic. And if you click on that, you have all the information you need to get registered.

spk_0:   29:40
It's a really cute little graphic this year. Talk to us about the logo that you came up with for the symposium this year because I love it. So

spk_1:   29:48
it actually wasn't me who came up with that, and it went through many iterations. The first person who came up with the idea with the Heart with a sprout was a leader in the mental little hearts of D. C group who came up with a heart and a sprout. And then we had a company out in Phoenix, Arizona, who does a lot of graphics and professional design, and they're amazing, and they came up with the final design that you see today, which I really love.

spk_0:   30:16
I love it. It's so pretty and it's perfect because it looks like it's blooming. And that's what men did. Little Hearts Symposium is doing its blooming. It's blossoming, it's growing bigger, and it's helping everybody else to grow. So that's what I thought was a lot. It's amazing. Well, thank you so much for coming on the program today, Jodi. And for talking to us about this upcoming event. Anna,

spk_1:   30:41
thank you so much for having me. And I'm really excited again that you're coming to emcee the event. And I'm so thankful for all you D'oh! I know you're gonna add a lot to the experience for all of the people who attend symposium, and I'm really looking forward to seeing you there.

spk_0:   30:57
Oh, I am, too. And it's gonna be so much fun. You're not gonna want to miss it, folks. You're going to want to be in Milwaukee was again. The dates are July 12th in July 13th.

spk_1:   31:06
We're glad to have people come just to the summit or just to the symposium. Though

spk_0:   31:10
$55 for just one day is still a bargain for everything. Is there going to be receiving? So I hope to see all of you there that does conclude this episode of Hart Tart with Anna. Thanks for listening today, my friends. Find out, son. I heart radio and subscribe. And remember, my friends, you are not alone.

spk_2:   31:28
Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community Heart to heart with Anna with your host and Dworsky can be heard every Tuesday at 12. Noon eastern time.