Julia and Herb Beron share a moving story of courage, resilience, and autonomy.
Julia's never known life without CMT. Having had falls, foot and knee surgeries, hearing loss, and a diagnosis of Type 1 diabetes, Julia, with her family's unconditional support, keeps moving forward with grace, independence, and self-confidence. Hear her story. Learn her secrets. Watch her future. It's going to be amazing!
Highlights
*Herb Beron is a member of the CMTA Board of Directors and a long-time supporter of CMTA.
*Julia Beron is a previous member of the Youth Council, Co-Illustrator of the book, Walk A Mile In My Braces, and Co-Leader of the CMTA COMPASS Group for Young Adults with CMT.
For more information about CMT and to support the CMTA, please visit www.cmtausa.org
Julia and Herb Beron share a moving story of courage, resilience, and autonomy.
Julia's never known life without CMT. Having had falls, foot and knee surgeries, hearing loss, and a diagnosis of Type 1 diabetes, Julia, with her family's unconditional support, keeps moving forward with grace, independence, and self-confidence. Hear her story. Learn her secrets. Watch her future. It's going to be amazing!
Highlights
*Herb Beron is a member of the CMTA Board of Directors and a long-time supporter of CMTA.
*Julia Beron is a previous member of the Youth Council, Co-Illustrator of the book, Walk A Mile In My Braces, and Co-Leader of the CMTA COMPASS Group for Young Adults with CMT.
For more information about CMT and to support the CMTA, please visit www.cmtausa.org
- All right, Elizabeth, you wanna do the countdown, girl?
- You always do the countdown.
- All right, here we go. One, two, three. Hello, everyone, this is Chris and Lizzo.
- We are a brother sister team.
- On behalf of the Charcot Marie Tooth Association, aka CMTA, we are coming at ya.
- Coming at you from coast to coast. I live in California and Chris lives in Vermont.
- And this is another fantastic episode of our famous podcast, named what, Lizzo?
- CMT, the number four, me; "CMT 4 Me."
- That's right, folks, "CMT 4 Me." What is "CMT 4 Me"? It's a comprehensive podcast covering all aspects of CMT, the voice of individuals living with CMT, their challenges, but more importantly, they're inspirational stories. We will also cover research updates, fundraising interviews with the CMTA community, such as board members, branch leaders, and CMTA leaders, and overall, an opportunity to spread awareness through the eyes of those with CMT. So, hey, Lizzo, I am really fired up about our guest speakers today. I heard we are interviewing someone of nobility, someone higher than a knight or lord, a baron. How sweet is that?
- What are you talking about? Do you even read my emails? We're not doing anybody of nobility. It's Herb Beron and his daughter, Julia Beron. They're Berons. The Berons,
- Oh!
- you know, on the board of directors?
- Oh, oh, oh. Okay, all right.
- No, the E-R-O-N, Beron.
- Got it.
- So, I hope you're not disappointed 'cause they're still gonna be great guests.
- All right, so that's cool. And now I'm on board. It took me a little bit, folks. He were go.
- He's always like this. Oh my gosh, I have to keep track of you, man.
- Yep.
- Sorry. Do you have an accent to say or something?
- No, I don't. Let's continue.
- Okay. So, let's give this intro. I'm gonna give a short intro. Herb is a longtime friend, and he is on our board of directors. I met him through the CMTA, and I remember meeting him, and he and Rachel were so excited to meet everybody at the board of directors. He goes, "Oh, hello, Elizabeth!" And I think Julia was about five years old probably. You know, "We have this little girl, she has CMT. We're so excited." So, Herb is a long time friend. And now, Julia is going to graduate school. She just graduated-
- Cool.
- and will be going to graduate school in the fall. And look at her, she's all grown up. So, these are our two guests, Julia and her dad, Herb.
- That is awesome.
- And you know what? I have to tell you, Herb, Chris has a little nickname for you.
- Uh-oh.
- I do?
- He calls you "Herbie, the Love Bug."
- There you go, "Herbie, the Love Bug."
- I just thought I'd let you know. It could be a worst thing name. That's kind of cute.
- It won't be the first time I've been called that.
- I'm sure. Hey, real quick, can you hear me okay?
- Yeah.
- Okay, 'cause it sounded like my headset went off, but here we go. All right, that's great. So listen, Lizzo, just to get things started, and by the way, let me back up, hello, Herb and Julia. So happy to have you guys.
- Thank you both.
- Thanks Chris, glad to be here. Thanks for everything.
- That's awesome. It is so great.
- And Liz. We're gonna just have a lot of fun, and this is a great father-daughter approach to a podcast that I'm really excited about. So, we're gonna take a little bit different approach. We were thinking usually we have these formal intros as Elizabeth gave a general oversight here in terms of both of you, however, I'd like to ask a few questions, and it really goes along this line. So Herb, we don't know a lot about Julia, but what can you tell our listeners about your daughter? What would you like to say about her?
- Hmm.
- And then we'll flip it over to Julia to give us some insight on her father.
- So again, thanks for having us on. This is great.
- Cool.
- I binge listened to about 15 episodes in a row on my drive from Florida to New Jersey, so I had a real good sense of what the podcast was all about. And kudos to you guys 'cause I think it's just amazing for the community.
- Thank you.
- Thank you. I guess if I had to describe my daughter in one word, it would most likely be warrior. My daughter has been through a lot from a very young age. She was diagnosed with CMT, I wanna say at age four.
- Wait, wait, Herb, did you say worrier or warrior?
- I would say warrior, not worrier.
- Oh! Oh, okay, not a worrier. Okay, that sounds better, warrior.
- She's definitely not a worrier.
- And listen, by the way, though, if you do look up Beron, B-E-R O-N, the name does stand for warrior, by the way. I looked that up today,
- Ha!
- so that's pretty cool.
- Okay.
- It's in your name.
- So, anyway, I think that that for Julia, obviously being diagnosed at a young age, we had no family history of CMT in our family, having to kind of really learn about the disease, how it's gonna affect her, really trying to be supportive for her, but all along she's been the one who's been the Beron Guinea pig with CMT with nobody else, us not really been having an uncle who walks funny or a cousin who has the disease. And so, she's been phenomenal. She's had multiple surgeries. And then, not to get away from her CMT, but when she was 18, she was diagnosed with as a type 1 diabetic.
- Oh, wow.
- Which was totally unrelated to her CMT. And so, she's just fought a lot of battles healthwise and has a great, great outlook on life, and we couldn't be more proud of her. And the fact that she's chosen a career path which will enabled her to help other people, because she wants to be a social worker who will work with people who are newly diagnosed with illness or disease. We're really proud of the woman she's become.
- So, Herb, could you give us-
- That is awesome.
- some more personalized traits about Julia? What do you admire about Julia?
- So, I think Julia is a tremendous listener. Julia really is the go-to ear for her friends when they are struggling with something. And given that Julia's had plenty of health struggles, the fact that she's the one that her friends really look to when they need some advice. So, to me, that is a great quality to have. I also think that Julia in a lot of ways really has such a great attitude about her CMT. You know, I think back, she made a really funny comment, this was years ago, where she said, "Ah, I got CMT. Oh, but then God mixed in a little bad hearing. Oh, but that's not enough. Let's throw in some diabetes into the mix too." And so all these sort of things, and yet she's had this attitude that has just really been so optimistic and has really... Everybody struggles with this, right? I mean, if you don't struggle with it, then that would be an anomaly. But I think Julia really is such a strong person and can quickly turn her struggles into, she'll find something that will all of a sudden, it'll go away, and she is just ready to move on and keep forging forward.
- That's awesome. That's just a great reflection, Julia, from your father, right? That is great.
- Yes.
- And so now turning the table here, Julia, what would you like to tell us about your father? What would you like our listeners to know?
- I am very lucky that I come from such a supportive family. I think that what my dad kind of said of the qualities I have, I think I owe that to you and mom, because I think that there are so many situations in which people grow up, and they're not supported by their families or friends or their community that they grow up in. And I think when I was diagnosed with CMT, my parents right away immersed me into the community as something to be proud of instead of hiding it. And I think that's something that I'm very, very thankful for. And something about my dad is he is just, Herb is the best. I mean, everyone says it who meets him. He's a hard worker. He's really shown me what it's like to work hard and the importance of school and work and being able to make your own money. He's really been so great about that. And I could go on and on about him, but I am just so lucky that I have the relationship I do with both of my parents. Typically, you would think that the daughter's more close with the mother and for me, I'm equally close with both of them, which I think can be very rare, so I'm really grateful for that.
- So how do they handle things? Like, who do you go to for what? You know, I'm sure there's a go... I don't know why there's a hand going up on my screen. Did you see that?
- I didn't.
- Okay, anyway, who do you go to for what? Like, you go to your dad... Obviously, when you want a cat, you don't go to your dad, you go to your mom.
- Right.
- Exactly. Yes, you pick your battles, right?
- And when you're-
- You know how to navigate.
- in pain, do you go to your dad? I mean, tell us a little bit how that works in your family.
- So, I think I go to my mom for the typical girl things. When I'm in school, I call my mom maybe like 10 times a day at least. Talking on the phone, sending each other pictures on Instagram. But with my dad, he is more of, I don't wanna say like more emotional, well, he is more emotional, but my dad, I think, has always been such a cheerleader for me as my mom is too. But my dad's really good with like the medical stuff or just wanting to be... Like, "I had such a hard day with diabetes," or "CMT," or "this or that," my dad is very, what's the word, you're very good in the way you talk to me. Even yesterday, I was having a bit of a hard day, and we went out for dinner, and we were able to talk about it. And, you know, just being able to have that relationship with my dad as well. Like, I could tell my dad anything, and I know that I would never feel judged for it. And that's something I'm really appreciative for. And I think I go to my dad for more medical stuff or more school stuff. I go to my dad for my application process for grad school. My dad was so, so helpful on that. And that was really our thing kind of doing together. So, I think both of my parents are great. I know I could go to both of them for anything, but they definitely do have each of their things that they're probably better to talk about.
- I'll just say when it comes to the shopping aspect, she doesn't wanna go to me.
- So, you guys, you're making me think. So, our daughter is 21, and she is at college at the University of Virginia, and Julia, I swear to God, she calls her mother, my wife, Mia, probably five to 10 times a day. Right? And I never get the call. So I'm always like, "Hey, what's she saying? "What's going on? Is everything alright?" And I feel like I'm like Herb, I'm very emotional. My wife is very kind of like matter fact. But then there's certain things that come up where the phone rings, and I get a call from my daughter. So, she knows kind of who to go to, but we're both very supportive. And so, it's just awesome to hear that. And sometimes, I wish I would get the calls 15 times a day. Then other times, I'm like, "Well, I'm glad I didn't get that call."
- So, Julia, could you tell us-
- I get the play-by-play.
- Go ahead. You get the play-by-play.
- play-by-play.
- Chris, do you get the play-by-play?
- Definitely.
- Okay. And you're probably glad, like, "I'm glad she got the information, and she's given me the play-by-play," right?
- Yep.
- And our daughter's in New York City this summer on an internship, and of course, we went shopping over the weekend, and my wife and daughter are going to all the stores, and I'm standing out on like Fifth Avenue, just walking around, right? Doing some work on my phone.
- Calling me.
- And I offer no advantage in that situation.
- That's what he does typically, if you go shopping with me, you're like, "Just go, just get it. I'll sit here and wait, just here, get it."
- I'd like to circle back, Julia, about what you said about yesterday, and maybe this isn't a good example and feel free to share or not, but you said you had a bad day yesterday, and then you talked to your dad. Could you tell us a little bit about that bad day and what happened, and how it was resolved?
- Of course. I mean, I'm starting a new life in a few months, a new chapter of my life going to grad school. It's a new town I've never really been to that much. And living by myself completely for the first time and figuring out a field placement and trying to figure out transportation, how am I gonna get to and from my work and my classes? And yesterday, I kind of just broke down a little bit. 'Cause I think for anyone, which my dad told me, anyone in your position, everyone feels this way. It's not just that you feel this way and no one else does. And that's something I learned from going to college because when I started my undergrad career, I had never been away from home. I was completely dependent-
- I remember.
- on my parents. And I went to North Carolina, kind of in the middle of nowhere, nine hours away from home. And I had to learn to do everything by myself and that feeling that that is something I think I'm the most proud of myself for doing, because that really taught me to be so much more mature and independent. And that's something that's really important to me. So, I think just having to do that when I was 18 years old and move my life to this random place, kind of having to do that again, in a way, is a little nerve-wracking.
- I just wanna also add, like yesterday, it started because the field placement she signed up for, she wrote, "I'm not gonna drive," so she only signed up for things that said "Transportation not needed." And then all of a sudden, she got placed in something, and they said, "Oh, well, we don't provide transport.
- You need a car.
- You need a car. So, all of a sudden, it had to do in some ways with her CMT, that we said, "Wait a minute, hold on. This is not what she had requested." And so then it was just dealing with the emotions of "How am I gonna, oh my God," all of this sort of happening. And so, we were able to kind of reset, have a conversation about it, and by the time we were done with some edamame and some good sushi, we were sorted.
- There you go.
- But I can relate to that. And again, this isn't about... This is interviewing you guys, but it does make me think of my daughter, right? Those situations can be very overwhelming. Just going to a new school, and who are your friends, and how do I get like when we're in the city? We walked with her from leaving her apartment, where do you go to the subway? How many stops is it? Which direction do you go to work? 'Cause she's very routine oriented, and that kind of unknown can create anxiety and be overwhelming. And it's tough, I would imagine. And that's a big change for you, right?
- Yes, it is.
- And it's pretty cool how you've gone through that and that you have someone you can talk to, and you're willing to talk to, 'cause I think a lot of people also keep that inside. They don't know who to talk to. And so, it sounds like you got a really awesome, supportive parent between your father and mother.
- So Julia, how does your CMT affect you daily, and what are the struggles that you face leaving and living by yourself? And do you have that down pat or is one of the things that worry you? So, tell us a little bit about your CMT, how you get along every day.
- So, my CMT affects like my legs and feet the most, not really my hands, a little bit, but mostly my legs and feet, so I do wear leg braces. If I'm around like going out long distances, I use a scooter to get around, which I've come to love.
- That's great.
- Typically, on a day to day basis, I don't really think about my CMT. I think 'cause I've really grown up with it for 18 years, this has really been my life as soon as I really started creating memories, I always have CMT when I think back on my really early childhood. So, for me, it's not really an everyday thing where I get outta bed and I'm like, "Oh I have CMT, so I have to put my braces on." It's just kind of a routine for me. So, I would say that like yesterday, I definitely do have bad days. I think as I've gotten older, I've become really aware of accessibility issues. And that's something that definitely gets me very riled up because that stuff is really upsetting to me. So, I think like how yesterday with the transportation, and I didn't wanna be like, "Oh I can't do this because I have a disability." I didn't want that to be a thing really. So, on days like yesterday, I might think about my CMT a little bit more.
- So, accessibility issues, like what?
- I just think, thinking of buildings, on like building with stairs, and a lot of doors don't open by themselves; and I'm in the scooter, so I have to hold the door open myself; and even something as simple as like someone using the handicap stall in the bathroom when every other stall is open, little things like that, yeah.
- And did you ever, I'm just thinking, did you ever have a time when you did not like that scooter?
- Yes.
- Do you remember that? Were you just like, "I'm not using this thing."
- Yes.
- And now you come to love it, right? So, tell us about that.
- So, I had a scooter before I started college, but I didn't really use it that much. I didn't love it. And when I was committed to college and getting ready to go, my mom told me, "You're gonna have to do the scooter to get around because you can't walk around campus carrying a backpack. You're not gonna have someone with you at all times." And I really just wanted to kind of blend in with everyone. I didn't really want to be like, "Oh, it's something that's just gonna make me stick out even more.
- Right, I can imagine.
- I was really upset about having a scooter. And my mom was kind of like, "Too bad." You know, you're dealing-
- That sounds like her. She's like, "Look, this is it, you're doing it."
- I was like, "No, I'll just walk around campus. I'll walk everywhere." And when I started college, having the scooter really made me realize, this is what makes it so much easier for me to be independent. And now four years later, I love my scooter. I feel powerful almost in it because I can do anything when I'm in the scooter. And you know, it definitely takes a little bit to get used to it, but I love it. I definitely wish I wasn't as tough about it. But you know, it took me a few days, and I remember my mom called me, and she was like, "How's the scooter?" I'm like, "It's pretty nice."
- You know how to back up and parallel park with that or?
- You know what, her friends would also like stand up on the side of the scooter.
- Yeah, so that's sweet.
- But the kids love it too.
- And almost really, it became less and less of her thinking of it as a way to stand out as opposed to something that was unique about her, and you know, just framed it differently.
- Yeah, something funny is my friends in college called my scooter, "Sally the Scooter." So, I would be going out, they would just be, "Oh, do you need to bring Sally? Is Sally coming with us?" Which it's kind of funny because it went from me dreading having it to almost, even though it's was a thing having it, I was, "Oh, Sally, she's being silly today," kind of thing. Like talking about it, kind of like joking around about it, made it a lot easier to get adjusted to.
- Right. And so Herb, I'm curious how you respond or did respond to her going to college and the fact of using the scooter and trying to navigate, and all of those things that she brought up, because just listening to Julia speak and say, hey, my mother was like, "Hey, you're using the scooter," that would be my wife. And I would be like, I'm sure I'd be like up late at night. I wouldn't sleep. I'd be like, "How's she navigating the first day? How is it going?" I'd be up crying like, "Oh, I'm gonna find an alternative where she doesn't have to use a scooter," and I'd be throwing a hundred different things at my wife, and she'd just be like, "Listen." And I could really get myself in a position of where I'm just kind of spinning outta control. That's just kind of who I am, right?
- So Chris, I totally see that, and I can identify with that fully.
- God, that's how I think.
- Yeah, I feel like I also knew that the scooter was gonna be a much better solution for Julia. That really could she walk to a class? Yes. But could she walk to a class and then go to the student center and then walk to the next class and then walk over to meet a friend? And I think the idea of all of the walking, not just one part of the day, but throughout her whole day, and I just thought that if she could accept being in a scooter to get around campus that she just have a better quality of life. At the end of the day, she wouldn't be exhausted. She'd probably be a lot safer in terms of not as many trips or falls. And so, it was really a great thing as we started to hear the change in her voice that, "Oh, you know what, I really love it." And when she'd send us a picture of a friend sitting on her lap and them riding across campus together on the scooter. So, I think it really became something that was additive to her college experience, not something that took away from it, whatsoever.
- And is it still Sally the Scooter, or do you have a different name for that scooter?
- No, she's Sally. I'm on my third one. Sally the third.
- You might have to give one like Herbie, Herbie the scooter.
- Maybe.
- Something like that, anyway.
- Lizzo, what were you gonna ask?
- I was-
- Chris, you've done so many of those British accents with-
- I'm surprised you didn't start talking like that today.
- I know, I know.
- George III and Edward IV. Sally the third.
- I know. Well, I didn't practice this morning.
- Herb, you've received phone calls, and Julia's fallen or something happened, can you tell us a little bit about that and how you manage that from afar?
- Yeah, so not well.
- Oh, right.
- You know, accidents happen, right? I mean people with CMT trip and fall. We were at my niece's bat mitzvah, and Julia, she got a fall. She called screaming, "I fell, I'm going to the emergency room right now." Sort of a freak accident, but it led to a surgery. I remember another time, I go on a golf trip once a year with my buddies, I had just landed in Mexico, and when my wife called, and I normally, I wouldn't hear from my wife when I just get there, I said, "What's wrong?" And she said, "Well, Julia just fell. She's going to the ER right now." And I was with two doctors, and I'm having Julia send me pictures of her knee, and I'm showing 'em to my doctor friends, "Do I need to fly back home?" And so, look, these are all, because of this disease regarding balance issues and regarding people who have falls, we're used to Julia having scrapes on her knees or like a gravel in the hand if she fell on the pavement. So, those are sort of normal things, and you kind of get yourself up and dust yourself off and keep going. And as long as it's not an a major injury, you sort of just move on. So, I think the answer, it was a roundabout answer, but I think when we would hear from Julia, I would say 90 some odd percent of the time was all good stuff. And then every so often there would be a fall, which is kind of a normal occurrence. And we just go into a different mode, both Rachel and I.
- So, Julia, I heard, I think you said, are you going to grad school?
- Yes, I am.
- So, tell us a little bit about that. What are you going to grad school for and why?
- So, ever since I was younger, I've always been so interested in the human brain and psychology and kind of like the criminal mind and why people do what they do and just have always had such an interest. And something about me is that I'm very hobby-driven, so I will pick up a new hobby, and I won't stop until I perfected it, and then I kind of get bored of it, and then I go onto the next thing. So, I mean, when I was younger, I wanted to be an artist. I wanted to work in Disney. I wanted to be a makeup artist. There were so many different things I wanted to do. But on the back of my mind, I always wanted to be a therapist. And I always was like, "Oh, if I'm one day gonna do art, I would do therapy." And then, I would get tired of doing art because I was just always looking for the next thing to do. And I knew right away going into college, I like declared my major immediately, I was a psychology major, and I actually always knew I wanted to do something within that field, but it was when I was diagnosed with diabetes, they sent in a social worker to talk to me, and I just assumed that she was diabetic also, and she wasn't.
- Hmm.
- And that's kind of when it hit me like, "Wow, this field is not diverse enough, which is a major thing that you talk to anyone in the field, they'll basically tell you the same thing. And that's when it hit me that I could do this for someone. And maybe someone would just kind of feel relief if I like walk into a room, or I scoot into the room just knowing that, "Okay, this girl's obviously has something that she has to deal with," and kind of having that immediate understanding. I just feel like that's so important. And I know for me growing up, I went to many different types of therapists when I was having a hard time with my CMT, and I never really was able to connect with any of them.
- Right.
- So, that's why it's so important for me. And I was kind of going all over the place. Do I wanna be a psychologist? Do I wanna get my doctorate degree? And then, I ended up applying for my MSW, so, my Master of Social Work. And recently, social work has kind of been taking over the psychology world in a way, because it's just another way to get there and have the career experience from my field placements. I think is gonna be really exciting for me to actually... I've been wanting to do this like my whole life, and now I'm finally getting the experience of what it's going to be like.
- So, Julia, I have-
- That's cool.
- some advice for you. Your mom says she talks to you a lot and confides in you. I think you should start charging her so that you can make a little bit of money on the side over the summer. And I'm sure your dad does the same thing with all his worries, he comes to you. So, start making a living out of that right now 'cause I can tell you're very talented.
- Thank you.
- And the second part of that is tell me about the boyfriend.
- Wait, before we go there, one other thing-
- Oh, come on!
- And one other thing in terms of helping individuals, I wish you all the best in grad school and beyond, and keep in mind, your first patient could be Lizzo. She needs a lot of assistance. So if you... No one in the family has really been able to reel her in, and we try, but you will be the one. So, keep that in mind. You'll have a paying-
- She'll be leading the intervention.
- You'll have your first paying client, so.
- Okay, can we get back to the boyfriend, please?
- Attach the check to the wall.
- Exactly. All right, yeah, I'm interested in the boyfriend. I love this 'cause my daughter won't tell me that much about boyfriends. This is great.
- So, I met my boyfriend almost four years ago as a freshman in college. And he was my first boyfriend ever, first love type of thing. I had a really hard time with boys before him. You know, I talked to a few, you go through a few duds. It's like kind of difficult.
- A few duds, I love it.
- In high school, when my friends started dating and talking to boys, and I just felt so different. I was so insecure and vulnerable. You know, kind of thought, my CMT, no one would like me because I have CMT. And then, I would diagnose with diabetes, and no one's gonna wanna deal with diabetes and CMT. And, you know, always was feeling like I had to settle. And maybe the people I was talking to during that time, if I wound up be treated the way I should, it was like, "Oh, they have to settle for me because I have a disability," so I have to settle for them. And I met Michael, my boyfriend, we started talking, I think, in October of my freshman year, so it was pretty much immediately. And I didn't tell him I had CMT for like a little bit because we met on social media, so I wasn't really... You know, if he dug enough through my social media, he would find out, but I really wanted him to get to know me first for my personality, because I think, you know, I am not CMT. Like I have it, but it's not who I am. It makes up a lot of who I am because of what I've learned from it. And I remember the first time we talked on the phone, we talked on the phone for like two and a half hours, And I was like, "Oh God, I kind of like him," So I kinda got to know him. 'Cause he was like, "Oh, I wanna like come into your school and meet you in person." And I was like, "Okay, like now I have to tell him." So I don't even really know. I don't even remember exactly how it went, but I did tell him, I was like, "I have a disorder, and I walk a little funny, so I used scooter to get around, and sometimes I need to hold on to someone's arm when I'm walking." And I remember very distinctly, he was like, "You have one of those scooters? That's so cool." Like very natural.
- That's awesome.
- And then, like a few weeks later when we actually met for the first time, the first thing he did was put his arm out for me.
- Oh, that's so sweet.
- Right? Four years later, that was kind of like when like our relationship started, was like the day we officially met, but I now cannot believe that I wasted time over people who were immature and did not accept me for who I am and that I thought I was less deserving of that. And that's something that a lot of younger children or younger teenagers with CMT reach out to me, and you know, they know I have a boyfriend, "And how did you like do this?" Or "I'm experiencing dating apps for the first time, how do I tell them I have CMT?" And like the first thing I tell them is please do not think that you don't deserve that because you have CMT or that there's not someone out there for you because I could have saved so many tears for years.
- That's such an amazing attitude. Julia, you're just like wise beyond your years.
- Exactly.
- And I asked my boyfriend now, like there'll be times where I'm like, "Do you wish I didn't have CMT?" And he always says, "It makes you who you are." And he's like, "I wish you didn't fall all the time, but you know, that's part of you." So, yeah, he's great.
- Herb, do you like him?
- Oh my God, he's the salt of the earth.
- Really?
- Julia in high school would always, not always, but she would ask, "Well, why don't I have a boyfriend? Why don't boys like me?" And my wife and I would invariably say, "They're not ready to deal with this." And at some point, most likely when you're in college, you're gonna meet somebody who's very ready to deal with this. And so, there was never a doubt in our mind that it would happen. It was just a matter of when it would happen. And so, we're very happy. Michael's a terrific young man. And we're just excited for Julia.
- Julia, what would you say to those people? 'Cause I've heard it on social media and other places, is like, "Oh my husband or my boyfriend broke up with me or divorced me because of my CMT." Do you think it's really because of that, or do you think they... What would you say to somebody like that?
- I think first of all, screw them.
- Exactly.
- I've had boys say that to me in the past, like, "It's too much to deal with. I can't deal with it."
- Oh my God.
- My friends tell me now, they're like, "We don't even see your CMT." It's not like they see me, and they're like, "Oh, she has a disability, she has CMT." They're like, "It's just who you are." They don't even notice it. And I think for someone to use that as an excuse, it's like terrible because you never forget that. I mean, I was told that before. And even though I'm in an amazing relationship now, the fact that someone can say that to you is just terrible. And I don't think that that's the reason why, I think that a lot of people when they're trying to get out of a relationship, they kind of like the first thing that they can do, like, "What's this person's biggest insecurity, and how can I just like get out?" And I think that a lot people might use that as an excuse, but I don't think that that is a good enough reason at all. I think when you fall in love
- Go ahead.
- with someone, you fall in love with them as like who they are. I've always said if something happened to Michael that disabled him, it would not change anything for me. And I just think that people who are immature kind of find the first thing to dig at the other person, and it can be really, really harmful. So, I don't think CMT at all is a good enough reason to not be with someone.
- Yeah, and that's a great response, right? I mean, you learn about yourself, you learn about others. And you learn, you're very positive and optimistic, and you learn like you don't want to be around those type of people, right?
- Exactly.
- Why would you?
- It takes a lot of self-confidence. Yeah, right, absolutely.
- So, one question I wanna ask as well is just, Herb, is during this podcast, obviously, you guys are a family, it sounds like even with Julia, you know, social work and grad school, we'll talk a little bit about Camp Footprint, or your friends calling you, and it just makes me think you guys are a family that I always kind of... It falls underneath that bucket or within that bucket of giving back. Right? Really giving back to others, et cetera. And Herb, it makes me think of you and being a prior chairman of the CMTA and still on the board of the CMTA, and I scratch my head when I think of the board members of the CMTA, and I'm curious from your perspective, why are you a board member? And what role do you play on the board, and why is being a board member important to you?
- So, yeah. Thanks Chris. Look, I joined the board. Elizabeth, you were one of the first people I met. I mean, I think I've been on the board for 17 years, something like that. And I think one of the things I've always said to my kids is if you're not part of the solution, you're part of the problem. And you know, it was really that sort of feeling of, you know, "Get off the bench," right? Like be a player in this, don't be a spectator. And so it was important for me, A, to start learning about this, because like I said, we had no family history. I had nothing that I could fall back upon. So, to back up a little bit, our son was born with a congenital heart defect and had open heart surgery at seven months. And so, Julia was born three years later. We had been still sort of concerned about our son's heart condition. And really, when Julia was diagnosed when she was four, we realized, "Hey, okay, we've done a lot in terms of the baby's heart fund at babies and children's hospital," and that was a cause that was important to us. but our son's fine. He's like skating around and snowboarding down mountains now. Like let's get involved with the CMT organization, and so we... My wife's a great swimmer. I'm like, I'll drown anywhere.
- You're better now.
- I'm better now.
- You're better now.
- I'm better. But we found Steve O'Donnell, another board member who was doing a swim in the Chesapeake Bay. And Rachel's from Baltimore, and Rachel reached out to him, and we said, "Let's go." And we went down to the Chesapeake. She swam a mile in the Chesapeake with Steve. The next year we went with seven of our friends who said, "We wanna swim too." And then the year after that, we started the team, Julia Swim in New Jersey, where we said we would launch the club. Let's just do it local. And I would say the following, I joined the board right after that first swim. We were lucky to raise a bunch of money for the organization the first year. They knew that I was serious about this. And when we moved the swim to New Jersey, we were concerned mostly with a couple of things. One, we didn't think that our little fundraiser was going to necessarily move the needle in terms of coming up with the treatment or the cure. But we did know that we had a young child who had this disability, this disorder, and it was just as important for us to spread awareness in the community. So the idea of making the swim into a local event where it really became a rite of passage of our community, that it was the Sunday of Labor Day weekend, people who were down the Jersey shore were back, kids were starting school the next week, and everybody knew that Sunday of Labor Day weekend, they were coming to the lake for the swim.
- It was kind of the like end of the summer.
- Yeah, the officially end of summer in our town. And so, I think part of it was, I would say trying to become a leader in my community, to be able to spread the message of, "Hey, this is a real disease. You have a community member who has it." And it was great that not only friends and family would donate, but you'd have local businesses where we'd just go canvassing around the town and talk about it. And our elevator pitch, if you will, about CMT and why it's important to support. And you have somebody in the community who has it. And you know, if you fast forward to when I became chairman, I remember sitting down with the old CEO, and I said, "We gotta think of our mission as a three-legged stool. We've gotta raise awareness. We've gotta raise funds for research. And we've gotta provide service to the services to the patient community who are dealing with this disease day in and day out." And really to this day, isn't that what we're still continuing to do?
- Exactly.
- And Chris, when you join the board, you see how we've grown the branch network, and how we've grown the centers of excellence, and now with camp and all the other things we're trying to provide, well, it still all goes down to spreading that awareness that you guys do such an amazing job with the cycle. And it's part of what we... We've gotta do this.
- Well, I'll tell you as well. I can remember when I joined, and that was the direct result of sitting with you over coffee. And I think that was in like Summit, New Jersey or Chatham, or something like that. And I was just impressed with what you were doing, what the board was doing, and just had a great conversation, Julia, with your father, and it was a done deal after talking to him. I'm like, "I'm in, I'm in." So it was cool. He's very inspirational.
- He has that effect on people.
- Yeah, I couldn't say no.
- Yeah.
- Like how could I not say, how could I say no to this guy?
- So Herb, you mentioned camp, and I wanted to talk to Julia about camp. I've never been to Camp Footprint.
- Yeah, neither have I.
- And I have to say at the beginning, I'm like, "I don't think we need a camp now." Everybody's gonna hate me for this. "We don't need a camp for kids. The MDA has a camp for kids, and I think we should have a camp for the elderly. And I think we should like have a BRACE program for people who can't afford it." And now, I just wanna take that all back. I still think we need a BRACE program, but thank God they didn't listen to me in this one instance, thank God, because I think Camp Footprint is changing lives, and I'd like you to attest to that, or let me know if it is. Am I right?
- And I'll comment, 'cause I recall as well being very skeptical "Oh, how many people are gonna go to this thing? Why would they wanna go? What are they gonna do at Camp Footprint?" And you know, "Is this really worth the effort?" So, back to Lizzo's, you know, kind of comment there. Tell us a little bit about it, you know, in terms of Camp Footprint, and what it means to you, do you still go, why did you go in the first place?
- Look it, they're looking at each other like-
- I know it's awesome.
- "What is it, what is it? Tell us."
- I think you have to take this one.
- Well, I'll take a little bit of it, but really, at the end of the day she should be the one to talk about it because when Julia... She had really never been away from home, and so this idea of she's gonna get on a plane and fly to Pittsburgh and go away for a week, like it was so foreign to her. Jonah Berger, who runs the camp, has been a friend for a million years and has tons of experience running camps. I was a camp kid growing up, went to sleepaway camp all those years of my life. And I remember when Julia got there, getting the call, and you know, "I wanna come home way. I wanna come home."
- Was that the first day?
- I'm sure.
- Yeah, first day. And then talked to Jonah, I said, "Look, I know she's fine. If something major happens, let me know. If not, she'll be fine." And then, the next day it was, "Oh, I went in a kayak today." And then the next day was, "Oh, the rock climbing wall, and we did a hike through the woods at night." And then, by the last day we got the call, and she was crying again saying, "Oh, I don't wanna leave."
- That's great.
- So, you know, I'll let her go into it, but the best thing to me was when she got home every night, invariably, we'd walk by her room, and we'd hear like lots of kids together on a FaceTime or a video chat, and they bonded in a way that you... Her friends at home who don't have CMT would say, "Oh, I know what you're going through." "Well, thank you, but you really don't." And this really provided such a bond. And I do think what's also happened with the camp is that we've now created this youth council of kids who started at camp, now all of a sudden, they're helping to get involved. They're teaching other young kids about, and almost becoming mentors to them. And now Julia's aged off of the youth council, and we're starting like a young adult council or something like that. But I think camp to me had a huge impact on my life. And I think what we're doing with camp for these kids is... One the biggest things that we do as an organization is the formation of Camp Footprint. And I can't wait to see... I know now we're talking about a second location on the west coast.
- You mentioned.
- And it's changing a lot of lives, it truly is. so sorry for that-
- It's excellent.
- go ahead.
- No, I definitely agree. Jonah always loves to tell everyone how I cried for two days.
- Yeah.
- You'll always be associated
- So,
- with that story. with that story now. But yeah, I mean, I remember when camp was first announced, I was like, "Oh, I'm not going to that." And Jonah called me and was like, "Why aren't you signed up for camp yet?" And I was like, "I don't wanna go. It's not my thing. I don't like being away from home." And he was like, "Oh, too bad. You have to come. You have to come here." And I was like, "Okay." Jonah can kind of talk me into anything.
- It's good to know.
- That's awesome. He's good at that.
- So, and the thing is too, not to go off topic, but I knew that Jonah was running it, and Jonah was one of the first people I met with CMT, and I've always looked up to him, and I'm very close with Jonah. So I knew that as he was telling me that I could do this and go to it and that he was in charge of it, I was like, "It can't be that bad." So, I cried the first night or two, definitely, you know, never left home before, let alone in a cabin in the woods, kind of in the middle of nowhere.
- You sound so irresponsible Herb.
- Yeah, right.
- In a cabin in the woods, in the middle nowhere
- Get her- with bears.
- in the woods, she'll be fine.
- The thing about camp that I really... One of my favorite things about camp is this camp was really made for people with disability. So, everything is so accessible, and there's nothing that you can... Like, I would be in gym class in school, and I'd be like, "Oh, I can't do that, I have CMT," you know, to kind of get out of it. But at camp, that is like not... you know, you can do everything. There's zip lining. There's the night hike in the dark and rock climbing, and it's all completely accessible, so you can never be like, "Oh, I have CMT, I can't do it." And then, everyone was, "Well, I have CMT, and I just did it." So, having that bond with people right away, also forgot to mention, I really never met any kid with CMT before ever.
- Right.
- So, I was really talking to adults with CMT. I talked to Jonah a lot. I talked to Bethany a lot. So, going and meeting people that were my age with CMT, and it really was life changing. And I think meeting the people is the best part of it. I mean, obviously you can do everything there. You cannot do a thing there because it's so accessible, and everyone's doing it, and everyone cheers each other on. And just the connections I made the first year of camp, I came home hysterically crying 'cause I was so upset to leave. And I still talk to so many of these people now. And I think that doing camp really led me to the youth council because I do think that camp kind of helped create the youth council a little bit.
- Absolutely.
- That's another thing that like, I could talk about the youth council all day, like by far in my life, that was the best thing I've ever done. And you know, for me, it wasn't about what's this gonna look like for colleges or like grad schools or my resume, it was really being a leader, something that me as a little girl would've loved to have, an Aaron Black to talk to right or a Riley Williams. Like I would've gone crazy for that, so I knew that I had to give that to someone maybe four years old, just diagnosed with CMT. I wanted to be that role model for someone. And when I get messages from younger youth with CMT asking for advice, it's like the best thing ever because I'm like, "This is what I wanna do with my life." And you know, I owe a lot of that to camp and Jonah Berger and the youth council.
- That's so nice.
- That's so cool. And as you're speaking, I'm thinking, you must have walked out of camp or left camp just with this level of confidence that has just increased. Like, "Look at all the things that I can do." And that sounds really cool.
- Yeah. The thing about the community that you form, I mean, I kind of have a funny story, but at the beginning of this year, I was studying for a psychology test, and all of a sudden, a father of neurology comes up on my screen, and it was Jean Charcot. And I texted my dad, and I was like, "Wait, is this like the Charcot?
- The Charcot.
- And he was like, "Yeah, that's him."
- And so, I'm in a group chat with everyone in the youth council, so I sent the picture, and I was like, "Hey, look, who popped up on my screen tonight?" And they were all like, "Oh my God, that's my bestie." Oh my God-
- That's cool.
- I have this disease named after him. I think I know who he is. And just even having a bad day with CMT, like I have literally in the palm of my hands, on my phone, so many people I can talk to that just, I don't need to explain myself further, if that makes sense. You know,
- It does.
- with my friends who don't have CMT are amazing, don't get me wrong, but I can't be like, "Oh, you know, my nerves were like really inflamed today, and I just had a bad day." And they don't know what that's like, you know? The people I've met, it's just, "Go to camp and get involved with the youth. You don't have to be on the youth council to be involved. Like, there are youth hangouts. There's so much stuff going on. They like always need more help and wanna hear everyone's ideas." And, you know, when I left the youth council because I aged out, I was so sad. And I said-
- Yeah, I would imagine.
- Yeah, and I looked at Jonah, and I was like, "I'm not done. There's so much more I wanna do, don't forget about me. I wanna make a young adult council." And, you know, when we met at the retreat, we kind of like brainstormed it. And he was like, "Here are some people I wanna bring on 'cause I think they would be great. And this is really going to be about kind of being in your 20s with CMT," so applying to colleges, how to ask for accommodations, dating, maybe, sexuality is like such a big topic now.
- Absolutely.
- Just all those different things that, you know, 'cause it's hard to go into your 20s anyway, but going into your twenties with the disability and looking for jobs and how to ask for your accommodation. Because that's your right to have like your accommodation, how to ask, and you know, kind of just how to be an advocate for yourself. So I'm really excited about the next step with that, you know, kind of making it more a bigger thing that we're having a meeting next week, and I think 20 people have signed up already to come on, and so I'm really excited about that.
- Julie, I'm so impressed with you, and I'm impressed how the relationship is with your family. And I have to tell you, I know Chris has one last question to ask, but I did talk to your mom this morning, and she was shopping, but she wasn't shopping, she was with somebody who was shopping, and anyway, 'cause she just came back from... That's right. Herb is very happy that Rachel was not shopping. She just came back from Paris, and she was with Josh. But Julie, she said about you, you're an old soul, you're very, very honest and loving, and that she never sugar-coated anything with you about CMT. And she says, Julia's taught me so much about enjoying the little things in life. Like I wanted to go and travel and big and this and that, and actually you've taught her so much because she gave it all up because now she sees that life isn't just about those big things. It's about the tiny things. And so you really, and you're very artistic. you've lived on your own. She's very proud of you, and that you're going to do very, very well. And you're a combination. I'm not sure if you agree with this, but you're a combination of both your mom and your dad. And she also told me you're kind of conservative too, which would surprise me, but that there you're a beautiful individual inside and out. And Herb, you know, Rachel is so kind, I'm not sure what I would say... I'm not gonna even say it. Like if somebody asked me like what she'll like, I don't
- Yeah, she can answer that.
- No, I love but just, she was so like exuberant. You're the kindest-
- Very expressive.
- Very, yeah. So, for her, Rachel said, you're the kindest, most generous soul she's ever met. You're a perfectionist, and you're the best father ever. And you're successful. You're a great friend. You play the guitar. You know how to cook. You're creative. The only complaint that she did have, 'cause I asked her what your annoying habit was, and this, she told me not to say on the podcast, but I'm gonna say it anyway. She said that you say, "you know," a lot. And that really makes you mad when she goes, "you know, you know," and she says it, and she goes like, "Just be quiet." And then the second thing is-
- I tried very hard. I could hear her in my ear saying, "For this podcast, don't say, "you know." So, I'll be curious when you play it back if every other word was "you know."
- The second thing she said was you are so-
- Oh, she had two things.
- She had two things, two annoying habits. And this is really nice, that you care for everybody. Like everybody, like anybody can call you any time of night, any time of day, you are there, but you will leave your family behind, her pregnant with a child to go and do something for somebody, and she's just like, "Herb, what about me?" And you go, "Oh, this other person really needs me right now." But what she was saying is you're so thoughtful, to the point of being you're like so thoughtful, it can be annoying sometimes that you're so thoughtful.
- That's great. That's great.
- Definitely not, I mean, agree with that a little bit, but this is something that I do very much appreciate, but like today my glucose monitor fell out, and he was like, "Did you call them? Did you call them? Did you get a replacement? Did you get a replacement- for your insulin? Did you card count for that? Did you check your sugar? Your sugars are high, Julia, did you see your sugars are high?" I'm like, "Yes, Dad."
- Hey, Chris, you're nodding because that's you too, right?
- You and I are so identical.
- Absolutely, absolutely.
- And I just wanna add, because you said, I like really appreciate the little things, and I really think I learned that from my dad because I'll come in at night to go in my room, and my phone's plugged in, and my computer's plugged in, and there'll be juice boxes next to my bed and a cold water. And he'll clean out my needles out of my insulin kit 'cause I never do it. And. you know, I'll just let it pile up.
- How sweet.
- He cleans it out, and he puts fresh ones in. And it's actually something that I like just love about him so much. And it's actually something that I've noticed Michael does too. Like, he'll leave my charger kind of on my like dresser instead of on the floor, so I can reach it easily. And that's what I really wanted to say, like the little things, you're the best at that.
- Ah, it's so awesome.
- I like the little things. I think big things are great, but I think more little things matter than less big things.
- Well, yeah.
- Thank you, Julia, that's awesome. Yeah, really nice.
- This is just, yeah, really nice, really impressive. And back to this is also an emotional podcast, and I'm an emotional individual. And just so you know, I think if five times plus during this podcast I have had water in my eyes and that is joy and appreciation for you guys and your family and what you do and your positive attitude. And it's very inspirational, and I'm sure it will be for our listeners. And you guys rock. You're really, really great.
- Thank you.
- So in closing, one thing Lizzo and I would like to ask and so think about this. So, as a father-daughter team, right? If Lizzo and I could grant each of you one wish, what would that wish be, and who wants to start?
- Oh, I know what mine is. So here we are. We're the wizards. We're gonna grant you each a wish.
- I'm "I Dream of Jeanie."
- Yep.
- I think just the world we live in now is so much different than even what I grew up in. And I just, especially now, it's like the school shootings and stuff, if I had one wish, I just want kids to be able to go to school and not be scared to go to school, because even me, I'm going to a new campus, and I'm kind of scared to go to school, and that's one of the reasons why. I loved school growing up and being able to go to school and feel safe. And I think if I had one wish, it would just be that everyone could just make peace with each other and just-
- Be kind.
- Be kind to one another.
- And so Herb, we'll transition to you.
- Yeah, so I think, "Well, the obvious wish would be that we have a treatment for CMT." That's what I think about every day. It's why I'm on the board of the CMTA. I can't think of anything else that I wanna really accomplish in my life than being part of a group of people who share that common goal of getting rid of this disease. And I would say, and I want people to know that the board of the CMTA is made up completely of people who either have the disease or their child or another family member have the disease. There is very little wasted motion on the part of the board. Everybody is in this for the right reasons. We are all focused on the end game. And I just want the listeners to know that it's an incredibly dedicated group of people. I feel so fortunate to be a part of it. I can't wait for what the future holds with all that we can accomplish.
- Fantastic answers.
- Thank you. Thank you both so much for this podcast. Do you have any last things to say, because I am just blown over,
- We really appreciate it. by this process,
- same here. I've just such a good feeling.
- No, I just wanna say thank you so much for everything you're doing for the CMTA, and it's just, you guys are a huge part of all the good that's coming up, and I have faith 1000% that there will be a cure for CMT in my lifetime. And that's just something that the dedication of everyone, I think everyone on the board has their reasons why and like their story. And I think that all together is just another family kind of. I always think of my CMT family as my second family, because just the bond that we all immediately have, like we're all doing this for the same reason. And you know, I think like this podcast is amazing because someone might stumble upon it and be like, "I'd never heard about CMT before." And just by listening to it, it's such an amazing podcast to listen to. And I just wanna say thank you so much and thank you for having us on.
- Of course.
- Just thank you for what you guys are doing.
- I wanna say the same thing.
- Awesome.
- I mean, look, Chris, I had like napkins on my car seat that were like drenched, listening to 15 straight podcasts to you guys. I was like, "Wah!" But you know, it's a great organization. We're really trying to do all of these things, like I said, raise awareness, provide services, raise money, and God-willing, we're gonna keep doing that, and get better at it as we go.
- That's awesome.
- Well, I am not-
- Thank you.
- an emotional person, and I have had tears in my eyes also. So, that's saying something.
- Well, thank you guys. Thanks very much. And Lizzo, as we transition, weren't you gonna reference something about YouTube?
- Yeah, so we have a new YouTube Channel. It's live, raw, and unedited, our podcast, and we're going there. So if you go to YouTube and put in "CMT 4 Me" podcast, you will come up with that channel and little by little, I'll be adding those.
- That's great.
- And the other thing I wanted to say is if you listen to this podcast on Apple podcast, there's a place to leave reviews, and there's a couple there. And that really gets us motivated to do more podcasts. And we wanna hear from you and even suggestions that you might have for other podcasts. So, leave a review if you listen to on Apple.
- Yeah, well the main reason to leave a review is it makes Lizzo and I feel a hell of a lot better.
- Yeah, there's no other reason, but that, right?
- Yeah, no negative reviews. So just so you know.
- We'll take this off.
- So, in closing, Lizzo, if someone wants to learn more about CMT and, or to donate to our cause, where should they go?
- cmtausa.org. And there's so much information on this website, not only donating, but about resources and all the community engagement and the walks and the youth council, you can find it all there.
- Exactly. And folks, it does take a lot of money to fund research in order to find a cure for CMT. If someone was so inclined to generously donate to our cause, please go to cmtausa.org.
- And to our listeners, do you have a good story? Would you like to tell your story on the "CMT 4 Me" podcast? Write to us, we wanna hear from you. Info at cmtausa.org, pitch your idea, and we'll get in touch with you.
- That's awesome. Well, folks, until next time we're signing off, and we'll catch you later.
- Thank you so much. Bye bye.
- Thanks, guys.
- It's great.
- That's it guys.
- Thank you guys.
- Thank you so much.
- Did you hit the stop recording, Elizabeth, so it's saved?
- Will you stop acting like Herb?
- Huh? Yeah.
- Did you hit it?