Eleven years ago, late CMTUS founder, Gretchen Glick and I talked about starting the first ever CMT Awareness Week. The 2 organizations (CMTA and CMTUS) worked collaboratively to get the word out about CMT. At the CMTA, I had posters created, wrote email blasts, and asked our branch leaders to spread awareness through groups across the country.
This first CMT awareness week was so successful, that the following year, we dedicated an entire month to CMT awareness, and somehow, Gretchen got American radio host, Shadoe Stevens, to do a PSA about CMT. Listen to this 29-second clip from 2012:
Eleven years later, it is still hard to explain CMT. I read Kenny Raymond’s latest blog post where he addressed this issue, and he brilliantly defines some of the challenges of explaining what CMT is. Thanks, Kenny B. Raymond for putting your thoughts on paper for reflection. How do you explain CMT? Before you answer, read Kenny’s article and then, come up with your elevator speech and share it in the comments. I’d love to hear your ideas!
Kenny Raymond at Cycle 4 CMT, VT
We All Know the Drill
Exploring the Burgeoning Question: “What is CMT?”
by Kenneth Raymond
“Why are you wearing shin guards? You play soccer?”
“What’s wrong with your hands?”
“What’s wrong with your legs?”
Etc., Etc., Etc.
We all know the drill. The answer to the seemingly never-ending questions involves those three lovely letters, C-M-T. And then, the proverbial follow-up, whether it’s a random person in public or even a healthcare provider, requires us to dig deep in hopes of giving them a straight-to-the-point answer that’ll leave them knowing just enough about our disease to remember the name should they hear it again, all the while hoping we give them enough information to know it’s not a tooth disease and that it has nothing to do with sharks.
What is CMT?
“What is CMT?” I’m always trying to improve on how I answer this question. I can easily rattle off some quick factoids, such as CMT is a heterogeneous group of inheritable peripheral polyneuropathies whose name comes from the three doctors who first described it in 1886: Drs. Charcot, Marie, and Tooth; and this name, CMT, has since become an umbrella term that refers to many different inheritable sensory and/or motor neuropathies. Quick and to the point, right? This doesn’t say much about what the disease is though.
Medically, CMT is a genetically caused neuromuscular disease—neuro because peripheral nerve, muscular because the disease in the peripheral nerves causes symptoms in muscles. Genetically caused because each subtype is caused by a mutation in any one of many different genes.
Medically, CMT is an inheritable multisystem neuromuscular peripheral polyneuropathy. Inheritable because each of the genetic mutations that cause CMT are inheritable. Peripheral because CMT is a disease of the peripheral nerves. Polyneuropathy because CMT affects more than one peripheral nerve at a time (poly), as opposed to only one peripheral nerve (mononeuropathy). Neuropathy because peripheral nerve disease. Then, multisystem because CMT can affect hearing, vision, breathing, genitourinary, and much more, in addition to feet/legs/hands.
Statistically, CMT is the most commonly inherited neuromuscular disease nobody has ever heard of. This one is a weird dichotomy unto itself. CMT is a rare disease by every statistical and modeling measure. At the same time, when it comes to inheritable neuromuscular diseases, in totality, CMT is the most commonly inherited. In this context, common and rare can peacefully coexist even if it seems like they shouldn’t.
These above are just a select few examples of how CMT can be described. All of these descriptions are fine and dandy, but not only are these difficult to remember, firing off any of them to Jane Q. Public tends to render confusion about a disease they’ve never heard of. Is there a viable solution—a grand unifying answer, so to speak?
The Elevator Speech
I’m often asked to give my “45-second elevator speech” on what CMT is. My response typically hits several talking points and is usually along the lines of “CMT stands for Charcot-Marie-Tooth disease and is a rare inheritable neuromuscular peripheral neuropathy named after the three doctors who first described it more than 130 years ago. Although rare by definition, affecting only 1 in every 2,500 people, and totaling about 3 million people worldwide, CMT is the most commonly inherited peripheral nervous system disease. CMT causes the peripheral nerves to stop working correctly; and this leads to muscle weakness and atrophy, joint changes, difficulty with walking, and hand issues. Some who have CMT have breathing issues, hearing impairment, vision problems, bladder issues, and GI issues. The disease progressively worsens over one’s lifetime, there is currently no treatment, the disease can’t be cured, and it affects everybody very differently from one another.” Sometimes, people will ask follow-up questions. Other times, we part ways with only a, “whoa,” and maybe they’ll recognize the name the next time they hear it.
My “elevator speech” has been a go-to for many years, having evolved only slightly since my initial CMT diagnosis. It’s very easy for me to throw it out there anytime I’m asked. Does it say enough about what CMT is as a whole that it could be adopted by anybody who needs a quick go-to description? Until a week ago, I thought it did and I thought it could. What changed?
Bicyclists as a Catalyst
Kate Lair and Kenny Raymond
For the first time, I attended the Charcot-Marie-Tooth Association’s Cycle 4 CMT fundraising event held annually the last weekend of August in Charlotte, Vermont. This event is huge and people from all over the place, not just locals, attend and/or participate. I met and spoke with many CMTers. Some CMTers were cycling participants riding a treacherous 40-mile course through the western Vermont mountains even though there were shorter less-challenging routes. Some CMTers were there to participate in non-cycling activities. Some were event volunteers. Some were parents who do not have CMT, but their child does (or children do). Some were members of the CMTA leadership and social media teams.
Some of the CMTers at Cycle 4 CMT used wheelchairs, canes, walkers, etc. Some CMTers wore leg braces. Some CMTers had breathing issues. Some CMTers had severely twisted and deformed feet. Some CMTers had hearing loss. Some CMTers had speech impairment. Some CMTers had <fill in the blank>. I’m confident there were many hidden symptoms that went unmentioned and unnoticed. Without a doubt, it was the most diverse single-source representation of what CMT is that I have experienced in-person. As I spoke with CMTers and as I looked around, it became apparent that my go-to elevator speech is grossly inadequate and under-represents what CMT is.
It’s well established that CMT can and does affect everybody differently, and even within the same family. CMT can cause many things. Not everybody who has CMT will experience all symptoms of CMT. The mix of symptoms, the severity of individual symptoms, the rate of disease progression, and the overall disease severity can be quite different for every CMTer. What one CMTer experiences cannot be used to gauge or to predict what the disease will be for the next CMTer, regardless of subtype. It’s one thing for me to read it, and another for me to witness these concepts firsthand.
Is There a Solution for the Question?
What is CMT? The answer to that question, as it turns out, is quite different for every CMTer. My CMT is different than somebody else’s CMT. CMT, for me, looks quite different than does CMT for another. CMT, for me, is twisted, contorted, crooked feet that have led to tendons tearing requiring corrective reconstruction surgery of my right foot (and upcoming surgery for my left foot). CMT, for me, is weakened hands that easily cramp, a knee that used to dislocate before corrective surgery, bilateral hearing loss, unrelenting fatigue, chronic whole-body pain, progressively weakening upper leg muscles, spine changes (kyphoscoliosis), premature degenerative joint changes, speech/vocal difficulties, and for me, CMT is breathing issues. For another CMTer, CMT is wheelchair dependency, is an inability to hold and use a pen or pencil, is 24/7 mechanical ventilation via tracheostomy, and is total deafness. Yet, for another, CMT is none of these things, or a is a combination of these.
What is CMT? True to CMT, there isn’t a one-size-fits-all answer. The answer to the proverbial question is unique to the CMTer who is asked. The answer is even unique to the healthcare provider and to the scientific investigator. There are wrong answers to the question, such as a suggestion that CMT is an autoimmune disease. While CMT might share symptoms with some autoimmune diseases, such as Multiple Sclerosis (MS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) for example, CMT is decidedly not an autoimmune disease. Nonetheless, the answer to the burgeoning question is dependent on what CMT looks like for the one who’s giving the answer.
If you were to line up ten random CMTers—somebody who has CMT or somebody whose loved one has CMT, and ask each, “what is CMT?” each of the ten answers are likely going to be very different from one another. The differences are not born of inaccuracy or of a misunderstanding of their disease. The differences instead come from how differently CMT looks for each individual and from how each person individually experiences CMT.
What is CMT? For me, CMT is a cruel and often debilitating neuromuscular disease that looks very different from person-to-person. For me, what was once an easy answer to a complex question, or what was a complex answer to an easy question, has become exponentially more difficult to answer. As a CMTer, it’s easy to answer the question by simply describing what CMT looks like for me. As an advocate, however, I’ve learned my “45-second elevator speech,” while it gives a lot of information, is a disservice to the CMT community as a whole. The solution? I resolve to do better. I have to do better. I will do better.
About the Author
Kenneth Raymond was first diagnosed clinically with CMT1 in late 2002, at the age of 29. He was genetically confirmed to have CMT1A a year later. Kenneth has since devoted his life to studying, researching, and learning all things CMT, with an emphasis on the genetics of CMT as they relate to everyday CMTers. As a member of the Charcot-Marie-Tooth Association’s Advisory Board, Kenneth serves as a CMT genetics expert, a CMT-related respiratory impairment expert, and as a CMT advocate who is committed to raising CMT awareness through fact-based information rooted in the latest understandings of CMT. Kenneth has just published,
Charcot-Marie-Tooth Disease Gene and Subtype Discovery: The Complete Bibliography – Fall 2022 Release: A Desk Reference for the Everyday CMTer, the Practicing Clinician, and the CMT Researcher Paperback which is available on Amazon. Kenny also has an excellent website and blog to check out: expertsincmt.com
Kenneth Raymond is an administrator of several Facebook groups. He helps people with their CMT questions, especially those related to breathing and genetics. The CMTA is fortunate to have such a well-versed, well-educated Advisory Board member willing to work tirelessly for the CMTA community!
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
As kids, they learned homelessness was not someone else’s problem.
Giving back is so much more than pizza and donuts for Halloween.
Chris: One, two, three. Hello, everyone. This is Chris and Liz O.
LizO: We’re a brother/sister team.
Chris: And, on behalf of the Charcot-Marie-Tooth Association, AKA CMTA, we are coming at you.
LizO: Coming 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: Nice. We’re at our camp in beautiful Colchester, Vermont on the beach of Lake Champlain.
View From Camp on Lake Champlain
LizO: Yeah, it’s nice.
Chris: So, Liz O, guess what?
LizO: What?
Chris: This is another fantastic episode of our famous podcast named what?
LizO: CMT, the number four, me, CMT4Me.
Chris: That’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, and 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?
LizO: Me 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: That is right, folks.
LizO: Should we start?
Chris: Yeah, 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?
LizO: Well, do you want to start by saying how I got involved in the CMTA?
Chris: No, I don’t want to start there at all.
LizO: Okay, well then why’d you just ask me?
Chris: Just 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.
LizO: Oh, way back.
Chris: We’re going to go way back to the beginning. Just so our listeners know, I am currently … Actually, I’m going to be 56.
LizO: Oh, 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: Right, 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.
LizO: I should have never agreed to this podcast.
Chris : I know, I know.
LizO: Okay, let’s get going. Come on.
Chris: All right, let’s do it. Go ahead.
LizO: No, go ahead. You have this great idea.
Chris: No, 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?
LizO: Yeah, I do. I do.
Chris: And, 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?
LizO: Yeah, I think the spirit of volunteerism, it came from … I don’t even know if that’s a word, but-
Chris: I was just going to say, “Is that a word?”
LizO Cool. 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: 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-
LizO: Not 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 : Yeah.
LizO: She was always out there.
Chris: That was a full time job.
LizO: Yeah, 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: Yeah, 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.”
LizO: I remember that.
Chris: But, it was great. It was adding fun, and the people loved it.
LizO: Mom is a lot of fun.
Chris: So, 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.”
LizO: It was.
LizO: Right, 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 : Totally.
LizO: That’s where the CMTA comes in.
Chris: Yeah, 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?
LizO So, it will be 20 years in December of 2022.
2012 – Joined Board of Directors, CMTA
Chris: And, 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.
LizO: Just go with it.
Chris: 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.
LizO: So, 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.
LizO: 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: Okay, 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.
Serial Casted -short-term success
Post Surgery – Foot reconstruction surgery
Chris: Then, 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.
Skiing was a cherished moment in time.
Chris: And, 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.
LizO: It 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 …
Some of the many CMT symptoms
LizO They 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: 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-
LizO: Handshake.
Chris: Manly 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?
LizO Right, 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 and Funcle Chris 2022
Chris: 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 $20 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-
LizO: 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 Exactly, and going back, Liz O, too, I do want to talk about the inception of the Cycle4CMT fundraising.
LizO: Oh, yeah, let’s talk about that Bahamas trip.
Chris: Bahamas 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.
LiizO Can I say something?
Chris Yeah.
LizO 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.
On an unofficial school vacation, Yohan got scuba certified!
Chris: Yeah, 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-
LizO: Well, 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: I forgot that.
LizO: So, 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: Yeah, 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.
LizO: Oh, yeah, I did.
Chris: Maybe 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.
LizO: It was cold.
Chris: But, 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.
LizO: Remember, Kevin Thibodeau, he left, and we didn’t even know where he was. And, he came back miles later, not in shape or anything.
Chris: Totally.
LizO: But, you know what’s great is everybody was laughing about it.
LizO: Everybody 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.
1st Annual Cycle 4 CMT
Chris: They were.
Cycle 4 CMT 1st Annual
.
Chris: Yeah, 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 are new faces every year. There are 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.
Paul Kang gives a speech in Juliana’s honor
Juliana Snow lost her life to CMT at age 5
LizO: No, 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.
Emmily and Erin
Chris: They’re awesome.
LizO: They 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: Oh, 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.”
LizO: That’s the last one.
Chris: “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-
Riley
LizO: He’s from Vermont, Essex.
Chris: He’s from Vermont, and how old is he now, Liz O?
LizO: I don’t know. He must be 13, 14.
Chris: Yeah, 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-
LizO: And, wait, wait, wait. So, Riley’s pretty affected by CMT.
Chris: He is.
LizO: He’s a CMT type four, so that’s two genes causing CMT.
Chris: Yeah, he’s in a wheelchair.
LizO: Now, he is is.
Chris: Or, 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.
Riley Ashe and Yohan at Camp Footprint
Chris: When 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.
LizO: Well, 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: The other thing that hits me at these events as well is the positive energy.
LizO: So fun.
Chris: CMT 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: So, 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.
LizO: And, 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 going to be part of our solution. You, your money, even if it’s just a little bit, if everybody just gave 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: Yeah, 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-
LizO: You’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: But, 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: And, 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-
LizO: I’m trying to help, and I can’t see anything.
Chris: Yeah, she can’t see anything anyways.
LizO: I’m stirring up all the sand.
Chris: Yeah, 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.
LizO: Never.
ChrisO: She 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.
LizO: No, no, no. You’re very different. Listen to this. (singing). I can’t even remember the tune now. (singing).
Chris: M.A.S.H.?
LizO: No, maybe it is. But, I meant The Odd Couple. We’re sort of like-
Chris: Oh, that is The Odd Couple.
LizO: Oscar and Felix.
Chris is Felix – Lizo is Oscar
Chris: Good point.
LizO: I’m Oscar. You’re Felix.
Chris: Totally.
LizO: So, 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-
ChrisO: Well, I was nervous as well.
LizO: 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: She gets the box out of the garage, folks, my garage that has been … It’s all dusty and things like that.
LizO: It’s not dirty.
Chris: What 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?
LizO: Then, 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: Yeah, that was very nice.
LizO: No, 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: Oh, 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: She 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?
LizO: They’re having a good time.
Chris: 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?
LizO: But, 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: Oh, well, same. Listen, I guess, folks, it’s a great relationship. Liz O, love you very much.
Liz Ouellette: Same back to you.
Chris: It’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.
LizO: Absolutely.
Chris: And, 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.”
LizO: We would.
Chris: Because, 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.
LizO: It’s huge.
Chris : And, 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-
LizO: That’s right, it’s not just me and you. Our parents, our siblings, our community, our family, everybody is involved.
Chris: Yeah, it’s cool.
LizO: They don’t even hesitate.
Chris: That’s good. I hope mom’s listening, because we need her to make a big donation this year.
LizO: Yeah, I know. This is the reason we’re mentioning her. No, I’m just kidding.
Chris: Get out your checkbook, mumsy,
LizO: Mama.
Chris: So, Liz O, let’s talk a little bit about this podcast.
LizO: So this is an idea you had six years ago.
Chris: Years ago.
LizO: Yeah, and people were starting podcasts. We should do a podcast. At that time, I’m like, “How do you even do a podcast?”
Chris. I don’t know.
LizO: Now, 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: And, CMT4Me. And, again, it’s another … And, keep in mind, don’t just push yourself aside on this one. This is 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?
LizO: No, I can’t.
Chris: You’re like, “Okay.”
LizO: It’s either 100% or zero.
Chris: Exactly.
LizO: That’s a problem, but that’s the way I am.
Chris: Exactly, 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: It’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?
LizO: That’s right.
Chris: And, 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.
LizO: So, 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 and LizO at Cycle 4 CMT 2021
Chris: Wow, 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.
LizO: Then, if I don’t see anything, you’re like, “Well, I like this. I like that.
Chris: Right, so I usually walk away after her visit, multiple pairs of pants, shorts-
LizO: Shoes.
Chris Shirts, shoes, you name it. It’s awesome.
LizO: It works.
Chris But, 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-
LizO I didn’t think he was going to.
Chris: I didn’t either, but then you learn-
LizO He was clearly like, “Whatever, whatever.”
Chris : You 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.”
LizO: So good at making those connections.
Chris: So, 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 terms of how they can help us towards our mission.
LizO: And, 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: Yeah. 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.
LizO: Yeah, we’re probably just talking. I don’t even know how long we’ve been talking.
Chris: People are probably like, “Oh, my God, will these guys shut up?”
LizO: Oh, my God, are they going to stop talking?
Chris: Right. 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.
LizO: Back to the ship in the bathtub reference.
Chris: I know, I know.
LizO: All hands on deck.
Chris: And, 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-
LizO: Oh, my gosh, we would love to be-
Chris: When you think of the news, and what would we love to do? It’d be sweet.
LizO: I’m so sick of hearing negative things. It’s all negative. So, I see this-
Chris: The news? You mean in the news?
LizO: Yeah. 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: Right, CBS News. Maybe we could be interviewed by someone who has a podcast now.
LizO: That’s right.
Chris: That has a greater reach.
LizO: Guys, we want to go national here. We want to go international, actually. We’d like to go international.
Chris: That’d be cool.
LizO: Get the word out about CMT. We work with people internationally, so let’s get this on. Let’s get going.
Chris: Yeah, let’s do it.
LizO: Do it.
Chris: Yeah. Liz O, have you heard of those Sprinter vans?
LizO: No.
Chris: No, 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.
LizO: Yeah, it would be fun, and we’d meet so many people. Now, that’s a story. Now, you’re cooking.
Chris: What’s it? Who’s the-
LizO: Alan Jackson?
Chris: No, no. Yeah, yeah, that’s Alan Jackson.
LizO: CMT 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: No, 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.
LizO: Yeah, let’s do it. You have to just stop working.
Chris: Yeah, okay, that sounds great. I hope people from-
LizO: Hey, talking about the podcast-
Chris: I hope people from where I work are not listening to this. No, just kidding.
LizO: So, 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: Awesome.
LizO: Yeah, 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: Awesome. All right, Liz O, time to go. That’s a wrap, sis.
LizO: All right, thanks, everyone for listening.
Chris: Yeah, thank you.
LizO: Cycle4CMT.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.
We’re back! Yohan yelled, sliding the door to the garage open. I noticed he was walking funny, not CMT funny, but like he had a stiff leg, a heavy foot, an injured limb? My perplexed look begged the question… What now?
He brushed off my concern, acting if I were being overly paranoid and concerned (like usual). “We had a great ride and of course, on the last mile, I was tired and I took a spill. I just sprained my ankle… and…well my elbow is banged up. Oh…. and sharp stick pierced the palm of my hand when I hit the ground, but overall, I’m fine. It’ll be better in a couple of days, he said, limping down the hallway.”
After a hot shower and short rest, I took a look at the damage. “My ankle is hardly swollen,” he insisted. I pointed out that the last time I had looked at his ankle, I could see a prominent ankle bone. Now it looked puffy and bloated, as if a small jelly fish had snuck in there and took up residence. So, the crutches came out of the closet, along with the sickening memories of past orthopedic surgeries, months and months of plaster casts, pain, boots, stinky feet, scars, blood and sores.
Our bald kitties ran across the hardwood floor to greet him, but one look at the clanking crutch made them hit the brakes and off they went sliding uncontrollably, face planting into the wall. Thank God the cats make us laugh!
Recognizing the all too familiar clunk, thud, clunk, thud of Yohan’s footsteps as he made his way across the room, I too wanted to hit my head against the wall, cursing CMT to eternity and back.
Curious Cats
Yohan’s had so many trips, falls, ankle sprains and surgeries, he knew the drill. No, not RICE. We changed that acronym to RICED. Rest. Ice. Compression. Elevation. Drugs…can’t forget the Tylenol, Aleve, etc.
There wasn’t a lot of pain, but by Monday, Yohan intuitively knew he’d better get it checked out by his doctor. This was the foot on which he has had 2 reconstructive surgeries, with mediocre results.
When the films were placed on the viewing pane, there were a lot of aahs and oohs. His x-rays lit up the room like lights on Christmas tree. The techs were amazed at the hardware holding his foot together. But who was the jokester who took a pen and drew a fine line across the outer leg bone?
What’s in your toolbox?
Fractured Fibula
Diagnosis? A hairline fracture of the fibula requiring 2 months in a walking boot, 24/7, except to bathe. Ugh. Well, it could have been worse, but it still sucks.
Home we went, trying to wrap our heads around the news. The first order of business was to purchase an even-up foot riser to avoid throwing his opposing hip out of joint. He learned pretty quickly that the even-up foot risers are treacherous as they get caught on everything…..even air. The utmost caution is warranted. And if you don’t catch the edge of the foot riser on something, the cats will make sure you fall…..hard.
Walking on 2 CMT feet is tough. Put one of those in a boot and now balance on one very high-arched foot, whose toes curl in and up, and sprinkle in some ankle supination (outward turning ankle). Not for the faint of heart!
Supination
Typical CMT Foot
Next, he looked for additional boot liners. Seriously, they send you home with 1 boot with liner. The “hand wash only” liner smells like death after the foot is enclosed within its sweaty fabric for only 24 hours. Yohan ordered a second boot (the lux version of the same brand) so he could wash the liner every other day. Luckily, when a piece of the plastic from the first boot started digging into his heel, he had a cushy alternative.
The pain from the fracture was bearable, but he started to get a painful pressure sore on the bottom of his foot which thankfully abated when slipping his orthotic into the boot. The first several nights sleeping with the boot were tough, but gradually his body got used to the inconvenience.
This morning, he woke up with a smile!! He was celebrating his 2 weeks down, six weeks to go in a boot! He’s a glass half full kind of guy.
Taking a step back, here are my reflections:
Yohan’s new electric mountain bike offered a rainbow of opportunity, where, for the first time in quite a long while, Yohan could just be one with his friends, his dad, and his people. He did some pretty amazing rides, going places and seeing things not seen before. And these days are not gone, just suspended for a short period of time. Not the end of the world, but a bummer all the same.
What was and what will soon be.
I guess we all have ups and downs. Personally, I prefer the ups, but don’t we all? I believe the ups build experience and self-esteem and the downs build strength of character. And then there are all the in-betweens. Every emotional state –happiness, sadness, anxiety, fear, anger – is transient, so accepting the peaks and valleys with calm and acceptance makes each situation a little easier to handle.
Life’s highs and lows are an inevitable part of being alive, so I try to enjoy the highs, learn from the lows and experience everything else in between with an open heart. I know….easier said than done.
Yohan will get through this small setback. It will become a faint but unforgettable memory that will be part of his ongoing arsenal when dealing with upcoming challenges, setbacks and successes. He’ll get back on that bike…of this I’m sure. Why? Yohan is no stranger to adversity.
He’s not giving up or giving in. He’s found an activity he thoroughly enjoys, an activity which is exhilarating and fun, creating long-lasting memories of freedom and adventure. Also, he’s determined to cycle in the Cycle 4 CMT event with his Uncle Chris, his dad and maybe even me! The Cycle 4 CMT (in person or virtual) is so much more than a cycling event……It’s a celebration of strength, resilience and community.
Vincent and Yohan
Want to know more about the Cycle (and Walk!) 4 CMT? www.cycle4cmt.com
Join us in the spirit of uniting with like-minded people, to fund research to put a stop to CMT. There is no cure for CMT… yet. But there will be because we, our CMT warriors, friends, family, loved ones, are going to make it happen. Grateful, so grateful for our community. Xo
My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made Yohan resilient, empathic, loving and kind.
A huge thank you to all our friends and family who have supported Yohan throughout the years. My husband, Gilles has always been so good at finding ways to spend quality time with Yohan, engaging him in so many activities: camping, horse riding, kayaking, and now, mountain biking. Yohan’s Uncle Chris has also had a profound influence on Yohan throughout his lifetime. Here is a chapter in their story.
Chris flew in to Claremont, CA to attend my Grad School Graduation. It was a total surprise!!!
Yohan’s CMT Story – Uncle Chris
By Yohan Bouchard
VT summers: me and Uncle Chris
Since I was 4 months old, every summer (and a few below-zero Christmas holidays) were spent visiting my mother’s side of the family on the east coast. Vacations in Vermont were a blast – often the highlight of my year. I have such fond childhood memories of our adventures, which included spending time with my grandparents, aunts, uncles, cousins and longtime friends.
Yohan, cousin Warren, my mom, Kevin, James, my grandmother, Uncle Chris, Aunt Mia and cousin Lila.
In particular, I spent a lot of time with my Uncle Chris; we’d go fishing, hiking, and swimming. In winter, he’d also take me skiing and snowboarding. But, as my CMT progressed, it was more and more difficult for me to keep up. I realized I was participating less and less in those outdoors activities, which we both enjoyed so much.
Snowboarding in VT with my dad and Uncle Chris.
Throughout the years, Chris and I had grown very close; he was always there for me regardless of my limitations. He knew my muscles were getting progressively weaker and noticed I was becoming more limited in my physical capacities. It was hard for both of us to embrace the effects of CMT, but we always managed to find alternative activities, like fishing, swimming and just some plain ol’ goofing around.
Goofin’ around with Uncle Chris and Warren
When Chris first brought up the idea of organizing a CMT fundraising event centered on cycling, I was impressed by his drive to actively raise money for a CMT cure. Witnessing his passion first hand, I too got excited by his vision which was to launch both an in-person and virtual Cycle event to fund treatment-driven research. I was convinced it would be a phenomenal successful, and I was not wrong. .
Over the last eight years, the Cycle 4 CMT has shown me just how far my uncle, and all my family and friends everywhere are willing to go to support me and so many others struggling with my CMT.
A surprise visit to the 1st Annual Cycle 4 CMT event
After the second or third annual event, I decided to face my fears and try to ride a bike again. My childhood adventures of being scared and unbalanced came back to haunt me, but I persevered. I wanted to show my Uncle Chris how much his effort, time and love meant to me. I biked around my college campus a bit, but that was the extent of my efforts.
Last year, with my dad’s encouragement and help, I gained confidence while I peddled on streets and swerved around people; I got back in the saddle. I was determined to actually ride alongside Chris and my friends on one of the Cycle 4 CMT routes. Of course, COVID had other plans, but it did not stop me. I did cycle in the Virtual Cycle (and Walk!) 4 CMT event with my dad and a group of friends over the Golden Gate Bridge in San Francisco. It was extremely fulfilling to do the actual ride with my dad and peers instead of sitting on the sidelines. My new electric bike was a game-changer!
Me and my dad, Gilles. We don’t go around obstacles, we face them straight on!!
I’m so pumped to go to Vermont this year and finally ride with my Uncle Chris in the 8th Annual Cycle 4 CMT. I will realize this dream as I want to show Uncle Chris how all his work has inspired me to face my fears and overcome them. I am extremely fortunate to have a supportive, loving family and an Uncle who is willing to go the extra mile.
Registration opens March 15, 2021. We are having both an in-person event in Charlotte, VT, on Sunday, August 29 and a virtual even from March 15-August 31, 2021, an anyone, anytime, anywhere can participate!!
Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call!
When my friend got a little older, he rode me less and less. I thought it was my fault. Did I eat too much? Was he embarrassed about my being just a tad shorter than a real horse? Was I too messy? One day, we had a heart-to-heart. He explaining that he had CMT. At first, I was excited – Country Music Television? Yee-Haw! He’ls going to be famous – a Country Music Star! Nashville anyone? I was dreaming of lights, camera, pampering! I might even be on TV!
My enthusiasm was short lived when he explained that CMT stands for Charcot-Marie-Tooth disease – a progressive nerve disease that affects his hands, feet, legs, spine and balance. He just could not ride me anymore, and we were both very sad. But, he did right by me, kept me in his family and today I have the best life ever at the Horse Park in Woodside.
Yohan sees me every time he’s home from school and I want to celebrate his kindness, understanding and compassion. His CMT makes his nerves deteriorate and his muscles weak. He looks so happy all the time, but I know that deep down, he’s worried about what the future will bring.
The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party!
Whether you are attending the event in person or participating virtually, here are your top 4 action items for you to complete right now:
The Cycle (and Walk or Roll!) 4 CMT event is so much more than a bike ride or walk around Charlotte, VT. It is a way to give hope to families and their children all around the world for a medicinal treatment to stop the progression of CMT.
I asked our friend Riley Ashe from Vermont, who never misses the event, to talk about what this event means to him. Here is what he said (get Kleenex out before pressing play):
My brother George’s heartfelt thoughts (grab yet another kleenex):
After-Party
Event After-Party
Rumor has it that we throw the best after-party of any non-profit event for miles around! Riders, walkers and party attendees are going to have a blast again this year.
After the morning activities, plan to relax in the beautiful setting at the Old Lantern in Charlotte, VT.
Quench your thirst with VT brewed beer, enjoy delicious food, including appetizers and a fully catered menu and bid on epic silent auction items provided by our supporters.
Rock out to the lively tunes of our favorite band, Leno, Cheney and Young, mingle with family, friends and hear about exciting CMT research updates from our internationally acclaimed CMT experts, Drs. Michael Shy and Steven Scherer.
CMT Experts – Drs. Scherer and Shy
Yohan and his Grandmother, Bev
The Love of an uncle for his nephew. Family is everything.
Our Fabulous Band
Walk 4 CMT!!
If you cannot make it this year – you can still participate by doing a VIRTUAL CYCLE or WALK or ROLL. It’s easy! Register: http://www.cycle4cmt.com. Here is some of the cool swag you’ll receive after you’ve reached your fundraising goal.
If you do a virtual event, send me pictures of your adventure! I need to brag about you! xoxo
Help us break the silence…get the word out about CMT!
Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he reminds me of my role, “Okay, Let’s go. Remember, you look around the store and buy something, and when you are ready to make your purchase, find me and I’ll introduce you to the person in charge.” And off we go – Chris with his Cycle 4 CMT flyers and his iPad, and me with my credit card.
Chris with chef, Maura O’Sullivan, at Penny Cluse Cafe – a proud sponsor of the VT Cycle 4 CMT event!
Entering the store, Chris will ask for “Phil” while I start browsing. Chris does his thing, I do mine and he usually walks away with a sponsorship for the Cycle 4 CMT event. And me? I get in the car with a new shirt, a few gifts, and other amazing VT products, like Maple Syrup (If you don’t like maple, you might as well skip the trip to Vermont-and just give a donation. Everything, and I mean everything has maple in it.)
On a more serious note, asking for charitable contributions, even for a great cause like the CMTA, can feel scary and awkward, but if you are genuinely interested in people and truly believe in your cause, success is definitely attainable. I’ve asked for a lot of donations over the past 15 years for the CMTA, but watching Chris in action raised has my fundraising IQ considerably. Here are a few takeaways:
The More You Know – Chris always does his research before walking into a store or business. He finds the owners’ names, reads about their backgrounds and tries to find a common link, interest, or point of contact. This commonality, once discovered, will definitely make the discussion and ensuing conversation flow more easily.
Description – Keep it short, make it personal. After finding the key person, who might initially be a bit guarded (as would anyone when approached by 2 determined strangers on a mission), Chris makes and keeps eye contact when explaining the details of the upcoming event: 5th annual Cycle 4 CMT. Nephew has CMT or Charcot-Marie-Tooth, not Country Music Television. A disease that attacks the nerves. Loss of function of the hands, arms, feet, and legs. The event has raised a lot of money for CMT research, our sponsor list is growing every year. Then, he usually shows the person the event website, the list of donors and a few pictures of Yohan). Pictures are worth a thousand words.
Yohan and Uncle Chris
The Story –-As an avid cyclist, skier, hiker born and raised in VT, Chris professes, “I often wish I could spend a day skiing or cycling with Yohan. He used to snowboard, but that ended when he developed CMT-related back problems and his feet, so deformed, could no longer fit in a ski boot.” Remembering the disappointment, I too start to choke up. He continues, ” I wanted to help him, but how? And then it came to me – Why not put on a CMTA fundraiser in support of CMT research, connecting the passion and energy that Vermonters possess for outdoor activities? As a result, the Cycle 4 CMT was born in the summer of 2014.
Empowerment – Chris’ delivery is moving and heartfelt. He speaks with conviction and confidence, empowering others to be part of the movement to end CMT. And it works. Why? People feel a connection to Chris’s story, to Yohan’s journey and to our determination to raise the critical funds needed to get us to clinical trials. Feeling our great sense of urgency, people want to take action and get involved in something bigger than themselves. Ultimately, giving back unleashes opportunity. potential and a powerful force of good in the world.
Kevin is more than a hero – he’s a superhero!
Thank You – You can never say it enough. We appreciate everyone involved with the Cycle (and Walk!) 4 CMT event, from sponsors to participants, and donors to volunteers. You are our heroes. It takes a lot of compassionate, kind, generous people to bring about change in the world and we are fortunate to have you by our side, fighting the CMT battle. Your involvement and consideration also provides promise and hope to the Yohans of the world who are deeply moved by the fact that you genuinely care.
So, when you approach someone for a donation, be confident and tell your story from the heart. What’s the worst that can happen? For diverse reasons, you may get a “no, thanks.” That’s okay. Don’t take it personally. Just know that you have succeeded in informing one more person about CMT.
Now, you have a few fundraising tools, so start a walk, a cycle, a sit-a-thon – whatever. Or, if you can’t do it this year, give to the Cycle 4 CMT. If you cannot make it, we came up with a new feature: the VIRTUAL walk or Cycle. Now anyone, anywhere can take part in the Cycle (and Walk!) 4 CMT. For more info: www.cycle4cmt.com.
PS: Just an FYI-This year, Chris joined in on the shopping spree. He ended up buying this top from one of our new sponsors – AJ’s Ski and Sports!! : I love visiting our sponsors!
“These shirts look fine. Why do I have to iron them?” Yohan asked with his serious face. As he held the shirts at arm’s length and brought them closer to his eyeballs, squinting to make out the “wrinkles”, I pointed the way to the iron and ironing board.
Still not game, he shared an idea, “How about if I just drop them off at the dry cleaners? Isn’t that what you used to do with Gilles’ shirts?” Damn, that boy has a great memory, I thought.
In all honesty, I used to hate ironing men’s dress shirts. When Gilles worked in a corporate environment, I would try and try, in vain, to produce crease-free shirts but for every wrinkle I smoothed, 2 more would appear. Obviously, I would not be the best of teachers, but once we got down to business and the drama and comedy died down, he made progress (watch the clip below).
On a more serious note, let me give you a glimpse of Yohan’s life today. He’s just completed his first year of Graduate School at Claremont University where he’s studying Positive Organizational Psychology.
Over the summer, Yohan is interning at a local company, Mind Garden. He’s loving it!
First Day of Work – Look at the nicely ironed shirt!
Mind Garden is an international publisher of psychological assessments, providing tools to facilitate positive personal and organizational transformation. He’s enjoying the people, the work, and the experience. On Fridays, he takes calls for the CMTA, helping others navigate their way toward finding solutions and information about CMT or Charcot-Marie-Tooth disease.
It’s a joy having him home for the summer. He’s always joking, laughing and telling stories. And, I love listening to how he perceives the world around him. For example, when he looked at the ironing board, he asked why it was in the shape of a surfboard. He is also convinced that “It is way too small for ironing. In fact, it’s so narrow, only a teensy part of the shirt fits on the actual board!.” I suggested he create a new type of board and make millions after pitching his new design to the folks on Shark Tank!
When I showed him a new piece of artwork featuring barn owls, he pointed out how the owl heads look like sliced apples. That imagery had never grazed my mind, but he’s right! My world is changing before my eyes.
Apple Faces
I just came back from a trip to see my family in VT and to help my brother, Chris, promote the Cycle (and Walk!) 4 CMT event (www.cycle4cmt.com). Yohan took good care of our very needy and spoiled cat, Tortellini. This cat, turning 14 in the month of September, is no easy keeper. She eats 4-5 cans of cat food per day and drinks tons of water due to some minor kidney problems. What goes in must come out! That’s right, he had litter box duty, but never once complained (that I know of, at least!).
Tortellini also has hypothyroidism, which necessitates rubbing a medication in her ears twice a day. And that’s not all…..he played with her, gave lots of loving and sent me photos /videos to prove she was still living, breathing and pampered!
Tortellini
Lastly, out of sheer frustration, he’s earnestly attempting to organize me, but that’s a ginormous job. It’s definitely not a summer project because it takes a lot of time for new neural connections to be established in the brain. A lot of time….years even.
Nevertheless, I’m mostly enjoying the experience which is creating more mindfulness in my life – I’m living in the now, and thinking less about “what’s next.” If you asked Yohan, he’d probably tell you that my progress is painfully slow but baby steps in the right direction are better than regression (which will inevitably happen sooner or later.)
Regarding his surgically-altered foot, he’s doing pretty well. His foot is still very sensitive and the nerves continue to be fussy, but he’s more mobile than ever before. He has drop foot on the foot that was not reconstructed, so he walks heel-toe, slap, heel-toe, slap, heel-toe slap. He’s adapted to this new gait and is in no hurry to have a third surgery. He is happy just the way he is, which is all that really matters.
The only big plans we have for the summer are going to Vermont to participate in the Cycle (and Walk!) 4 CMT on August 26, 2018, in Charlotte, VT. He’ll be walking in the event and raising money to advance CMT research.
Yohan and Uncle Chris
I am so proud of Yohan. I know in my heart he is resilient and will find ways to surmount obstacles that try to block his life path. In fact, while I was away, he discovered the wrinkle free setting on the dryer….smart kid! No more ironing, no more wrinkles!
He also knows that his family and friends stand strong and are fighting this degenerative disease beside him. And by getting involved with the CMTA, he is advocating for a world without CMT. For this, I am extremely grateful.
Well, I guess I’d better stop here. My personal assistant just asked me to put my keys where they belong and to throw the empty cat can and lid in the recycling-after it is rinsed out, of course. Apparently, I’ve been slacking!
“What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my leg for any extended amount of time makes me cringe. Yuk!
I will not stand for this. Will you?
Helping Yo with his drops!
“Ugh. Can you put these drops in my eyes?” Yohan groaned. He had just had eye surgery and needed drops every hour, on the hour. I almost said, “Buddy, you can do that yourself.” And then I remembered his tremor and weak grip strength. “I tried,” he grimaced, with water streaming off his cheeks, “but I missed!”
I will not stand for this. Will you?
Bethany and Elizabeth
I dread the thought of Bethany coming down with a cold because coughing takes energy and congestion robs her of the precious air needed to breathe effectively. Did you know that CMT can affect the nerves leading to the respiratory muscles? For some with CMT, the thoughtless act of breathing freely becomes a forced, challenging and anxiety-provoking undertaking, which may necessitate frequent visits to the ER. Not fun. Not fun at all.
I will not stand for this. Will you?
So, you see, CMT is much more than a funky way of walking, foot drop, high arches, and leg braces. CMT may also causes cramps, falls, balance difficulties, cold extremities, nerve, muscle and joint pain, curled hands and toes, altered reflexes, extreme fatigue, sleep apnea, hearing loss, etc. In short, CMT is a bitch!
I will not stand for this. Will you?
The most amazing thing about CMT is that we can fight it. Unlike many diseases, the genes that cause many types of CMT are known. The CMTA’s scientists are working tirelessly to stop or slow down the progression of CMT, and they are making headway. We’ve accomplished so much since 2008:
Highlights
• Clinical planning has started. Working together with the NIH and the MDA, we are developing our clinical infrastructure: new centers, more clinicians, patient information and history over time.
• We are developing ways to measure disease progression in people with CMT.
• We are starting to use cellular and animal models of CMT to help pharmaceutical companies test their drugs quickly.
• We are partnering with pharmaceutical companies and labs to apply breakthrough genetic therapies (like gene therapy, RNAi, CRISPR) to CMT.
• We will continue to expand our program to cover more forms of CMT.
Join me to raise the funds to bring a drug to market and rid the world of CMT. Big goal? Well, maybe, but why not dream big? We’ve got to start somewhere.
WE will not stand for this.
Imagine what we can do TOGETHER! Did you know funds are what stand in the way between us and a treatment for CMT? Not scientific understanding. Not resources. Not clinics. Not patients. MONEY. I certainly don’t have all the money needed to bring a drug to market, but with your help and the help of others, the money can be raised to support scientific research. It’s doable.
Chris Ouellette-The organizer of the Cycle 4 CMT
Want to help? Our family has put all its efforts into Vermont’s Cycle (And Walk!) 4 CMT event and thanks to friends and family like you, we’ve raised close to $650,000 over the past 4 years. That’s not chump change, friends.
We are now preparing for the 5th Annual Cycle (and Walk!) 4 CMT event, to be held in Charlotte, VT on Sunday, August 26. Every dollar counts. Any donation is valued. Spread the word.
To join our efforts to build a better tomorrow, check out our website: www.cycle4cmt.com and donate a little or a lot.
Here is how to start changing lives:
1) Register for the Cycle (and Walk!) event and/or,
2) Fundraise! Tell others why this cause is important to you and/or,
3) Spread the word and register a friend and/or
4) Sponsor a rider, a walker or the event itself and/or
5) Sign up for the after-party.
Thank you for offering a promising future to Yohan, Rylee, Bethany and the 2.8 million + people around the world with this debilitating disease.
What’s a Funcle? A Funcle is a Fun Uncle, of course! Yohan’s Funcle Chris (my brother) is a whirlwind of energy, laughter, determination, and gusto. Our families have remained close over the years, vacationing together, spending summers in Vermont, celebrating holidays together, etc. Here are just a few pictures to illustrate my point:
From their first encounter, they were fast friends – Funcle Chris and Yohan
Bahamas trip
Yohan looks up to Funcle Chris for many reasons, one of which is his relentless drive to be part of the mission to put an end to CMT or Charcot-Marie-Tooth disease with our annual “Cycle (and Walk!) 4 CMT.
CMT does not run in our family. Yohan’s CMT is the result of a new genetic mutation. There are many subtypes of CMT, and he has the most common type – CMT1A. It’s intriguing to know that CMT is known as a heritable disorder, but spontaneous genetic mutations causing CMT do happen – it could even happen in your family!
Compelled to change the fate of so many with CMT, he changed his anger and frustration to ACTION! Here is his story:
Born and raised in Vermont, I have had the opportunity to experience the natural beauty of this environment as an active cyclist, skier, and hiker.
In 2014 I had a vision and drive – I wanted to provide individuals with CMT the opportunity to experience the activities that define Vermonters and our culture. CMT affects approximately 250 people in VT as well as my 25-year-old nephew Yohan Bouchard. Yohan tires easily and has difficulty managing the pain when walking. Due to foot deformities, he cannot wear a cycling shoe, ski boot, hiking shoe, etc.
I realized that an opportunity existed – connect the passion and energy that Vermonters possess for outdoor activity to a day of fundraising so individuals with CMT can someday enjoy these simple pleasures. The only way to accomplish this vision is through fundraising in support of research to stop the progression and prevent CMT in the future. As a result, Cycle 4 CMT was born in the summer of 2014.
From 2014 to 2017 we successfully raised over $640,000. The money we raised was and will continue to be used to fund our goal and mission… support the development of new drugs to treat CMT, to improve the quality of life for those with CMT and ultimately, to find a cure!
Please help find a cure for CMT – Join us on August 26, 2018 to enjoy incredible cycling, breathtaking views of Vermont’s Lake Champlain and the Green Mountains while fundraising for a great cause!”
To learn more about our Cycle (And Walk!) 4 CMT, please go to our website: www.cycle4cmt.com. Come to meet the Funcle, his nephew, Yohan and all the wonderful individuals who make this event successful year after year. Can’t come? Well, a donation of any amount would help us reach our $250,000 goal. All the funds raised will be earmarked for CMT cure-driven research! Sponsor the event here: https://cmta.akaraisin.com/Common/Participant/Search.aspx?seid=16550&mid=22
ur sponsors!
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