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Comin’ at you! What do you get when you mix chaotic creativity with organized comedy? You get the #1 CMT Podcast available today: CMT 4 Me. Despite being polar opposites, this brother-sister team brings it all together in an exciting and informative series focused on all aspects of CMT. Meet Chris and LizO Chris and Elizabeth Ouellette), dedicated siblings on a mission to magnify the voices of individuals with CMT, share their challenges and success stories, and raise awareness of Charcot-Marie-Tooth disease.
Highlights
Liz Ouellette: 00:04You kind of look like Darth Vader.
Chris Ouellette: 00:19Luke, this is your father.
Liz Ouellette: 00:19Crazy. I like it when that Ray of sunshine comes down. It looks like a light saber or something.
Chris Ouellette: 00:23It's whenever I speak, a ray of light comes down on me.
Liz Ouellette: 00:27A light just radiates out of your head.
Chris Ouellette: 00:29Yeah, yes.
Liz Ouellette: 00:34Yeah, okay.
Chris Ouellette: 00:34All right, okay.
Liz Ouellette: 00:34Here we go.
Chris Ouellette: 00:36So, we'll do our intro, and then-
Liz Ouellette: 00:40Hold on. It's not working.
Chris Ouellette: 00:42I'll just reference.
Liz Ouellette: 00:42You were just frozen.
Chris Ouellette: 00:43What?
Liz Ouellette: 00:43You were just frozen.
Chris Ouellette: 00:47It's because of the internet.
Liz Ouellette: 00:48Okay, it doesn't matter. All right. What? Are you frozen again?
Chris Ouellette: 00:58No, I was just kidding. I'm not frozen.
Liz Ouellette: 01:12 I thought you were frozen. You're silly.
Chris Ouellette: 01:14All right, so when we do the intro, then I'll just transition that this is a slightly different episode, right? This episode is to meet your host, Chris and Liz O, okay?
Liz Ouellette: 01:27Yeah.
Chris Ouellette: 01:27All right. God, my eye is itchy.
Liz Ouellette: 01:32Mine is, too.
Chris Ouellette: 01:32 I have a hive right on the ...
Liz Ouellette: 01:38Well, we are at a camp.
Chris Ouellette: 01:40 I know. Okay, ready?
Liz Ouellette: 01:41There's bugs crawling on you. Yeah, I'm ready.
Chris Ouellette: 01:43One, two, three. Hello, everyone. This is Chris and Liz O.
Liz Ouellette: 01:50We're a brother/sister team.
Chris Ouellette: 01:52And, on behalf of the Charcot-Marie-Tooth Association, AKA CMTA, we are coming at you.
Liz Ouellette: 02:04Coming at you not from coast to coast, from the East Coast. We're both in Vermont, and I'm here for a couple more days.
Chris Ouellette: 02:11Nice. We're at our camp in beautiful Colchester, Vermont on the beach of Lake Champlain.
Liz Ouellette: 02:20Yeah, it's nice.
Chris Ouellette: 02:20So, Liz O, guess what.
Liz Ouellette: 02:22What?
Chris Ouellette: 02:22This is another fantastic episode of our famous podcast named what?
Liz Ouellette: 02:27CMT, the number four, me, CMT4Me.
Chris Ouellette: 02:31That's right. What is this podcast all about? It is a comprehensive podcast covering all aspects of CMT, the voice of individuals living with CMT, their challenges, and more importantly, their inspirational stories. We will also cover research updates, fundraising, interviews with the CMTA community, such as board members, branch leaders, CMTA leaders, but overall, an opportunity to spread awareness through the eyes of those with CMT. So, Liz O, I'm pretty excited about today's podcast. Totally different, right? This podcast is going to focus on what?
Liz Ouellette: 03:09Me and you. Who are we? Why are we doing this? Why are we even doing the CMT4Me Podcast? What is our relationship? What are we all about?
Chris Ouellette: 03:18That is right, folks.
Liz Ouellette: 03:19Should we start?
Chris Ouellette: 03:20Yeah, that is right. There is a lot there, and we've been thinking about this for quite some time. We really wanted our listeners to understand a little bit more about Liz O and I and our past, our history, why we're engaged in the CMTA, as Liz O said, why we do this podcast. What I'm hoping is if you folks have questions, you're able to send those in, and we can answer them on future podcasts. So, where do we start, Liz O?
Liz Ouellette: 03:52Well, do you want to start by saying how I got involved in the CMTA?
Chris Ouellette: 03:59No, I don't want to start there at all.
Liz Ouellette: 04:01Okay, well then why'd you just ask me?
Chris Ouellette: 04:03Just because I love to ask you a question and then totally, we don't do it. So, I was thinking ... Let's start a little bit, right? So, I'd like to go back to kind of our upbringing. We were both born here in Vermont.
Liz Ouellette: 04:18Oh, way back.
Chris Ouellette: 04:18We're going to go way back to the beginning. Just so our listeners know, I am currently ... Actually, I'm going to be 56.
Liz Ouellette: 04:26So, now we're talking about you. What the hell? I just started, me, and then you're like, "Well, I'm going to be." It's not about you. It's about us.
Chris Ouellette: 04:34Right, so this is the Chris Podcast, and you won't learn much about Liz O, but you're going to learn a lot about me. So, it's perfect. I'm right in my element, right in my spot.
Liz Ouellette: 04:45 I should have never agreed to this podcast.
Chris Ouellette: 04:48 I know, I know.
Liz Ouellette: 04:48Okay, let's get going. Come on.
Chris Ouellette: 04:49All right, let's do it. Go ahead.
Liz Ouellette: 04:52No, go ahead. You have this great idea.
Chris Ouellette: 04:54No, it just made me think, right? I'll be 56 in July. We were born in beautiful Burlington, Vermont. In reflection, it really made me think, what's the story? And, what's the connection? One thing about our upbringing, and I think it really ties into the fact that we're engaged with the CMTA. We're engaged with the CMT community. And, we'll touch base upon our fundraiser, Cycle4CMT, going into its ninth year. But, really there's a pretty good background in terms of why we are engaged and I think why we give back and where that really came from, right? You see where I'm going with this, Liz O?
Liz Ouellette: 05:33Yeah, I do. I do.
Chris Ouellette: 05:35And, what are some of your thoughts on why I think we have this foundation in terms of giving back to the community in a number of different ways over the years? Where'd that come from?
Liz Ouellette: 05:44Yeah, I think the spirit of volunteerism, it came from ... I don't even know if that's a word, but-
Chris Ouellette: 05:49 I was just going to say, "Is that a word?"
Liz Ouellette: 05:51Cool. It's volunteerism. Anyway, it is today. And, it goes back to our mom who has always been very generous, giving, and not just with her family, but with people she doesn't even know. This is an example, and I know you have many, many more, but at Halloween, everybody loved our house at Halloween, because she just didn't give a Reese's Peanut Butter Cup or a quarter. She would order Domino's pizza, and everybody would just come and chow down pizza, go out. It was just so much fun, and people remember that to this day.
Chris Ouellette: 06:28 I still have friends of mine that are in their 50s, that they go, "Oh, my gosh. How's your mom doing? I remember those Halloween nights." And, she also would take the popcorn machine from, at that time, the candy store that our folks owned down on Church Street and be giving out popcorn as well. But, people loved that. Then, I remember we used to have to go out and pick up all the Domino's Pizza boxes all around the street, because we learned the entire Burlington area. But, it was pretty cool. But, that was her thought, right? Doing something different, right? And, what more could she do? Like you said, there's so many stories. I think about if you and I ever went with our mom, Bev, to Church Street downtown, one thing is everybody would run up to her. Everybody knew her, right? And, she was always trying to help people, and I remember-
Liz Ouellette: 07:20Not only people that we knew from school, but she knew a lot of the homeless. She knew a lot of the people that didn't have a lot of money, because that was her focus. She wanted to help this community in Burlington, right?
Chris Ouellette: 07:32Yeah.
Liz Ouellette: 07:33She was always out there.
Chris Ouellette: 07:34That was a full time job.
Liz Ouellette: 07:35Yeah, and she has a degree in psychology, and she would talk to these people. But, for us growing up, I hated it at first. Looking back, I didn't like it. I didn't hate it, but it was just, where do we have to have Thanksgiving, at St. Jude's? This is a rooming house she had with people that didn't have tons of money. It was Section 8 or whatever. And, we had Thanksgiving, but we learned to accept people of all kinds. It doesn't matter about their financial background, right?
Chris Ouellette: 08:05Yeah, yeah, and I think it was also her way of telling us, A, be fortunate you have a family, right? And, back to that Thanksgiving is about giving back. So, as a family, we will together give back to the community. And, I do. I remember that. I was like, "Oh, my God." I remember this Thanksgiving, and she decided that, and we're around all these 80, 90 year old people. What fun, though? She was so humorous. She dumped all these apples in this big container filled with water, and the elderly folks were bobbing for apples. She looks at me, she's like, "Your turn." I'm like, "There is no way I'm sticking my mouth in that water."
Liz Ouellette: 08:41 I remember that.
Chris Ouellette: 08:45But, it was great. It was adding fun, and the people loved it.
Liz Ouellette: 08:47Mom is a lot of fun.
Chris Ouellette: 08:47So, I agree with you. She is a lot of fun, but I remember it was that reflection of leaving and being like, "Though I didn't want to go, that was a good day."
Liz Ouellette: 08:57It was.
Chris Ouellette: 08:57And, really starting to understand that. Then, I can talk about that, and I'm sure you can in our own lives. I think that carried on even with my son, Warren, or my daughter, Lila. It might be Christmas, and we go downtown, because there's a number of homeless folks in the downtown area. It's cold, and it's just something we do. We hand out coffee and food to people randomly. That definitely came from mom, so pretty proud of that.
Liz Ouellette: 09:24Right, I am too, and I think life, honestly, and I know this was instilled in us early on, but I think life is about giving back. It's about giving back to the community, and I take a lot of pride in giving back. Just to volunteer and to help a group of people is a gift in itself. It just makes you feel good, and you know that you can make a difference, right?
Chris Ouellette: 09:48Totally.
Liz Ouellette: 09:49That's where the CMTA comes in.
Chris Ouellette: 09:52Yeah, and I think talking about that is the CMTA and just thinking about Yohan and his diagnosis and really how you personally have been involved with CMT and the CMTA for how many years now?
Liz Ouellette: 10:10So, it will be 20 years in December of 2022. It will be the first one-
Chris Ouellette: 10:16And, folks, keep that in mind. That is 20 plus years total volunteering. When I say volunteering with Liz O, this isn't five hours a week. This is 40, 50 hours a week, weekends, never complains, totally engaged. And, this is what her life has become. I will speak on behalf of those with CMT and people in the CMTA, so fortunate to have someone like that driving to advance research, help find a cure, spread awareness. And, the stories go on and on of what she's done, but that's pretty in-cresible. In-cresible? You like that, I just made that word up, in-cresible.
Liz Ouellette: 10:59Just go with it.
Chris Ouellette: 11:00 I love it. Hey, instead of incredible, that's in-cresible. Sweet, okay, I got that down. But, anyways, very impressive. That's giving back.
Liz Ouellette: 11:09So, when Yohan was born, we had no idea. We don't have CMT in our family, and so he started exhibiting signs early on just with light sensitivity and walking on his toes. At seven, he was diagnosed, and as parents, we didn't know what Charcot-Marie-Tooth was. We had never heard of it, and there were very few, few, few resources at the time. They gave us the address of the Charcot-Marie-Tooth Association. At that time, we had just moved from France to California, and I decided to go back and get a degree in psychology.
Liz Ouellette: 11:42Then, when I was done with that degree, we learned that Yohan has CMT. So, I'm like, "How can I use this degree?" It was sort of just meant to be. So, I just got involved, and there were two people working at the CMTA 20 years ago. We knew a little bit about 1A and other types, but nothing to the extent. We didn't have the resources at all of what we have today. So, we started building the branch network that we have now and awareness month. It was so fun at that time, because we didn't have much. With Jeana Sweeney, we just built out the whole organization to all these fantastic resources and met so many people. So, I do this for Yohan, but I just feel like the CMT community is my family.
Chris Ouellette: 12:27Yeah, it's awesome. Whoa, what's all that background noise there? Are you hearing that background noise?
Liz Ouellette: 12:33Yeah, it's probably because I'm just hitting the chair.
Chris Ouellette: 12:36Okay, that's what it is. Yeah, no, it's pretty impressive, pretty impressive when you think back. I come back to Yohan's diagnosis and/or my first involvement with CMT, and I actually do recall. I think it was on a phone call where you said, "Hey, Yohan and CMT," and my first comment was, "What do you mean? What's CMT? What do you mean there's no cure? You know where science is. There has to be a cure, and what does this mean for him?" And, it really took me, I think, quite a while to understand what CMT was and/or how that may affect Yohan. Obviously, you guys are in California, so I didn't see you all the time. All I could hear are some stories about wearing braces and potential surgeries in the future.
Chris Ouellette: 13:27Then, you guys would come to Vermont, and he was very young. You really couldn't notice very many symptoms being expressed, but also knowing that there was this underlying kind of diagnosis that you guys were trying to navigate through and also trying to explain to the family. So, it was really ... Then, the fact, I think for me was every summer coming to Vermont, and he would just ... Every year, he's older and older. Then, I could start over a period of time seeing some of these subtle or slight changes from one year to the next. That brings up the components of, at a young age, hey, let's go for this walk. Hey, let's go for this hike. Oh, my God. You've really got to come in the winter and try skiing or snowboarding. That'll be cool.
Chris Ouellette: 14:19And, he engaged in those items. Then, I could see over a period of time, it was like, well, I really don't necessarily have an interest in doing that. Maybe that was his way to express some of the challenges, though I knew he would want to do it. I could just see that over a period of time, based on his symptoms, that got me a lot more closer to what CMT is and really grasping what this disorder is. I would think it's probably challenging when you talk to someone who doesn't know anyone with CMT or what that is. It might be hard for them to make that connection to really what it is.
Liz Ouellette: 15:00It a little challenging, because I will say, "My son has this neuromuscular disorder," and then they see him, and he looks fine. What are you talking about? You're totally the making this up, but let's just go through some of the symptoms that people with CMT have. Chronic pain, burning nerve pain, no feeling, because it affects the sensory nerve, so no feeling in your lower legs or your feet, in your hands. Your muscles start to atrophy, because the nerves don't work anymore, so people get claw hands, claw toes. They have tremors. It can affect your back, scoliosis, kyphosis. Some people are affected with their vocal cords, their hearing. More people than I thought are affected by their breathing. People need surgeries and the feet don't fit into the high ...
Liz Ouellette: 15:48They either have really high arch feet or totally flat feet, and the toes curl. It's a challenge, and the biggest challenge when Yohan was first diagnosed, they thought he had cerebral palsy. So, I'm like, "Okay, it's very mild. It's not progressive." Then, they came back with a CMT diagnosis, and it's a progressive disease. So, it's not going to get better. It's not getting better. There are treatments like exercise or physical therapy or occupational therapy or surgery, but it's going to keep getting worse until we find a cure. So, that's what I'm all about, trying to find research and spread awareness and increase the resources we have. We're doing a great job in that, but I'm still frustrated that we don't have anything to stop the progression. But, we'll get there.
Chris Ouellette: 16:35Yeah, we will get there. So, hold. This will have to be a pause. I'm hearing tons of feedback and echo when I speak.
Liz Ouellette: 16:42 I don't.
Chris Ouellette: 16:46Okay, now it's not there, so I don't know if you turned your volume down. It's interesting. Anyways, but back to your comment, and obviously we'll have Mark cut that out, but this is a live unedited version that will be where? On YouTube, right?
Liz Ouellette: 17:00It will be on YouTube, yeah. So, I want to go-
Chris Ouellette: 17:03Hey, hey, no, hold on.
Liz Ouellette: 17:04Whoa, whoa, whoa, whoa. You paused, and then you lost the flow.
Chris Ouellette: 17:07 I was going to say something.
Liz Ouellette: 17:08Okay.
Chris Ouellette: 17:11 I think what also hit me really hard in terms of what CMT is, is this was years ago, I think probably in 2014 or so. I think that's when I joined the board of the CMTA, and I went to a conference in Boston. That was my first conference. So, I'd been kind of exposed to what CMT is with Yohan, not really engaged with anyone else that had CMT and would read stories, positive and negative, et cetera. But, I'll tell you, going to this conference in Boston, and you were there, and I can totally remember walking out of there that I now have a much better appreciation and understanding of CMT. A lot of things, if you're not engaged with CMT, I remember the first thing I did. I meet someone over at a table getting coffee, and I go to forcefully do the American awesome-
Liz Ouellette: 18:09Handshake.
Chris Ouellette: 18:09Manly handshake, and I grabbed that individual's wrist, and I'm serious, I felt like I broke their wrist. They just couldn't really return that handshake that I was so accustomed to and brought up doing in terms of a standard greeting. Then, I looked around the room, and I could see mothers or daughters together in wheelchairs or people having difficulty walking, et cetera. It was really, really mind blowing. I think that was really the turning point for me, that not only through our family and Yohan, but really starting to think about what else can I do to give back to this community? And, that really prompted a lot of different actions, further involvement for me in the board, more engaged, I think, with Yohan, and as we'll talk about is that leaning into which I'll say, our ninth annual coming up in August Cycle4CMT fundraiser that I'm really proud of that's raised over $1.7 million for research. That story in itself, which leads to a number of different topics, is between you and I, is how that fundraiser got started, right?
Liz Ouellette: 19:25Right, and before you go into that, I just want to say I'm looking at that picture in back of you, and I see you and Yohan. Yohan was here in Vermont, and I believe there's always a silver lining in every situation, any situation that's tough. The silver lining is that you and Yohan have forged such a strong relationship. He thinks the world of you, and I can't thank you enough for getting involved, because we felt pretty alone in this disease. For you to come out and spend so much time and energy and get the word out and talk about it and understand it means the world to me. But, it also means the world to Yohan, and I can't thank you enough. Really, he was here, and you guys went to breakfast. He goes, "I think I just want to be with Funcle Chris," fun uncle. And, you guys just laughing in sync, it just means the world to me. So, thank you for being involved, and I wish more families would get involved in the lives of others with CMT.
Chris Ouellette: 20:29Yeah, well, there's that echo again. I do. I love him. He's so awesome. We have such a great relationship, a lot of respect for him. I can't imagine not doing some of these things. I think too that that relationship with Yohan and the connection to CMT has also prompted my dedication to CMT, not only for him, but as I'm more engaged in the community, with the three plus million people worldwide, and really trying to think of how we can reach those individuals, how we can spread awareness, and what more we can do any way possible. And, the key is funding research, finding a cure for this disorder at some point in time. I do agree with you, Liz O. I think at some point, we will get there. And, you and I were talking about it this morning. The CMTA is a relatively small association. I think we've committed well over $10 million in research to date, but it takes so much money, right? It takes so much money just to get to clinical trials, and then the failure rate of clinical trials is very high. But-
Liz Ouellette: 21:40 I think the statistics were it takes between 400 million and one billion dollars to bring a drug to market. But, that doesn't mean the CMTA has to put that much in. We have really attracted pharmaceutical companies and biotech companies. There are more people today working on CMT than ever before, and it will only keep increasing. So, there's a lot of hope if we can get them to get more involved or we have something very promising. They can take that and bring it to market, because they have the big dollars, right?
Chris Ouellette: 22:11Exactly, and going back, Liz O, too, I do want to talk about the inception of the Cycle4CMT fundraising.
Liz Ouellette: 22:19Oh, yeah, let's talk about that Bahamas trip.
Chris Ouellette: 22:22Bahamas trip, and folks, listeners, we'll touch base a little bit upon Liz O and I in terms of our relationship, but what we would do as a family I thought is very important is to travel at least once or twice a year, which I don't say that lightly, very fortunate that we were able to do that. And, I definitely do not take that for granted.
Liz Ouellette: 22:45Can I say something?
Chris Ouellette: 22:45Yeah.
Liz Ouellette: 22:45 I just want to say that your kids had to follow a strict schedule for school, but we would just take Yohan out of school, because early on, we decided that seeing the world is educational, and we would do as many trips as we could. Because, honestly at the time, and we still don't know what his capabilities will be in the future. And, I'm really, really glad we did that. And, we did take him out of school. Sometimes, he had homework and everything on vacation, but what he learned and the experiences he had, it's just incredible, and we'll never get those back. So, I'm so fortunate to be able to have done that with him, really.
Chris Ouellette: 23:25Yeah, it's cool. And, the fact is right when we would travel, Yohan, he'd do a lot of things. Then, as I stated earlier in this podcast, I would notice he would be able to do less items. He would still have a great time on vacation, but our focus turned a little bit to what was he capable of doing. And, it hit me, and it was 2014. We were in The Bahamas, me, you, Yohan, my wife, Mia, our son, Warren, and daughter, Lila. And, we are sitting there in a Starbucks having coffee, and I was just looking at Yohan, because his feet were all scraped as he was walking around the pool. His water shoes, he had-
Liz Ouellette: 24:17Well, the day before, because I'm so scattered, I got there a day before you and left the day earlier, because I messed up the schedule and the days.
Chris Ouellette: 24:26 I forgot that.
Liz Ouellette: 24:26So, that first day we got there, I'm like, "Let's go in the pool." And, we had these water shoes. Since he has pinky toes up in claw, we put holes in the pinky toe, and he was out there. He was in the pool and the lazy river, walking all around, and he got out. Since he has no feeling in his feet initially, he looked down. His toes were raw. He had scraped all the skin off his toes, and then the pain set in. That set us up for a limited, limiting vacation, and it was awful.
Chris Ouellette: 25:01Yeah, yeah, no, I remember that. So, we're sitting there having coffee, and I remember I had just started cycling at that point. I started chatting with you and with everyone there, I said, "What more?" It was going in my mind actually, before I expressed that. I was thinking, what can we be doing, right? I don't want to just sit on the sidelines. There has to be something we could do. Thank God, you were very knowledgeable, because you were engaged with the CMTA and talking about research. I started to think, hey, maybe we put on a cycling fundraiser. And, I have never done any fundraising. I think maybe you were engaged in some fundraising.
Liz Ouellette: 25:42Oh, yeah, I did.
Chris Ouellette: 25:43Maybe it was through branches and things like that, but I was totally new, new to biking. And, I remember saying, "Well." You asked me what my thought is. I was like, "I don't know. I just want to tell maybe 10 of my friends, and we'll try to raise some money, and I'll go down [inaudible 00:25:59] Vermont and sit on the beach afterwards, and we'll cook some hamburgers and have a beer or so. Maybe we'll raise a couple hundred dollars, and I can start there. Then, with the sister/brother team, with your energy, and I think that translated to my energy where, well, that's not enough, right? What can we do? And, behold, we launched the first Cycle4CMT event in October. It was October that first year in 2014 in Vermont. It was cold.
Liz Ouellette: 26:30It was cold.
Chris Ouellette: 26:31But, it was cool, because we had probably 80 plus participants, and that event was more kind of family and friends oriented. I went out and I posted some cycling routes, and I had these little tiny signs on the side of the road that had arrows to go right or left. I didn't realize, well, you're probably at times going downhill, could be going 25, 30 miles an hour. Maybe you won't. And, people didn't even see the signs. Everybody went off course.
Liz Ouellette: 27:01Remember, Kevin Tibideau, he left, and we didn't even know where he was. And, he came back miles later, not in shape or anything.
Chris Ouellette: 27:09Totally.
Liz Ouellette: 27:10But, you know what's great is everybody was laughing about it.
Chris Ouellette: 27:12They were.
Liz Ouellette: 27:12Everybody understood. That's great. There were two people with CMT, and fast forward, if you go to the eighth annual, we have a lot of people with CMT attending, walking, cycling. It's really become quite big, and we have an event this year in Wisconsin. Then, we have, well, not an event. We have a ride in Wisconsin, and we have a ride in San Francisco and people doing their own thing. So, it's really expanding, and it's really exciting.
Chris Ouellette: 27:42Yeah, and it's cool to reflect back, thinking, sitting in the coffee shop, talking about a fundraiser, and where we are today. As I reference, that has just grown. The attendance, we usually at the signature event in Vermont, which is now always the Sunday prior, the week prior to Labor Day, we usually have about 200 plus participants. There's new faces every year. There's more people coming that have CMT. People go out for a ride. We have a great breakfast. We have a full catered meal. We have live music. We enjoy some local craft beer and cider. We always try to bring in researchers, our leading scientists to talk about where we are in the research front. The cool thing is then we just have a great silent auction. That's very powerful here in Vermont, right? The community is so engaged. Probably, we've had at times 100 silent auction items, ranging from people donating skis, to hiking shoes, to biking jerseys, to gift certificates, to hotels, and you name it. That's a fun, but not an easy feat to obtain those silent auction items.
Liz Ouellette: 28:58No, the Cycle4CMT is really a lot of work, and every year after the event, we're just like, "Should we do this next year? It's taking so much time." And, what I remember is you have people like Paul Kang and Stephen Lee coming from Washington and Connecticut and talking about little Juliana who died at five years old from CMT. It's very rare to die from CMT, but it happens. Stephen flew all the way here, and then we had the interns, Emily and Erin.
Chris Ouellette: 29:33They're awesome.
Liz Ouellette: 29:33They both have CMT, and they're so, so motivational and inspirational and just great young women. Then, when we go, "Oh, my gosh, we're so tired." You want to tell the story of Riley, Riley who came up to you?
Chris Ouellette: 29:49Oh, boy, I'm serious, folks. I'm sure a number of you have done fundraising. It's not an easy feat, and I'm not saying that to give Liz O and I credit at all. Like Liz O said, every year, we're like, "Okay, that was the last event."
Liz Ouellette: 30:07That's the last one.
Chris Ouellette: 30:07"That was the last one. We're totally exhausted." I know when everyone leaves the event on Sunday, we're laying on the grass, and now we still have to take everything down. No one can speak. We're totally tired. But, to me, that's part of it, right? You have to have some blood, sweat, and tears. These things shouldn't be easy to begin with, but Riley, who's so awesome, and-
Liz Ouellette: 30:30He's from Vermont, Essex.
Chris Ouellette: 30:31He's from Vermont, and how old is he now, Liz O?
Liz Ouellette: 30:33 I don't know. He must be 13, 14.
Chris Ouellette: 30:35Yeah, so Riley, and I don't know how this got out there, but he at the time, maybe he was eight or nine. And, I'm talking to someone at the event, and Riley pulls on my shirt, and he says to me-
Liz Ouellette: 30:51And, wait, wait, wait. So, Riley's pretty affected by CMT.
Chris Ouellette: 30:52He is.
Liz Ouellette: 30:52He's a CMT type four, so that's two genes causing CMT.
Chris Ouellette: 30:55Yeah, he's in a wheelchair.
Liz Ouellette: 30:58Now, he is is.
Chris Ouellette: 30:58Or, now. He was wearing braces, I think at the time, needed assistance with walking, and made it over to me, and pulled on my shirt. And, I looked down at this little, little boy with his glasses and big eyes. He said, I think he called me Chris, which was great, "Chris, someone said that this might be the last year that you" ... Sorry, folks. This is my emotional point. He said, "I heard you might not do this event anymore." And, I looked at him in the eyes, and I could see his condition. I just was like, "Riley, this will not be our last event." It just showed me how important that event was to him and to others. I think that has been not only with Yohan, but the CMT community and folks like Riley, that has driven that kind of tiredness and not wanting to do the event into passion and dedication to continue to move forward, and even though we don't have a cure today, to stay positive.
Chris Ouellette: 32:14When you can see someone with CMT really have the opportunity to enjoy that event, and as I always say to Liz O, that event, as I reference, is not feedback for Liz O and I in terms of what we do. That event is for people with CMT, and that is why we do it. It's their environment. It's their voice. It's giving them updates on research and doing whatever we can to spread awareness and help raise the necessary money so we can continue on this research path. So, that was inspirational, and it's very interesting. It's been probably five years, and every time that story comes up, I just start crying.
Liz Ouellette: 32:57Well, and then Riley spoke at one of the events, and hopefully, he'll be at the event this year. He probably will. His mom [inaudible 00:33:04] is a good friend. The other thing is he attend attends Camp Footprint, and that's been life changing for him, but I just remember talking about ... He didn't want to lose the ability to walk, and he has. And, that's the progressive nature of CMT, and we need to stop CMT. We Need to stop the progression.
Chris Ouellette: 33:24The other thing that hits me at these events as well is the positive energy.
Liz Ouellette: 33:29So fun.
Chris Ouellette: 33:30CMT can have a major impact, however I just find such a positive environment with those that do have CMT. It gives you encouragement and strength to continue to try to fundraise and find a cure, because it's just such an awesome community. You don't find people that are sitting there, looking for sympathy. They are talking about what they have accomplished and what they can do. Some folks say, "Hey, if I had a chance" ... I don't know if I would say ... It's hard, right? Some folks would be like, "I don't know if I'd say. Obviously, I wouldn't want CMT, but CMT has really made me into this incredible person." And, that is very heartfelt, warming, and touching to me, to hear those stories.
Chris Ouellette: 34:21So, it's a great environment. And, folks, this is definitely a pitch for the Cycle4CMT event as well. If you have a chance to get to that signature Vermont event, you'll be blown away by it. It is beautiful. It's a great environment. It is a lot of fun. It's a great cause. On top of that, as Liz O said, there are rides going on throughout the country. You can go to the Cycle4CMT.com website, learn all about the event. But, again that event is for you, and if you can get out there and help fundraise and spread awareness, that's our goal, and we'd love to have you.
Liz Ouellette: 34:58And, this comes back to what I was thinking. You said people are so positive, and we have such a great group of people who Cycle4CMT. But, I think part of that is talking about giving back, instead of sitting there and waiting for somebody else to do it. Get involved in any way you can, so you're part of progress. You're part of the progress. You're going to be part of our solution. You, your money, even if it's just a little bit, if everybody just a little bit, we'd probably have a cure by now. So, honestly, I just think I can't sit by and watch Yohan progress or my friends, Bethany, progress, or Jeana, or people I've come to love, and Kenny B. I can't do that. I have to be involved, and all these people are involved, and it feels good to give back. And, it feels good to see progress when we do.
Chris Ouellette: 35:51Yeah, yeah, totally. So, Liz O, you're talking, and I'm just thinking about our relationship, right? We don't see each other that frequently, maybe a couple weeks each year. Hopefully, that'll continue to grow as we-
Liz Ouellette: 36:08You're too busy. You're too busy. Every time I call, you're like, "Yeah, okay." And, I'm like, "Hey, so" ... I've got to go. Bye. Got to go. Bye. Got to go. Bye.
Chris Ouellette: 36:14But, you're busy as well, and it's interesting. It is a good team. You and I are really two totally different people, but there are a lot of common characteristics as well. I'm going to just give a little bit of feedback, folks, to get you the details of Liz O. And, I would say number one, lot of fun, right? Always laughing, very, very intelligent, very well spoken. We've already talked about how she gives back, but on the side, she's totally scattered, totally scattered. I am always like, "She makes it through the day. She does. I don't know how she does.
Chris Ouellette: 36:56And, here's a great example. What does she do yesterday? Comes down to camp. She's like, "I am going swimming." I'm like, "Perfect. Go swimming." So, she puts her bathing suit on. I'm doing something on my iPad, and she comes back out of the lake, and she's like, "I can't see anything. I can't see anything." I'm like, "What?" She goes, "Did I just jump in the lake with my glasses on?" I'm like, "I don't know. I don't know." So, I'm like, "Here we go." So, I go out in the lake. I can see these footprints in the sand. I go way out there, and sure enough, there-
Liz Ouellette: 37:28I'm trying to help, and I can't see anything.
Chris Ouellette: 37:30Yeah, she can't see anything anyways.
Liz Ouellette: 37:31I'm stirring up all the sand.
Chris Ouellette: 37:32Yeah, so there are glasses on the bottom of the lake, which I recover for her and continue to move on. But, that is not a surprise. There are probably five to 10 of those items that go on through the day. Can't find her car keys. Can't find her phone.
Liz Ouellette: 37:45Never.
Chris Ouellette: 37:46She goes on a trip with Gilles, who is our chairman of the CMTA, and what does she do? She loses the car keys in the desert, and he's out horseback riding. She's going for a hike, and so thank God, she posted her walk on this app called Strava, and Gilles followed it on Strava and found the rental keys. But, my point is she makes it through in that type of environment, and she's not scattered on other things. But, those type of things, which aren't real important to her, you know what I mean? There's other things, and she gets through it. And, I am a little bit different. I'm not saying I'm not scattered, but I'm a little bit different.
Liz Ouellette: 38:28No, no, no. You're very different. Listen to this. (singing). I can't even remember the tune now. (singing).
Chris Ouellette: 38:30M.A.S.H.?
Liz Ouellette: 38:30No, maybe it is. But, I meant The Odd Couple. We're sort of like-
Chris Ouellette: 38:43Oh, that is The Odd Couple.
Liz Ouellette: 38:43Oscar and Felix.
Chris Ouellette: 38:43Good point.
Liz Ouellette: 38:47I'm Oscar. You're Felix.
Chris Ouellette: 38:48Totally.
Liz Ouellette: 38:49So, you're very organized. You're very driven. And, you are very structured, and I am not. I am driven. That's what we have in common, but you've always been like that, though. I just remember waking up in the morning, and you were nine. What nine year old looks outside of the window and goes, "Oh, my God, the grass needs to be mowed." And, you get out there, maybe 10. You're mowing the grass, and I'm like, "What grass? Who cares? Have it weeds." It's so interesting, and I remember I was kind of nervous about spending the night at camp here with you, because-
Chris Ouellette: 39:33Well, I was nervous as well.
Liz Ouellette: 39:34 I know if I have any crumbs on the counter, he's going to freak. I don't know if I'm doing the dishes right. I'm just trying to respect your space. The other day, and I felt bad about this afterwards, but I don't think of these things. I get a box. We're over at your house. You have white furniture, which I think is stupid.
Chris Ouellette: 39:51She gets the box out of the garage, folks, my garage that has been ... It's all dusty and things like that.
Liz Ouellette: 39:56It's not dirty.
Chris Ouellette: 39:57What does she do? She's like, "Can I have use this box to ship items?" I'm like, "Sure." So, then what proceeds to happen?
Liz Ouellette: 40:04Then, I take the box and put it on the white furniture and start packing the box. He goes, "Could you please take that box off the furniture?" I'm like, "Why?" I had no idea. It didn't even dawn on me that the box was dirty or had dust on it. Then, a little aggressively, I kind of rubbed the box into the couch.
Chris Ouellette: 40:26Yeah, that was very nice.
Liz Ouellette: 40:26No, that wasn't. It was just like it annoyed me, but I apologized later. I should just taken it off, but I don't think of these things. We grew up just having a blast and jumping in mud puddles. What did you tell me earlier about the bathtub?
Chris Ouellette: 40:44Oh, yeah. No, it was great. I think about growing up, right? And, this comes back to mom. Mom was very structured, very committed, high driving, tons of energy. Even today, the energy is off the charts compared to us. Education was really important to her, the whole aspect of giving back, realizing what you have, and just throwing that in there. Not to digress, but it just made me think, even at Christmas time, I remember as a little kid being in our station wagon, and mom would go buy a couple bikes or something and toys. And, we would drive through the old north end in Burlington, which was somewhat of a depressed area.
Chris Ouellette: 41:25She would see a child or a family and stop, and we'd get out and give them these gifts. But, yeah, very, very structured, but also flexible. It made me think, she rarely got mad. I remember with our brother, Anthony, when you're younger, you're taking baths together, and him and I are just always creative. The bathtub is filled, and we're pretending we're on a ship, and we're sliding down the bath, and water is overflowing out of the tub and going on the floor. Mom's downstairs, and water's coming through the ceiling and just, oh, okay, great. They're having fun. Can you guys stop that?
Liz Ouellette: 42:07They're having a good time.
Chris Ouellette: 42:07 I grab blankets, and then I'd be sliding down the stairs and rip the carpet and whatever and smash into the wall. They're just like, "Oh, the kids are having fun again." So, that was pretty cool, right?
Liz Ouellette: 42:17But, I think it was. It was, and we just had a lot of freedom. But, our personalities are very different and very alike. I think we're very complementary. And, you make me laugh, too. You're funny, so I like that.
Chris Ouellette: 42:31Oh, well, same. Listen, I guess, folks, it's a great relationship. Liz O, love you very much.
Liz Ouellette: 42:36Same back to you.
Chris Ouellette: 42:37It's cool, and it's really cool to have the opportunity, these things, whether it's the fundraiser, Yohan, the CMTA, has really, I think, also kept us connected.
Liz Ouellette: 42:48Absolutely.
Chris Ouellette: 42:50And, at times I wonder, I think, boy, if we didn't have that, will we still be connected? And, there's part of me that says, "I know we would. I know we would."
Liz Ouellette: 42:55We would.
Chris Ouellette: 42:55Because, there's that sense of family and appreciation for one another and Yohan and Gilles. You love our kids, et cetera, so that family aspect is big.
Liz Ouellette: 43:06It's huge.
Chris Ouellette: 43:07And, I think you said it well. I'm proud of that. I do think we have a good example of how a family can come together and strive to overcome a number of hurdles, specifically as related to CMT, right? And, there's a lot more power with more-
Liz Ouellette: 43:23That's right, it's not just me and you. Our parents, our siblings, our community, our family, everybody is involved.
Chris Ouellette: 43:29Yeah, it's cool.
Liz Ouellette: 43:29They don't even hesitate.
Chris Ouellette: 43:33That's good. I hope mom's listening, because we need her to make a big donation this year.
Liz Ouellette: 43:36Yeah, I know. This is the reason we're mentioning her. No, I'm just kidding.
Chris Ouellette: 43:41Get out your checkbook, mumsy,
Liz Ouellette: 43:42Mama.
Chris Ouellette: 43:44So, Liz O, let's talk a little bit about this podcast.
Liz Ouellette: 43:51So, this is an idea you had six years ago.
Chris Ouellette: 43:54Years ago.
Liz Ouellette: 43:55Yeah, and people were starting podcasts. We should do a podcast. At that time, I'm like, "How do you even do a podcast?"
Chris Ouellette: 44:03 I don't know.
Liz Ouellette: 44:03Now, everybody has a podcast, but you had this idea, and the board of directors actually supports us 100%, love the podcast. They love the podcast. And, thanks to Mark, it's pretty easy. And, I love doing it with you. And, we have interviewed some people that are just amazing. Every single person, and so the CMT4Me podcast, and you came up with the name, which you're very creative also.
Chris Ouellette: 44:30And, CMT4Me. And, again, it's another ... And, keep in mind, don't just push yourself aside on this one. This is a collaborative. That's what's cool, and you're just making me think, whether it's back in Bahamas. I'm like, "I'd like to do a fundraiser," but working with you continues that creative. And, where do we go? Because, you don't want to do anything small, right?
Liz Ouellette: 44:53No, I can't.
Chris Ouellette: 44:54You're like, "Okay."
Liz Ouellette: 44:54It's either 100% or zero.
Chris Ouellette: 44:56Exactly.
Liz Ouellette: 44:57That's a problem, but that's the way I am.
Chris Ouellette: 44:59Exactly, so we work well together. That was really again thinking about, with my experience with CMT individuals is that, how do we give more individuals with CMT the platform and voice? As our intro says, it's really their inspirational stories. How can we get more people with CMT connected to one another so they feel they have support? It goes to the same thing with the fundraiser. It's a platform, and this podcast is a platform for individuals to express themselves, tell their stories.
Chris Ouellette: 45:37It's been cool, because there's been some people that have listened to the podcast that then have reached out to another individual who we interviewed. Or, they're new to CMT, and now they have resources. So, I feel really good about that. One thing I think we work hard on too, and someone made me think about this, was you don't always want to just focus on the negative, right? Oh, here's all the negative things going on. No, we're realistic, and we talk about the facts, but there are so many great stories about overcoming challenges and sharing information. On top of that, the big goal is spread awareness, right?
Liz Ouellette: 46:16That's right.
Chris Ouellette: 46:17And, we've got to spread awareness. That, I think, ties into how we can raise more money for research, if we have more and more people engaged.
Liz Ouellette: 46:24So, I was just blown away yesterday, and I actually took a video of you soliciting merchandise or a gift certificate from a restaurant. You are such a natural. You just go in there, and I just watch you. Usually, this is our tactic. We walk in a store. I go shopping and buy something. Then, Chris starts talking to the owner about the cycle event, what CMT is, and tries to get a gift certificate while I'm checking out. Usually, the answer is yes, but you're so talented at it. You just have no inhibition.
Chris Ouellette: 46:57Wow, that's cool. Thanks for that feedback. But, you participate as well, and it is a strategy. I'm like, "Liz O, you go buy something, because if you buy something, then how can they turn us down?" So, it's great.
Liz Ouellette: 47:07Then, if I don't see anything, you're like, "Well, I like this. I like that.
Chris Ouellette: 47:09Right, so I usually walk away after her visit, multiple pairs of pants, shorts-
Liz Ouellette: 47:14Shoes.
Chris Ouellette: 47:14Shirts, shoes, you name it. It's awesome.
Liz Ouellette: 47:19It works.
Chris Ouellette: 47:19But, it is, it's fun, and it's interesting. I always look at the faces of someone who we're trying to solicit, and you go, "CMT," and they're like, "Okay." And, then you keep going. This individual yesterday who finally came around, and you learn-
Liz Ouellette: 47:36 I didn't think he was going to.
Chris Ouellette: 47:36 I didn't either, but then you learn-
Liz Ouellette: 47:36He was clearly like, "Whatever, whatever."
Chris Ouellette: 47:36You learn, things come up as you keep talking to people. What did he say? I said, "Do you bike?" And, he's like, "Well, no, I have a motorcycle out there." Then, that's like, "Oh, well, I used to ride motorcycles. I had a Honda Shadow 500. Oh, that's a great bike."
Liz Ouellette: 47:48So good at making those connection.
Chris Ouellette: 47:48So, you make these connections. Then, you talk about, which I think is important, it's that statistic of ... I always forget. What is it, one in 2,500 or 2,800 have CMT? And, relate that back to say Burlington, Vermont or Vermont, population of 647,000, right? So, when you say, "Hey, we were born in Burlington. We're native Vermonters, and by the way, you may not know it, but there's over 200 people in our community that have this incurable disorder at this point." They start to think, and I find a lot of times, after those discussions, it's hard for them to say no. And, I don't feel that they feel the obligation, but I think they understand. And, it's that passion. And, Vermont is a really community driven state that is always looking at ways to give back. That also makes it a little bit easier, but then people feel connected, right? You've got to bring them in in terms of how they can help us towards our mission.
Liz Ouellette: 48:53And, what's really unique here is the community is important. The community feel, and community comes together when you're in need. Vermont and the surrounding areas are just great for that. I just miss that. I miss it a lot.
Chris Ouellette: 49:04Yeah. Yeah. Well, it's good. It's good. We're on a good path, folks. Liz O, are we coming to the close of this podcast? I think we kind of covered our topic.
Liz Ouellette: 49:17Yeah, we're probably just talking. I don't even know how long we've been talking.
Chris Ouellette: 49:17People are probably like, "Oh, my God, will these guys shut up?"
Liz Ouellette: 49:17Oh, my God, are they going to stop talking?
Chris Ouellette: 49:21Right. But, folks, listen. For those of you listening to this podcast, this is our opportunity. We're not going to do our standard close, but to really thank you. Thank you for listening. Back to Liz O's comment about doing your part as well, if you can tell folks about this podcast, if you can direct them to the Cycle4CMT fundraiser or to the CMTAUSA.org website, we need all hands on deck here.
Liz Ouellette: 49:55Back to the ship in the bathtub reference.
Chris Ouellette: 49:55 I know, I know.
Liz Ouellette: 49:55All hands on deck.
Chris Ouellette: 49:56And, Liz O, maybe some of our listeners can help us if we spread this right. What's one of our goals that we'd love to do someday, is kind of-
Liz Ouellette: 50:10Oh, my gosh, we would love to be-
Chris Ouellette: 50:11When you think of the news, and what would we love to do? It'd be sweet.
Liz Ouellette: 50:14I'm so sick of hearing negative things. It's all negative. So, I see this-
Chris Ouellette: 50:20The news? You mean in the news?
Liz Ouellette: 50:22Yeah. Yeah, everything is just negative and worrying and worrisome. Let's get a feel good story like us helping the CMT community to find a cure for this disease and talk about all the people that do such incredible things, despite the limitations that CMT imposes. Wouldn't it be great, Good Morning America? Or, there's so many, so, so many programs that we would love to be on.
Chris Ouellette: 50:48Right, CBS News. Maybe we could be interviewed by someone who has a podcast now.
Liz Ouellette: 50:53That's right.
Chris Ouellette: 50:54That has a greater reach.
Liz Ouellette: 50:58Guys, we want to go national here. We want to go international, actually. We'd like to go international.
Chris Ouellette: 51:06That'd be cool.
Liz Ouellette: 51:06Get the word out about CMT. We work with people internationally, so let's get this on. Let's get going.
Chris Ouellette: 51:11Yeah, let's do it.
Liz Ouellette: 51:11Do it.
Chris Ouellette: 51:15Yeah. Liz O, have you heard of those Sprinter vans?
Liz Ouellette: 51:20No.
Chris Ouellette: 51:21No, okay. Well, they're these cool vans you can put your bike in. People are buying these things now and throwing their skis in there and bikes and whatever. But, it made me think, wouldn't it be kind of cool at some point where we could have as your background as the CMT4Me podcast logo on the side of this Sprinter van, and we tour the country and go to these areas and interview people with CMT. Wouldn't that be sweet? That'd be fun.
Liz Ouellette: 51:48Yeah, it would be fun, and we'd meet so many people. Now, that's a story. Now, you're cooking.
Chris Ouellette: 51:54What's it? Who's the-
Liz Ouellette: 51:55Alan Jackson?
Chris Ouellette: 51:58No, no. Yeah, yeah, that's Alan Jackson.
Liz Ouellette: 51:59CMT came out, and I'm like, "Chris and Gilles, you guys have to bike there. You have to bike there, and we can make a story." Chris was like, "I'm not biking there."
Chris Ouellette: 52:10No, it made me think of Al Roker, right? He goes on the road sometimes and travels in this van and does the weather in all these different areas of the country. We could do the podcasts in all these different areas of the country.
Liz Ouellette: 52:21Yeah, let's do it. You have to just stop working.
Chris Ouellette: 52:23Yeah, okay, that sounds great. I hope people from-
Liz Ouellette: 52:23Hey, talking about the podcast-
Chris Ouellette: 52:29 I hope people from where I work are not listening to this. No, just kidding.
Liz Ouellette: 52:34So, about the podcast, if you want to leave a review, and we'd love to have your review, Apple Podcast has a place for that.
Chris Ouellette: 52:42Awesome.
Liz Ouellette: 52:43Yeah, so I just wanted to throw that out there, and it's available on Spotify, Apple, all the major podcast outlets. You can hear this podcast, CMT4Me.
Chris Ouellette: 52:55Awesome. All right, Liz O, time to go. That's a wrap, sis.
Liz Ouellette: 53:01All right, thanks, everyone for listening.
Chris Ouellette: 53:03Yeah, thank you.
Liz Ouellette: 53:04Cycle4CMT.com or CMTAUSA.org. If you have an interesting story, let us know, info@CMTAUSA.org, info@CMTAUSA.org. And, watch us on YouTube. We're live.
Chris Ouellette: 53:23There you go. All right, folks, take care.
Liz Ouellette: 53:25All right, bye-bye.
Chris Ouellette: 53:25Thanks for listening. Bye.
Liz Ouellette: 53:26Love you, bro.
Chris Ouellette: 53:29Later, babe.
Liz Ouellette: 53:30Love you.
Chris Ouellette: 53:32Keep it going, babe.
Liz Ouellette: 53:34Love you, bro.
Chris Ouellette: 53:36Love you, too. Later. Bye.
Liz Ouellette: 53:38[inaudible 00:53:38] how to stop this.
