Hazel's Wisdom: Living Boldly with CMT

Elizabeth Ouellette: 0:00

Did you guys buy some sort of like back thing that he's looking just go in? You can bring all around on your back. You both need one of those. Oh, yeah,

Christina: 0:09

we have we don't have one of those where you need

Elizabeth Ouellette: 0:11

one wheelchair? No, I would make your parents carry you on there. Yeah,

Chris Ouellette: 0:15

totally get an adult BabyBjorn

Hazel: 0:21

to use my arms, so like wheelchairs are fun for me because I Okay, sure. So my arms and mine have like lights on the bottoms of the wheel.

Elizabeth Ouellette: 0:32

Let's see now you have fancy stuff going on there

Chris Ouellette: 0:40

hello, everyone. This is Chris and Lizzo

Elizabeth Ouellette: 0:43

we are a brother sister team.

Chris Ouellette: 0:45

And on behalf of the Charcot Marie Tooth sociation, aka CMTA we're, I'm in that chat.

Elizabeth Ouellette: 0:54

From coast to coast. I live in California and Chris lives in snowy Vermont. That's

Chris Ouellette: 1:00

right, folks. No way Vermont. Where are we listening to Chris? Oh my goodness. He can't really mess this podcast name what Alyssa.

Elizabeth Ouellette: 1:11

CMT for me CMT the number for me.

Chris Ouellette: 1:15

That's right CMT. For me, a community focused podcast dedicated to those with CMT, giving them a voice in the community to share their stories, good or bad successes, challenges and much much more. recce. Yo,

Elizabeth Ouellette: 1:29

today, we are headed to Nashville, Tennessee, the home of country music. Television CMT,

Chris Ouellette: 1:43

CMT WIZO I'm confused. I thought this interview was about the cold iron family with hazel and her family, but it is

Elizabeth Ouellette: 1:51

let me explain. Let me explain CMTS comm for music, television, everybody recognizes that. Okay, and CMT is also Charcot Marie Tooth. Everybody knows country music, but how many people know about Charcot Marie Tooth? Not as many Right exactly.

Chris Ouellette: 2:08

And I get it I get it. Nashville is a happening City. I was there like three months ago. Boy, what a blast. And isn't Alan Jackson, the country singer from CMT? Or got it? How CMT? Isn't he from Nashville? Yes, yes, yes. All right. Well, let's give a shout out to Alan Jackson. And maybe he could be on our podcast. Alan, if you're listening, reach out to us. We'd love to have you on the podcast man. And

Elizabeth Ouellette: 2:32

Hazel would love to meet you. And the cold iron family. They love it. Let me tell you about today's guests. So we've already said the cold iron family. David cold iron is a part of our CMTA board of directors. Right? So we have Christina is very involved in the community. And we have Hazel with us who's almost 11 in November. I'm not sure of the date. But we have Hazel who's almost 11 And she's a superstar. So welcome to CMT from the podcast.

Chris Ouellette: 3:00

Welcome. Thanks. And I actually I was wondering if I saw Hazel when I was in Nashville playing the piano on Broadway. So you ever go down there and play piano? No, no.

Elizabeth Ouellette: 3:12

I saw on the street playing the piano. I'm like, I don't think that was her.

Chris Ouellette: 3:22

Listen, it's so great to have you guys.

Elizabeth Ouellette: 3:25

Hazel. Welcome. So you're almost 11 When's your birthday? November 15. Okay, so almost 11 All right. So what is this story about CMT, in your family? You have CMT, Hazel. And do your parents have it? No. So you have it. How did you find out you had CMT?

Hazel: 3:44

We were at the park with my best friend when I was three years old. And her mom is a physical therapist. And she told us we had to see it. Another PT. Yeah. Physical Therapist. And then that physical therapist said that we needed to see a neurologist. Yeah. Wow. We were like, Why do we have to see all these people about her foot just going a little off center? Because we thought one thing I thought it was just because I just started learning how to walk this just because I was young and starting to walk.

Christina: 4:26

Walking for a while. But because of how she was running, my friend was a suggested seeing a PT. And

Chris Ouellette: 4:33

so how long or what was that timeframe like from seeing the write up until seeing the neurologist? Did that take quite a long time?

Christina: 4:41

It took a couple months, four months, okay. But our pediatrician actually came to us to let us know what she had thought that Hazel had and it was the night that we actually closed on the house that we're in today and it was a project because we were doing a renovation and she came Tarah home and I'll never forget that moment.

Elizabeth Ouellette: 5:03

Well, what did you say?

Chris Ouellette: 5:05

How did you respond? And if you never forgot that moment, you know fell our listeners and a little bit. So

David: 5:10

the rewind a little bit, we we did hear from our PT that we should talk to a neurologist, the neurologist communicated to our pediatrician that she thought it was CMT. And our pediatrician delivered that news. And at that moment, I think Christina and I, we were very confused. We had no history of CMT in the family. And it was a little scary at that time. And Christina and I decided to take a couple of weeks to let it sink in, and to do a little research, and then sort of made a vow to each other to our family that after two weeks of allowing us to cope a little we offensive, and to start figuring out how we can make a difference how we can make sure that Hazel has the best experts in the field as it relates to neurology and surgery, and everything else that is involved with CMT.

Chris Ouellette: 6:04

So you must have frantically been doing research. I mean, I can just imagine, day and night just trying to put all the pieces together. And I also think it's pretty amazing that the pediatrician came up with Hey, she might have CMT, because usually you don't get that it's takes such a long journey to even get that identified. And that's something list though, right? A lot of folks we interview, talk about how long it took to get any type of diagnosis, just because it's such an uncommon. Do

Elizabeth Ouellette: 6:32

you think that's because you have a center of excellence in your backyard that more people know about it? Or was it just chance? Like

David: 6:38

it's possible, but actually, I think it was the neurologists who shared with the pediatrician. He thought it was CMT, and the pediatrician, was a family friend and actually lived around the corner from us. In addition to being Hazel's pediatrician says she was kind enough to come to the house to share that was very generous.

Chris Ouellette: 6:55

And do you know what type of CMT you have Hazel? No, I do. You don't know. Okay, trying

Elizabeth Ouellette: 7:01

to figure that out. Dr. Zucker is trying to figure that out right now. That's

David: 7:05

right doctor is looking at his lab at the University of Miami has been very helpful and very gracious in terms of putting a lot of resources towards trying to find this gene. For us. That's step one, for being able to try to find a solution for Azle. So if we don't know what we're battling, it makes it difficult to find that answer. So

Elizabeth Ouellette: 7:25

during those two weeks that you did a lot of research, what did you come up with? And what was your game plan? Like, tell other parents like what did you do? And what did you think of and where do you go?

Chris Ouellette: 7:35

And I will say, it's pretty cool. You took a two week window and then jumped in. Some people take a year, two years before doing anything. So it says a lot about you guys?

David: 7:45

Well, thank you. I suppose the word started for me was I tried to Google excuse me to look up to see if there were any podcasts that were CMT related. Your Podcast did not exist at that time, wonderful resource, will, who have been dealing with the CMT for a long time, or are new to the community. So thank you for what you're doing. But we also, obviously, we would Google and we found that the CMTA. And, Christina, I think you found something in particular that was pointed out to you,

Christina: 8:16

yes, we were given a lot of materials. And one of the materials was a brochure that included this testimony from a parent whose child had CMT. And I remember reading that in the car, I think we're coming back from Cincinnati after an appointment, because we started traveling to try figure out what to do. And it was written by her Baron. And I remember how much it meant to me to read those words and connect with someone who seemed to be going through the same thing. And then we ended up getting connected with her family by going to see Dr. Davidson in a chop. And we told Dr. Davidson's nurse, please share our information with anyone who would be a good resource for someone who's been through something like what we're going through. And then they gave us the Baron families contact information. And it was just meant to be and they just kept on connecting to CMTA. So

Chris Ouellette: 9:21

great to have resources out there. Yeah, right in whatever format that is. And it's pretty interesting how people get connected right to share stories and experiences and you probably feel a lot better that you can talk to someone. So let's talk to you, Hazel.

Elizabeth Ouellette: 9:35

I was thinking Hazel, now that you heard your parents describe this several now, what was your experience of all this? You remember it and when were you even aware that you had CMT?

Hazel: 9:46

I think that it was like a lawyer the whole time like not before we knew but like after, but I can't really remember it because

Chris Ouellette: 9:59

I guess now out or over the last few years, how do you feel about having CMT? Is it just kind of you don't think about it, you do? What are your thoughts there?

Hazel: 10:10

I don't really think about it that much, you know?

Chris Ouellette: 10:12

And do you wear braces?

Hazel: 10:14

Yes,

Chris Ouellette: 10:15

you do. So I think that's awesome. You don't really think about it too much. Just continue doing what you're doing. You play piano, I heard. All right, pretty active.

David: 10:25

He's been on our basketball team. I think she's awesome. She has a surgery coming up at the end of November. So I think she's going to help coach this year, it'll shine. Hazel has always been a natural leader. And so I think she's gonna do great in that role. But I think the reason why she doesn't think about CMT all day, every day, is she's just a very driven and joyful person. And so she would not let any obstacle get in her way in terms of trying to grow trying to become a better student and a better sister and daughter and friend. So like,

Elizabeth Ouellette: 11:03

if somebody says to you, oh, why do you have braces? Do you get angry? Or do you just explain because a lot of people don't like to wear braces, because it makes them look different? What do you feel about that? If

Hazel: 11:17

someone asked me that, and I've like, told them before, I can get a little annoyed and angry. Because then she'll like, every time I see her, which is like, two or three times a year, she's like, why do you wear braces again? Or like? Nine?

Elizabeth Ouellette: 11:38

Yeah, like how many times I had to tell you,

Chris Ouellette: 11:39

I know, my,

Hazel: 11:42

like a new kid at school or something? I don't get annoyed with them, because like, they would have never known why I

Elizabeth Ouellette: 11:50

do. Sure. And what is your explanation?

Hazel: 11:53

I say I have a disease called Charcot Marie Tooth. It has nothing to do with your teeth. It's just the last names of the people who discovered it. And it affects your hands and feet. So that's why I have to wear braces to walk. Okay.

Elizabeth Ouellette: 12:12

And does anybody ever ask you questions about it? Other than that, once you say that, they're like,

Hazel: 12:17

so you can't walk without them? And like, No, I can't it just it's harder for me to wow. And

Chris Ouellette: 12:24

that's a great answer, by the way.

Hazel: 12:27

For like ever. They think they're always on like, I went to sleep and stuff. But yeah,

Elizabeth Ouellette: 12:33

but you don't? Don't you take them off when you go to bed? Yeah.

Chris Ouellette: 12:41

Do you have do you experience any discomfort or any pain at all? No, not you know, great. Yeah. Good. And like I said, it sounds like you're very active, which is awesome. And you must have a pretty good friend group. Do you have great friends at school? Yeah,

Hazel: 12:55

it's like the last year at this school. And it's harder to get into other middle schools and sixth grade? Sure. A lot of my friends have gone to other schools. touch with them.

Elizabeth Ouellette: 13:07

So it sounds like you and your sister have a pretty good relationship. Yeah, cuz what was the story you told me about playing basketball? So you play basketball? And she plays basketball? But you complement each other in a lot of things. Do you remember what you told me?

Hazel: 13:20

I think it was clear that told you this. Yes. That she's good at shooting hoops, but I'm good at like, dribbling the ball and bringing it down cord and stuff. So like we're good at opposite things. But we play good together. Do something and the other can

Chris Ouellette: 13:40

do it. All right. So it's a great team. And I think she said your incredible passion. I think I remember that. Like passing the ball. Pretty much Stockton to Malone. Yeah. So can you dunk it? No. You can't slam it yet? No, no, hang off the ramp in the

Hazel: 13:56

streets. It's like, it doesn't get that low.

David: 14:01

I think I picked you up before.

Hazel: 14:03

Yeah, but I don't do it on my own. Yeah.

Elizabeth Ouellette: 14:06

I don't either. Even when I played basketball.

Chris Ouellette: 14:09

Yeah, exactly. So Hazel, in terms of CMT? Are there certain things that are disappointing from your perspective? Or maybe do you ever get angry or I don't know if there's any things that frustrate you that you see other kids doing? And just curious if there are and how you address that?

Hazel: 14:27

I can't do the monkey bars.

Chris Ouellette: 14:30

I can't like yeah, those are hard and hold anybody really.

Hazel: 14:34

It's just like, I can't go from bar to bar. And like, I can run but not as best as other people. Like in PE we have to do the Pacer Test, which is like you have to run an a length. Like you have to go back and forth and it goes all the way to like 200 to do it for that amount. You just have to do Get over money that

Chris Ouellette: 15:02

the Yeah, just like the minimum. Yep. I can't do

Hazel: 15:05

it as well as the other people do. Because I'm slower at

Elizabeth Ouellette: 15:10

running. That's okay.

Chris Ouellette: 15:12

So how you look at it like, that's fine. Yeah. And you probably I would not to put words in your mouth but you do you just also think of all the things you can do, right? And there's probably things that you can do that others can't as well. So that's kind of cool.

Hazel: 15:27

I have a unique thing where I can like bend my thumb back around my hand. Oh my god.

Chris Ouellette: 15:38

Very use me listeners. I will be right back to the bathroom here. I'm gonna get ill. I'm getting all sweaty now.

Elizabeth Ouellette: 15:48

That's pretty cool. He's

Chris Ouellette: 15:51

cool, though. Do that again. Actually do that one more time. Do it

Elizabeth Ouellette: 15:54

again. Let's see it.

Chris Ouellette: 15:58

So you wrap. Interesting. Okay, that's awesome.

Hazel: 16:05

Like, where do you pull your thumb back in around? Oh, okay.

Elizabeth Ouellette: 16:11

That is pretty cool. You're pretty flexible. They are those hands. Right? That's probably helps with piano you can stretch things out farther. Or you can. I can

Hazel: 16:19

do it with both hands.

Elizabeth Ouellette: 16:25

But hey, so what are you good at it? Because I think she told me she was really good in math for us, which I'm horrible. Boy, I know. We don't want to bring that subject up. But you are good enough, aren't you? What else?

Chris Ouellette: 16:38

Let me just back up because our daughter or my daughter of her name is Lila. She loves math. So she was finance and math major. She just graduated from college. But I always asked her like, Why do you like math? And she just likes that focus on trying to solve like, there's an answer. And how do you get to that? Is that why you like it? Or?

Hazel: 16:57

I don't know. Yeah, I guess it's because I don't really like the other subjects as

Chris Ouellette: 17:05

like English. And no, I don't like.

Elizabeth Ouellette: 17:08

Yeah, I was never my scientific background.

Chris Ouellette: 17:12

Yeah. And that's I was more science and math as well, but not like literature and history. And you take the subjects, but they weren't my favorite. So what

Elizabeth Ouellette: 17:21

do you think you're going to do in the future? Do you have any idea?

Hazel: 17:25

I mean, I want to be an anesthesiologist. I can't

Elizabeth Ouellette: 17:30

even say that word. an anesthesiologist, why is that? Because

Hazel: 17:40

like, I was really nervous when I had the surgery, my first surgery. So like, I just wanted to be involved with it. I guess. It's like, you know, make me feel better about it. What were

Elizabeth Ouellette: 17:54

you nervous about? Except I know that you're nervous about the surgery anybody would be but what about anesthesiology? Were you nervous about?

Hazel: 18:02

I was nervous about going to sleep? Because I didn't know how I'd feel afterwards. I went to sleep. It wouldn't really be the same when I woke up again, because

Elizabeth Ouellette: 18:14

they put something over your mouth. Yeah. And

Hazel: 18:17

like, you try to last as long as you can. Like when they okay, you're like they have

Elizabeth Ouellette: 18:23

you count backwards from 10? No,

Chris Ouellette: 18:26

but it can be a very intimidating and scary situation. Right? If you've never done that before. Would you find Hazel that if you're an anesthesiologist that you could be in a position to educate the patient and to make them feel at ease? And hopefully not to experience what you did? Yeah.

Hazel: 18:43

And maybe I can educate myself as well to not be as scared of him.

Elizabeth Ouellette: 18:48

That's awesome. You tell somebody's going to have an aesthetic with that mask? What would you tell another kid your age about it? And how to handle that?

Hazel: 18:59

I tell them, it's going to be okay. It's just going to sleep faster than you usually do, which is helpful is you don't want to be away during surgery. Good

Chris Ouellette: 19:10

point. So true. Point, I've had some surgery and definitely did not want to be awake. I have two friends that are anesthesiologist actually. One who was my college roommate. And then another gentleman who my wife and I are friends with their family. And yeah, and they're great. And you know what it sounds just given your background. And as your parents referenced your leadership, right, I could totally see you in that type of role. And it sounds like you've got this inherent kind of giving back to other people. And that's something you could do through that profession, which is really cool that you're thinking that way at the age of 11. That's awesome.

Elizabeth Ouellette: 19:48

So what would you tell somebody else your age about CMT? If they were just diagnosed, what would you say to them about they're like, oh my gosh, I have this CMT, and I'm, what would you say? to them to make them feel at ease.

Hazel: 20:02

I'd say to them, You are the only one who can actually understand yourself. So you have to have a lot of self respect. Because like, yeah, there are tons of other people who have CMT. But it's not all the same. So you have to really voice out what you feel. And you shouldn't be ashamed that you have it. Because if you have it, that doesn't make you different from everyone else, it just makes you more cool.

Chris Ouellette: 20:37

Are you sure you're only 11? To and Nov

Hazel: 20:43

11.

David: 20:45

You're almost alone, right?

Chris Ouellette: 20:48

I think though, that is exceptional feedback that you would give to others. Right? And I'm so glad the way that you expressed that that's on this podcast for our listeners. It's amazing. So very insightful. I mean, what else would could you say really? Write to someone. That's great advice. And

Elizabeth Ouellette: 21:06

another thing, Christina was always great. I said, I brought you on to a lot of doctor's appointments, and we hated it. And we're complaining on the way there and then complaining there. But Christina has a way of bringing hazel to appointments and having fun. You want to talk about that? Christina,

Chris Ouellette: 21:22

having fun? Well, that's great, because she could spend a lot of time at appointments, right? Yeah, and everything else going on in life? Yes,

Christina: 21:28

that's right. Just a routine appointment can last three hours. So we have figured that out over time to just mentally prepare ourselves. That is gonna be a long day. So I tend to bring something to draw with or we listen to Harry Potter sometimes on the we bring books. Can you think of anything else? Oh, snacks? Yeah,

Chris Ouellette: 21:51

to have snacks.

Hazel: 21:53

Snacks when we're in Nashville. Yeah.

Christina: 21:56

Yes, when we're in Nashville, I forget the snacks. But we always have a little fun treat after the

David: 22:01

good. We travel a lot for the appointments. And Christina tries to do a great job, or she does do a great job of making sure that wherever we go to visit, it's more than just a doctor's visit. One of the first thing she does is try to make the hotel or Airbnb feel more like home and a place where we can be comfortable. And relax. And then we go to Philadelphia, Miami, Orlando, and at all this. California. Yeah. It'll

Elizabeth Ouellette: 22:30

be coming to California soon. Tell me about that. Hey, so what's going on here? Near is near my house. What are you doing? In California in November? I'm

Hazel: 22:39

going to have a bone surgery on my feet. November 3, yes. And I like it's going to be a long one. Like it's gonna be very it is both

Chris Ouellette: 22:54

the surgery will be long.

Hazel: 22:55

Yes, I have non weight bearing for like four to six weeks. Okay.

Elizabeth Ouellette: 23:02

So what are they doing? Is it both feet or just one?

Hazel: 23:05

It's both feet at the same time. Okay. Okay.

Elizabeth Ouellette: 23:09

And what's going on? Why do you need the surgery?

Hazel: 23:12

I actually don't know.

David: 23:13

Yes, the way that we describe it in our house, Hazel had surgery, maybe five years ago, that was more of a soft tissue surgery where they moved around some tendons and that sort of thing. And this is going to be more structural. So the recovery is longer, but it's more likely to stick longer. Bone related instead of soft tissue, and her feet are not in a position that allows for her to have very Embraceable feet. So we correct that. Did

Elizabeth Ouellette: 23:43

you guys buy some sort of like back thing that he's looking just go in? You can bring her all around on your back. You both need one of those. Oh, yeah.

Christina: 23:52

We have. We don't have one of those where you need one

Hazel: 23:54

wheelchair? No, I

Elizabeth Ouellette: 23:56

would make your parents carry you on there. Yeah, I totally

Chris Ouellette: 23:59

get an adult BabyBjorn.

Hazel: 24:04

To use my arms, so like wheelchairs are fun for me because I Okay, shift on my arms. And they're like, and mine have like, lights on the bottoms of the wheel. Oh, cool.

Elizabeth Ouellette: 24:17

Let's see now you have fancy stuff going on there. Right.

Chris Ouellette: 24:21

So how do you feel about the surgery? Are you positive about it? You're like, Okay, let's get this done. I'm

Hazel: 24:27

actually kind of nervous. You are?

Elizabeth Ouellette: 24:31

What part of it? Are you nervous about? Like,

Hazel: 24:34

the recovery? Sure.

Chris Ouellette: 24:36

That seems probably like a long time, right? Four to six weeks of

Hazel: 24:40

no weight bearing and then I still have cast after that. And it's like, I'll be good in summer, though.

Elizabeth Ouellette: 24:47

Yeah, that's important when you're in Tennessee, right?

Chris Ouellette: 24:51

That's right. And that's the way to put a positive spin on it. You're looking at the end result which is great. Can

Elizabeth Ouellette: 24:58

you boss your sister around? Little bit Astrid? Oh, I need water. I need this. I need that. You can't get away with some of that.

Chris Ouellette: 25:08

Around. She's nodding her head. Yes. Yes. Well, Hazel, you will do just fine. I can tell you're a very positive individual. So yes, it's and this will probably appear like a very short window in your life as you continue to get older. But it's gonna seem like a very long window at this age too. But you're right, you'll be ready to go for the summer. So that's cool.

Elizabeth Ouellette: 25:31

It's she has very positive spin on everything doesn't she knows everything. I'm learning from you right now. Yeah, we both I stubbed my toe and it ruined my day. I mean, seriously, my whole day was ruined. Because my toe hurt. The whole day. Seriously. It might go into the week. Hey,

Christina: 25:48

Sal is so strong. She actually had an accident. She fell off of her bike recently is she rides a trike. So

Elizabeth Ouellette: 25:55

motorized trike, right? Yes, yeah. So each, right? Yes. So

Christina: 26:01

she was turning a corner and it flipped. We weren't there. Because she's so independent. She just goes on her own. And she just got right back on her bike and came home and washed herself off. And then I just thought it was a little scrape. I had no idea. But it was a big one. But the way she handled it, I couldn't, I would have been a mess. She's able to carry on. She's just so strong.

Chris Ouellette: 26:29

That's great. Hey, so do you know or do you speak to anyone else that has CMT? Yeah, like, yeah, like who was in this? I don't know if you've ever been a camp footprint or anything like that.

Elizabeth Ouellette: 26:41

Your father went to Camp footprint and you haven't been like, what's up with that?

Chris Ouellette: 26:50

So who do you know who ScmT like another friend of yours or? Ally,

Hazel: 26:55

she lives in Alabama. We just talked on the phone recently. Last week. It's fun to talk to her because I'm only like two months and five days older than her. So like, we have a lot of in common about it. And we both are pretty positive. And we don't think about it. And like that's cool. We don't talk about CMT. We just talk about what's going on. Because I feel like if we talk about CMT, it won't really make it a fun time.

Chris Ouellette: 27:30

And do you think you'll ever visit each other?

Hazel: 27:33

We talked to once.

David: 27:37

Actually, our Gina Sweeney, who works for the CMTA Oh, enough to introduce us to Callie and her family. We've enjoyed getting to know them a little and I look forward to the opportunity to meet them in person at some point soon.

Elizabeth Ouellette: 27:52

That's great. How far is Alabama from you? pens on Where are

David: 27:55

you going? In Alabama? It's certainly a long state. But two, I think where they live is maybe three hours from Nashville. Okay,

Elizabeth Ouellette: 28:03

that's doable. That's totally doable.

Chris Ouellette: 28:06

Alyssa, you're surprised that is in the US?

Elizabeth Ouellette: 28:08

It is. Well, about three hours. I was thinking it was like across the country like she thought

Chris Ouellette: 28:13

maybe ama was in Europe or something.

Elizabeth Ouellette: 28:17

Thanks, Chris. That's really nice.

Chris Ouellette: 28:19

But you never you weren't great in geography. So

Elizabeth Ouellette: 28:21

I wasn't great. And maybe French. But you're really you got the award? So I don't know. Anyway,

Chris Ouellette: 28:28

you're my teacher. So,

Elizabeth Ouellette: 28:31

David, you're on the board of the CMTA. Why are you involved with the CMTA?

David: 28:36

Well, I'm on the board. But Christina does, I think just as much as I do, but we

Elizabeth Ouellette: 28:43

both do a lot. But I was involved.

David: 28:47

Very grateful for the opportunity to be involved with the board. And the short version is we're just not people who sit on the sidelines we'd like to be involved in if there's a way that we can make a positive change. And in our community, or in this case, with CMT, we will want to do that. We want to be a part of it.

Chris Ouellette: 29:05

You guys are making a big difference.

Elizabeth Ouellette: 29:06

Yeah. With this Derby, the Kentucky Derby. Yeah. So tell us about that event.

Chris Ouellette: 29:11

Are you going to do that next year to the annual here's for our listeners, okay, now you go to this event in May. Here's your plug.

David: 29:20

Well, thank you. Yes, it's always going to be the first Saturday in May, is going to be in Nashville. It's we think it's the largest Kentucky Derby party in Nashville, Tennessee. And this is an area that cares about such things. When I joined the board, one of the things that that we wanted to do was to be able to raise some money for the CMTA to help support things like camp footprint or finding a treatment and or cure and we had a Kentucky Derby party for a number of years. And so we thought it would be a natural transition. In addition to that, we thought it was important that if we're going to try to raise funds for the CMTA it's not a disease that impacts tons of people that we know, right. So we needed to do something that was fun that people would look forward to coming to. And so then we can have the type of REITs. That morning, we wanted to have in terms of raising awareness and raising funds. So we've had this year was year three, for the many years to come.

Chris Ouellette: 30:19

That's wonderful. And what is what are some of the details around the event? Is it at your house,

David: 30:24

we rent a facility, that's a very beautiful place, the ladies will wear their dresses and hats and guys aware attire, sport coats, and so forth, we try to have contests and mint juleps and we really do our best to engage the crowd. And we'll have some live auction, Bourbon items, that sort of thing. So very much a Kentucky Derby themed party.

Chris Ouellette: 30:52

And hey, so do you go to this party? Yeah, yeah. If you like. Yeah. Then do you bring any your friends to the party?

Hazel: 31:00

No, no. Kids allow No,

Chris Ouellette: 31:03

no kids. Except for you. Sister,

David: 31:06

Hazel generally will speak? Oh, good. At the Yes. At the fundraiser. She does a great job.

Elizabeth Ouellette: 31:13

So if I asked you to say something now, like you do at the fundraiser, like what kind of things do you say? Hello. And then

Hazel: 31:24

thank you for coming. Yeah, this helps support us raising money for plays CMDA. Because there's no cure or treatment for CMT. So having this we can fund for more people to help discover and help try to find out what it is. That's

Chris Ouellette: 31:49

fantastic. I think it's so great that you get up there and speak to the crowd, right? And that you sent a really strong message in terms of the purpose of the event, which is fantastic.

Elizabeth Ouellette: 31:58

Hazel, I don't think you really prepare for that. Do you just go out there and add livet, right?

David: 32:03

She does. Yes, she speaks from the heart. But yeah, perfect. She has great, as we've mentioned, leadership qualities, and she's able to take on that task and really do a great job of engaging the audience.

Chris Ouellette: 32:16

So he has all these leadership qualities. Do you think your parents had anything to do with that? Or is it true? Your Dad, you're pointing to your dad, and your mom, both of them? big are these

Elizabeth Ouellette: 32:27

leadership qualities that you have?

Hazel: 32:30

Well, I think I got it from dad, because he said at the bank, and the mom always is helping everyone. Right? The leadership qualities, I think it's like, I like telling people what to do. I guess being in charge of stuff makes me feel good to guess. Like I know, I'm helping.

Chris Ouellette: 32:54

Yeah, that's fantastic. And I think you said that very well. A leader is giving back to others and helping and you've got a strong drive there. And I agree with you. It is fun telling people what to do as well, right.

Christina: 33:06

Both Dave and Hazel are very decisive, which is a huge, okay.

Elizabeth Ouellette: 33:10

It is can you think of an example, Christina, how Hazel is decisive?

Christina: 33:15

Oh, well, I have an embarrassing. Yeah, let's

Elizabeth Ouellette: 33:20

invest time when

Christina: 33:22

Clara was starting to crawl and we were at the playground. I always think about this and how she started crawling towards the ladder at the playground. And I looked over at Hazel, I said, should she do that? And he's like, No. Yes.

Elizabeth Ouellette: 33:44

That's awesome. But it sounds like she's a mixture of the both of you. And that's fantastic. David

Chris Ouellette: 33:51

and Christina. So in terms of for our listeners was parents with a child with CMT? What feedback or words of advice would you give other parents who may listen to a podcast here? Don't

Christina: 34:03

tell the child to stop. Like for me, if Hazel wants to do something, we'll find a way to make it happen. Yeah,

David: 34:11

and I would say never treat them differently. We are. We're fortunate that both of our girls are great girls and have high expectations of themselves. But we also have high expectations of both of them. And CMT should not be a limiting factor in life in most any way. That is not related to perhaps athletics.

Elizabeth Ouellette: 34:35

Do you agree with them? Hazel?

Hazel: 34:37

Yes, well, we can. I can do a lot of Absolutely,

Christina: 34:41

yeah. And then me. Hazel has great hand eye coordination. She's a great editor. But long term like high jump or something like that would be a challenge. Yeah, so yeah, the The truth is your parents are Very good jumpers anyway. cards for you.

Hazel: 35:04

She is an amazing runner she

Chris Ouellette: 35:07

Yes. Oh, really?

Elizabeth Ouellette: 35:10

Do you still do that? Christina? Are you a runner now?

Christina: 35:13

Yes, I enjoy running.

Hazel: 35:14

Okay, like almost every morning at 530. And you do

Chris Ouellette: 35:19

that's kind of crazy. It's awesome. Yeah, it's very early. So I've never been a runner. And I used to run a little bit with my wife, but I'm the type that would always just look down the road and be like, Oh my God, when am I going to get to that stop sign? I cannot wait for this to be over. We're other friends of mine would run and they just get in the zone and they could do a marathon. I'm like, There's no way I could do it. But it must be great, right?

Christina: 35:42

Yes, I only go at 530 If I have friends waiting for me outside.

Chris Ouellette: 35:46

So I'm gonna motivate you there, right? Yes, yes, great.

Christina: 35:49

Is it a great activity to do if I ever have a problem, I tend to go or when I go for a run after the run, I tend to have the solution to it. So

Elizabeth Ouellette: 36:01

here's what I want to ask you also, what advice would you have? Now this is a big question for the entire CMT community. Like if you were talking your eyes as you're talking to everybody, what advice would you have to live a fulfilling and happy life with CMT?

Hazel: 36:22

Don't let having CMT limit you, because like, if it limits you, and you think that it's a problem, then it's definitely gonna make other people think that too. So you're not going to be as capable to do stuff, as you would if you believe that it wasn't limiting. That's why I said you had to have self respect. Because like respecting yourself, and who you are on the outside, and mostly the inside. That is more important that if you have CMT, or not, because, like, if you're applying for a job, they're not going to be like, Oh, you have CMT, you can't do it, they're gonna be like, Oh, they're not very positive. And they think CMT is very illuminating.

Elizabeth Ouellette: 37:12

Beautiful, you are so well spoken, and what a great attitude. Really, you're

Chris Ouellette: 37:17

gonna be very successful. And success can be defined in any way. But you're very determined, you're gonna have a great life ahead of you. And very honored. I'm honored that we're able to speak to you and your family today. So

Elizabeth Ouellette: 37:30

it's set, you guys are such an inspiration. And I hope a lot of people will take away your messages and bring them home and utilize them. Continue

Chris Ouellette: 37:38

doing what you're doing. I mean, it's being active Hazel spreading awareness. You guys having your fundraiser David being part of the board, Christina, everything you're doing in terms of appointments and making these appointments fun. And some folks actually do sit on the sidelines. For those that may be listened to our podcasts or listen to this podcast that are trying to figure out what do they do you guys will be an inspiration and moving forward. I'm sure. So really great. Thanks

Elizabeth Ouellette: 38:05

so much. Is there anything else you'd like to say before we come to a close?

Chris Ouellette: 38:10

Okay,

David: 38:10

well, I'd like to thank you for all the that you two are doing for the community. Oh, thank you. That's a huge help. And I appreciate all of your work.

Chris Ouellette: 38:18

Thank you. Oh, well, thank you so much. All right. Hey, so we have a few questions. You ready? Yeah.

Elizabeth Ouellette: 38:24

So I'll start with we have I want to do the last one. Yeah, you can do it if you. We have a few weird questions, always. So if you had a store, you opened your own store, what would you sell? And why?

Hazel: 38:41

I would sell like bakery stuff. And like Taylor Swift and Harry Potter stuff.

Elizabeth Ouellette: 38:49

Yes. There's the marketing team right there. That's awesome.

Chris Ouellette: 38:54

Hey, so given your leadership skills and wanting to be a CEO, so if now you were the CEO of your household, you just came into this position and you could change any rule that your parents have, what rule would you change? And why? That's it.

Hazel: 39:09

Good. Let's have devices in our bedroom.

Elizabeth Ouellette: 39:16

Okay, well, you continue to ask for that. You will get a one day.

Chris Ouellette: 39:22

That's awesome.

Elizabeth Ouellette: 39:23

Thank you so much, Hazel. You're just a gem. Well, Chris, oh, wrap it up. I hate Jay.

Chris Ouellette: 39:29

I know me too. This can go on for a long time here. So Liz, oh, if someone wants to follow us on social media, where do they go? Well, we

Elizabeth Ouellette: 39:36

have a Facebook and an Instagram page CMT from past and we also have a YouTube channel raw and unedited. And we have a brand new Tiktok channel and our official website if is this is very difficult to say every time I get tongue tied. www dot pod page.com/ CMT for me.

Chris Ouellette: 40:01

Tick tock. I didn't even know we launched tick tock, just last when did that happen? Yeah.

Elizabeth Ouellette: 40:06

Last week when you were on vacation we just decided to do tick tock. Oh, perfect. Am I on there? You are. And you're really funny. You're playing the drums. Are you?

Chris Ouellette: 40:15

Oh, really? Yeah, that was fun. Oh my god. Okay, so to our listeners, do you have a good story? Would you like to tell your story on our CMT from the podcast? Either write to us at info at CMTA usa.org and pitch your idea or go to our new website? As Alissa said, www dot pod page.com/cmt. For me, or fill out our inquiry form on CMTA usa.org.

Elizabeth Ouellette: 40:44

You said it without going public? No, I'm I was. Also Sarah cater and Ashley feller. I wanted to give them a shout out. Our two cmcaa podcast directors and supporters have created a phone line Chris Did you know we have a phone line now where you can call in and tell your story. Call us to let us know about the challenges you faced and the victories you've experienced with CMT. The number is 912335172. Again, 941-233-5172. And

Chris Ouellette: 41:24

please leave us leave us a review. Help us get the word out about the podcast. One way is to leave a review is to go to Apple podcasts or to pod page.

Elizabeth Ouellette: 41:34

All right, well, I think that's enough plugs for everybody and everything. So I think that's a wrap dress and as they say in Tennessee, holler if you

Christina: 41:44

need me, y'all come now.

Elizabeth Ouellette: 41:47

Y'all come back. Oh, yeah. Beverly Hillbillies, wasn't it? That was Y'all come back now. You hear? Thank you.

Hazel: 41:56

Thank you, guys. Awesome.

Chris Ouellette: 41:57

Thank you very much.