CMT 4 Me
CMT 4 Me
CMTA Progress Through Unity With Gilles Bouchard, Laurel Richardson, and Jeana Sweeney
The CMTA presents CMT 4 Me, its official community podcast. Join hosts Chris and Liz O. as they pull up a chair with three passionate CMTA advocates: Gilles Bouchard, Jeana Sweeney, and Laurel Richardson. In an honest, free-flowing panel conversation, this group shares their wisdom about life with CMT. From the frontiers of science to profoundly personal stories of family unity, they offer rare insight into the challenges and indestructible solidarity of the CMT community.
Highlights:
- Gilles Bouchard shares updates on CMT research and the impact of the STAR program.
- Jeana Sweeney shares her personal journey with the CMTA. With 20 plus years of raising awareness and funds. She's a fierce advocate for the CMTA.
- Laurel Richardson emphasizes the strength of the CMTA community in overcoming challenges.
Stay connected with us. Follow CMT 4 Me to keep up with our monthly episodes, where we explore the stories and advancements that are important to our community.
Join Our Conversation: Your experiences and stories are what make our community strong. If you're interested in sharing your journey with CMT, please fill out our interest form. You could be the voice that inspires others in our next episode.
Explore More: For more in-depth conversations and insights, check out CMT 4 Me Raw and Unedited on YouTube. It's a space where we share openly and connect more deeply with our CMT family.
CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, interviews with the CMTA community, including board members, branch leaders, and CMTA team members. Have a story you’d like to share? Write to info@cmtausa.org. You may be our next guest on the new CMT 4 ME podcast! For more information on the CMTA, please visit our website: cmtausa.org
For more information about CMT and to support the CMTA, please visit www.cmtausa.org
Everything that we're accomplishing in research, I wanted to be part of it. I literally sat at a branch leader conference in that for a weekend and thought I have to be part of this team and what you all are doing. It's incredible. But the thing that really drives me is, no one's gonna do it for us. We're a rare patient advocacy organization, we're trying to solve rare disease issues, and no one is going to do it for us except the patient communities. And that's originally why the CMT was founded. If you don't have passionate patients and their families involved, we would none of this would have happened. And you all are obviously the those people who helped to build the organizations. We have to do it because no one's going to do it for us. That's why I'm involved.
Chris Ouellette:Hello, everyone, this is Chris and
Elizabeth Ouellette:Lizzo. We are a brother sister team.
Chris Ouellette:And on behalf of the Charcot Marie Tooth Association, aka CMTA, we are Mina chia.
Elizabeth Ouellette:From coast to coast. Hi, I'm from California. Chris is in Vermont. But right now I am in Vermont too.
Chris Ouellette:And this is another episode of our podcasts named what Alyssa
Elizabeth Ouellette:CMT for me CMT the number for me. That's
Chris Ouellette:right, folks, CMT, for me, a community focused podcast dedicated to those with CMT, giving them a voice in the community to share their stories, good or bad successes, challenges and much more. Hey, Chris, before we do some
Elizabeth Ouellette:nitty gritty of this shop, I just wanted to say that the last two weeks in Vermont have been crazier than an outhouse fly.
Chris Ouellette:Yeah, what the heck's an outhouse fly? But I would agree with you. It is crazy. It's been nuts. Nuts nuttier than a five pound fruitcake, give us some insight. Why is it like an outhouse fly here in good old VTX
Elizabeth Ouellette:last night yawn was up all night, throwing up. Oh, awesome. You started the trip with this old lady. I had all my stuff in the carry on Ben. She comes down the aisle. everybody's yelling at each other in San Francisco and everything. She grabs my stuff, throws it on the front seat, taking my stuff out. And I'm like, What are you doing? So I had to put it all back up and she had attitude, man, then we got here. And my son is has been going, going fine. Whistling whistling just whistling The guy came back sit. Yeah, there was a hole in it. All this smoke pretty well. All this smoke coming out. I just opened a bottle of a sprite for Yan who's been sick all night. Often did the guy the Uber driver must have shook it. sugar water all over me all over my face all over the kitchen. And then going over mom's house has been crazy. Getting the automatic feeder. It's just been one thing
Chris Ouellette:after another nonstick. Really nice thing at their house, right? Don't you like the inside temperature? Yeah,
Elizabeth Ouellette:it's like 90 degrees. And then you're trying to like playing bathrobes and csef and yawns like I'm gonna pass out. But like, just to sit there and say with a cat. And it's like being in a sauna and trying to do everything like normal. Have like mom wear a sweater? Oh, no, I don't like anything overweight. No, I just like to wear the blouse. And the meantime, everybody's just taking all their clothes owners as Oh,
Chris Ouellette:nice. We'd gone. What's that? Pretty crazy as well. Mine was pretty good. So woke up hard day at work. I'm like, Let's go Skeens tomorrow afternoon. Saturday afternoon, me and I Well, me is up Friday night because lives in New York City out with their friends got her phone stolen. So she's in panic mode. So Mia starts dealing with getting Lila new phone in New York City. She's traveling all around Manhattan trying to find a iPhone, whatever. They finally get it connected. And Warren and Lila have similar phone numbers. So warrants at work, they accidentally disconnect Warren's phone. So he's like, Hey, what the hell's going on? I don't have any service here. So he's the innocent guy. And now he's taken the he's taken a beating. It's just been crazy. Just crazy. And now the cool thing is I'm getting involved with mom and Dix and dad's inspections. So you go into these homes, I almost got attacked by a dog. Some old guy won't turn his lights on. He has a cane. He's 92 I thought he was gonna walk me and lock the door and I was gonna get killed. That I leave these places smelling like smoke. I'm wheezing. Pretty crazy here. But that's the way it goes. That is the way it goes. You
Elizabeth Ouellette:told me about the experience. You had some woman thought,
Chris Ouellette:oh yeah. And then I'm leaving. I go into the apartment do the inspection the woman's like, Oh, you're Bevan Dix daughter and I'm like, Whoa, hold on a second. My name is Chris not Christine. How to straighten her out. And then on top of that not skiing. I'm like I will get a Christmas tree. I will Get a Christmas tree we have just over two weeks drive down. No trees on the lot sold out some store of a tree. So anyways, we're
Elizabeth Ouellette:gonna go down tomorrow big snowstorm crazy. Anyway, enough complaining from our shenanigans and you can always be
Chris Ouellette:worse. Crazy. Let's get to our guests Lizzo can't be worse. I'm sure Tim it always.
Elizabeth Ouellette:I don't know. I can't think of too many scenarios. I
Chris Ouellette:want to announce the first individual here. We have three folks on the podcast today. Number one is this great brother in law of mine, which I call chili dog in his name is Hugh and he's CMT as Chair of the Board of Directors. Right on hellos you know, Chris nice. Who asked we have Liz Oh,
Elizabeth Ouellette:thanks, Shelly. How you doing?
Gilles:Doing good doing good. Oh, who else
Elizabeth Ouellette:was waiting for him to say hello. I'm just greeting
Gilles:bird it's turning California.
Chris Ouellette:Let's go. We
Elizabeth Ouellette:have Queen Gina.
Chris Ouellette:We Gina.
Elizabeth Ouellette:She's our segoe Oh,
Chris Ouellette:what is that?
Elizabeth Ouellette:I can never remember her title because it's so long. Like she has to have the longest title of everyone on the staff. Chief engagement and gift officer CEO. Nice. Then we have the comedic, Kaos controller law Richardson she Darko, the director of community outreach.com And Seago here, welcome.
Chris Ouellette:Yes, yeah, to everybody. Listeners, we're extremely excited. You have senior members of the CMTA. Here today, they're going to give us a lot of insight in terms of what they do, what they have accomplished in 2023, what's the path going forward to 2024, etc, etc. Without these individuals here, we would not have the CMTA they play leading roles to support research, secure donors, drive the science and every single day fight for a cure for CMTA. Yes,
Elizabeth Ouellette:it's pretty remarkable. I'm gonna ask a broad question to Gina, Queen Gina, you and I have been involved for a very long time in the CMCA. What are the five major changes you've seen over the past 20 years? Oh, my gosh.
Gina:That's a big question. Definitely research. It's just expanded tremendously from the people that are involved on the star advisory board. We're International, our community has grown. We have two camps. The staff has grown a little bit. Oh, man, we got through COVID. At a point brilliantly, I think that we didn't even skip a beat through COVID. More people within the community are wanting to get involved with the cause there's an ownership there. There's a one and there is a need. And they're finding the TMTA and filling those needs. I think those are the big five changes. That's
Chris Ouellette:a great response Gina for no prep. Right. So we did not prep you for it. Back to Gilles. So Gilles, tell me why you're engaged in the CMT. And what exactly does the chairman you know, the board do? Like where do you place your emphasis and focus?
Gilles:Well, you know, why made us rise because of the home. When we started out as CMT we, it wasn't first in the family. So we decided to roll up our sleeves and try to make a difference. And notice this was very engaged in many years before I got engaged, I helped launch a START Program because I felt we needed a long term strategy. And then when I quote, retired from my tech life, the STAR program and growing so much, and are going so large, I think you've welcome me to help to take it to the next day. And it's been very exciting. And what a trip. Yeah,
Chris Ouellette:that's awesome. As to
Gilles:what the chairman does, I don't know as little as possible, just go. You know, I'm great at delegating. So I try to be great people and let them run with it. A couple of great case in point here.
Chris Ouellette:I'll tell you from my chair, chair, what I've seen you brought a lot to the table with regards to the CMTA in terms of moving that research forward and being an exceptional leader for the team there. People are very excited to have and always very positive. And just moving on Laurel. So tell us a little bit about what you do in your role. How long you've been part of the CMTA
Laurel:Yes, gosh, join the staff five and a half years ago, Chris and Lizzo but I was a volunteer before that I helped to lead the San Diego branch for a couple of years. And then when my husband retired from the military, we moved back to Wilmington, North Carolina, and I started to branch there so really got involved as a volunteer was very moved by the mission and the hard work of the team and I wanted to be part of it and an opportunity came up when China moved over to the development side. So I came in And to June of 2018, and I spearhead education and community programs. So things like our annual patient research summit, the branches all over the country and a few in Canada and Mexico, our quarterly lunch and learn webinar education meetings, which we're still super excited about. They're going very well. And then youth programming that's led by Jonah Berger. So you've got camp, the East and West, you've got the compass young adults group, the youth council that Jonah and his amazing youth council members lead, so quite a lot going on, and community outreach, which all feeds together to everything that we're doing to support the mission. So it's amazing
Elizabeth Ouellette:that you've only been involved for five years, I feel like it's been 20 You do so much. And you've just went in there and you got involved and you made it happen. You're making it happen with community and everything else, and that you three are just amazing at what you do at the CMTA
Chris Ouellette:it'd be great to hear Alyssa with what I've been thinking about. Oh, and keep in mind was so I'll just run this entire episode. Okay. See you just sleep. Thank
Elizabeth Ouellette:you do anyway. So, alright, so
Chris Ouellette:I'll let you know when it's okay to ask a question. Okay. I'll give you the thumbs up. All right, cool. Wait for my cue. No, but it's very interesting. I think of the talent we have here. All the positions you guys with your skills could take on or companies you could work for? Why are you working for the CMTA? Gina?
Gina:Why I'm working I believe in the association. But I trust the leadership behind the association, their vision, their passion. They share the overall goal of our community and that is to bring treatment and cure to those living with CMT. I have CMT. My CMT is a spontaneous mutation and my youngest daughter, who also has TMT, I work for us. I work for the 3 million people worldwide living with CMT, every single day that I sit down. I'm reminded by every email every phone call seeing Riley why I work so incredibly hard, but I trust the organization as a patient, not as a staff member, not like him. But no, when I talk to people, it's, they trust the CMTA. But I wanted the things that I always try to tell people is I too am a patient. I see the CMTA was a patient. So that's my
Elizabeth Ouellette:question. You find a lot of ups and downs like everyone, we've had changes in leadership's and things and there's been hard problems, easy problems. Why are you still here, man,
Gina:because I have a goal. And my goal is to bring treatments. So
Chris Ouellette:Laurel, why are you guys involved? Why are you involved? Like what's your passion, what drives you to get out of bed in the morning and go to work for the CMTA
Laurel:I would echo what Gina said, I'm a patient third generation CMT one a patient. from the patient perspective, I saw what the CMCA was doing the dual mission, the incredible support, everything they were accomplishing and research. I wanted to be part of it. I literally sat at the branch leader conference in that for a weekend and thought I have to be part of this team and what you all are doing, it's incredible. But the thing that really drives me is no one's going to do it for us. We're a rare patient advocacy organization, we're trying to solve rare disease issues, and no one is going to do it for us except the patient communities. And that's what originally why the CMT was founded. If you don't have passionate patients and their families involved, we wouldn't none of this would have happened. And you all are obviously the those people who helped to build the organization's we have to do it because no one's going to do it for us. That's why I'm involved. So
Elizabeth Ouellette:if you want me to ask an additional question, and we know why you're involved, but what makes us different from other organizations that are related to CMT, what makes the CMT stand out?
Gilles:Many things, but I think we have two pillars, right, we have the community and the research and so that was our program. And those Jupiter's really outdone on each other. We the number one in both areas, and the star has become by far the leading funding program for research non no outside of governments. Someone was showing me a chart like five years ago, we were spending like 5% of the United spending that we spent 25% becoming news and current in the whole CMG ecosystem. And that's being fed by the community because all this funding come from the community, because it trust us because we're so efficient because we highly rated and we work very hard, you know, 92%, or the money people give us goes to our programs. So we have this combination of a great powerful research program and support from the community that create standards together which are incredibly unique and you won't find And parney Any organization, even in a nonprofit world as I talk to them, and we got to maintain that it's incredibly powerful and exciting. You
Chris Ouellette:know, you guys have all referenced trust, he had a lot of these charities and people donate and generally always ask, why would they donate? What happens with the money? You hear good stories and bad stories? You know, you guys have a common word that you say you reference trust. Yep. But then a lot of aspects of the CMTA. So funny, you guys want to highlight or speak a little bit more about that. Great to hear.
Elizabeth Ouellette:And let me add the other word transparency, they talk about? What does that mean, actually, in real terms,
Gilles:I always tell people that we're in the business of trust. And giving last is just reacher and people's trust. And you're right, what I started out and what people told me nonprofits, there's meals of nonprofits, minimal charities that a lot of are great at telling a great story. But when you look under the cover, that's not what they do. Okay. And I think our track is, basically we do what we tell people, it's what standards, we're cautious about all we say, the words come through, and it's why we have this star ratings from the agencies, which almost nobody gets, because we basically do what we say we're going to do. The only way you can measure that, honestly, you spent hours and hours asking questions you're going through all kinds of mature is looking at those ratings like chatty navigator. And it's very hard to do what we do the way we do. It takes a lot of work. And I'm so proud of what we're doing this way. Okay, but it's all about earning people's trust.
Elizabeth Ouellette:How do you earn people's trust
Gina:Gina, and then Laurel. Everything that is Y'all said, is something that I really tried to explain to people that are calling to the CMTA. In addition to the four star Charity Navigator, the 100% rating that only 15 other health charitable organizations received CMTA receive that I tried to express that over the phone. But I think that trust also comes from when people reach out to the CMPA when they're first diagnosed, or their symptoms. There's progression within their CMT, and they're reaching out to the association, how can we help them and we provide resources and information and community and being responsive to that, I think really pulling them in and making them feel that they're not alone in this journey. And that is something that I really tried to give the person whether it is on through email or on the phones, that the CMTA is there for them in their journey and our community.
Chris Ouellette:So you're really out of the gate, you're focused on building a relationship, it sounds like right, that's probably a big component of how you gain the trust of someone.
Laurel:I think providing solutions to their answers, you have people newly diagnosed, like Gina said, they're calling in and they're scared, and they're upset, and we have answers, but we also do what we say we're going to do. So Sheila's talking about that from a big perspective, right research transparency, where we invest our dollars, we do exactly what we're gonna say, we're we do, I'm coming at it from a little thing, like, if I get a phone call, or email, or gene or Jonah does, or anyone on our team, and they say I'm gonna call you back, or I'm gonna get you this, we do that we always have that touch point, we always follow up, and we always do what we say we're going to do. And then slowly over time, as that record relationship is built, then we become that trusted partner, when it comes to a patient advocacy group and providing education, providing answers pointing out the centers of excellence. They don't even know there are centers of excellence when they're newly diagnosed. So getting them to the right person to get the answers that they need. And then they like Jesus said, they feel like they're part of something they part of our family and part of the organization.
Chris Ouellette:And so I heard Charity Navigator, right, then five star and do you know what that is? I mean, I know. You guys says, I don't know. Right? Maybe that's tied to trust or something. I don't know. Who wants to tell us what the heck, that's all about. Okay, five star. What is this? It's well, it's I think it's
Gilles:the most respected organization that evaluates nonprofits, yourself of them. But I can tell you from experience, they go much, much deeper. And they asked us, How does it questions and better provide all kinds of documents. And they basically evaluate how good you are and using the money that people give you. And they keep raising the bar. It's a very thorough evaluation, as Dina said, in the health space, which shows how to serve 1000s of charities, I think there's like 12 and 15. And got this perfect leading which we have, which I don't guarantee we'll keep forever, but I think we definitely want to be a four star, which has been for many years.
Elizabeth Ouellette:I've looked up the CMTA. And I saw that Seller Rating but I've looked up other CMT related organizations, and I don't see anything there. So what does that mean that there if somebody's not on Charity Navigator, what does that mean? Sometimes
Gilles:they might be too small. So the only way A totally shown I think it's above a million dollars. Sometimes they haven't been alive long enough. Sometimes they don't publish their results then behind. So there's many reasons for that. But I think it's in everybody's interest to be rated to be honest. Many years ago, 10 years ago, the CMT was a one star, two star. So I think it was a big kick in the butt for everybody to get better. You know, I mean, we always strive for excellence. And this is what a very good measure for everybody to look at.
Elizabeth Ouellette:I got a question for you, Chile. Why don't we have a cure yet? 20 years ago, we're like, we didn't have anything 15 years ago, we said two to five years. Now. 20 years later, we're given all this money to research, Where in the heck is the treatment to stop the progression of CMT? Why haven't we got there?
Gilles:Anyone who tells you the cure in two to five years is lying to you because they just don't know. Okay, we could have won. But we have to play the odds. And then this business is crazy. 90% of the drugs and clinical trials fail things beyond our so all we can do is that a very strong broad strategy where which is exactly what stars right it was, let's put CMT on the map. Nobody cared about Shinji Chinese are going we created all the elements of the puzzle so that people would care not tons of companies, tons of researchers of the latest technologies are being applied to CMT. So that's the only way we can guarantee success. We cannot predict the time on basically we build an army. Okay, by the way, you might have heard but last week, the approved the very first Crispo therapy came out. Two years ago, the top crisper people in the world call me and said we want to work with you on CMT. So that's the kind of stuff would never happen before but now we made CMT attractive to the very best of the best, and good things will happen. And by the way, as I've told you guys, we entering what I call star 2.0, Star 1.0 was to make CNG attractive and make all this happen. We they're not it is a discussion would have is different zucchini, remember, he said we entering the age of therapies, that's happening, we're not things are starting to hit patients who signed see clinical trials, it's gonna be a long process, there's gonna be disappointment, that is not a disease they've been in for 20 years, they don't have treatments yet, back we'll trust we're not going to tell you the treatment of this one thing is wonderful, because we just don't know for sure there will be disappointments. But the overall ecosystem is like an order of magnitude in different places. And it was, it gives me a lot of but also, you know, we have some humility, and know that there will be disappointments and setbacks along the way. You
Chris Ouellette:said hope and that's as you were talking, I was thinking about that, whether Gino Laurel, but how do you keep people positive? And that there is hope, given this complex process, right with trials and the failure rate? excetera? I'm sure you guys engage with that all the time. Right? So it's like, oh, geez, I don't know if we'll ever find a cure. I don't know if we'll ever find treatment. And I don't know if I should donate anymore. And so how do you respond to that? That'd be a real thing. It
Gina:is. And I think for me, every conversation is very different. But one of the things that I tried to hone in on and Joe, you may want to, like, expand on this, but 15 years ago, really stark was born 2008. And starting with one subtype one a we had one project going on working through the NIH and luciferase, I remember the very first branch meeting that I went to I started at the CMTA in presenting star and seeing how the learning so we had one A and then A donor said, Hey, we want to add on that platform. You all are growing this like research project. So amazingly, I want to see something for me. And with donor support, we were able to grow that and then one B same thing. And then here we are. But I think the learnings of star, it's not that we pause. But so many things had to be in place to where we are today to be attractive. And that involved toolbox. And I think that the toolboxes, animal models, stem cell biomarkers, all of these tools, that the CMTA needed to expand as there is not necessarily a cure or treatment in place. All of these things have happened in the past 15 years that we have invested in to get where we need to go. And I don't know if patients or donors necessarily see that all the time that we're throwing out emails that we've expanded this and we expanded that we had to have those things that we had to invest in those things to get to where we are today with all of the pharmaceutical companies that are coming just to the CMTA and saying, hey CMTA I want to work with you, because we have these tools. And so now that We're here. We're really seeing the expansion of all of these amazing things that are happening in the world of research. That's how I kind of create that hope that, yes, we're not where we wanted to be 15 years ago, but we have expanded our platform. We've expanded our tools. Now is go time, right? We're on the right path. We have everything that we need. And we have the leadership for it. So I talked to that a little bit, Chris. And really, I don't think
Chris Ouellette:that's a little bit. That's a lot. So that's a pretty little the answer. No, it's awesome. No, it's great. It's awesome. Yeah, if you're speaking, you can set your emotion and passion. Right. It's fantastic. It's great. Yeah.
Gilles:And one thing too, this is what's interesting in this star 2.0 That that we entering is the patients are getting more and more involved in Well, we do. You might have offensive like natural history, we spending a lot of money doing natural history study, because this is what companies want to figure out how the disease evolves to test drugs, clinical trials, obviously, there's all kinds of research within the agency on patients. We're doing surveys for companies, we're doing marketing groups so that they can understand people's impact with their CMT lives. None of this was happening. 10 years ago, now we have companies asking us all the time to work with the community with patients, so people actually become part of the solution now. And this is what I call star Pano star is reaching into the patient's lives now, which is really incredible. Okay, yeah, that's cool.
Elizabeth Ouellette:Yeah, I would really like to involve Laurel in this discussion how she gives hope to the community, because you're at these conferences, you build the conferences and these meetings, and how do you see Pope? And how do you relate that hope to the people you work with?
Gina:I think that way
Laurel:that I keep hope I am a realist. So I am grounded in realism. I know there's not a magic bullet. But being part of this team, I see what is being built and the momentum and the energy is unbelievable. Hearing the history of how star was formed and has grown to this point. And now what we need to do to get across the finish line, that gives me tremendous hope as a third generation cm tear, hope for my children hope for my grandchildren, if CMT continues in our family. And I think it's listening, truly listening to what's going on in research, trusting the CMTA and seeing the work of the Scientific Advisory Board, the star advisory board, it's unbelievable. And I think that you can't ignore that energy and momentum that's being built. There's something there, I visualize, after hearing all the scientists and Doc's talk about it, I truly visualize a pathway. And so I think about a road in my head. And I think of all the things along the way, because this helps me to understand it, you know, the natural history studies, having a community that has to get involved, you know, as patients and partners, having biomarkers, all the outcome measures we need, and I think of our CMTA star pathway. And at the end of that is the hope, which is a treatment or cure. And I'm, I need to visualize that. And so that helps me keep my hope going. And also just thinking of future generations. And myself. I would love to have a treatment for CMT.
Chris Ouellette:Yeah, I think you kind of in summary of the hope piece is I'm listening to you folks. We're thinking about our listeners, people have hope when you are connected to individuals like yourself, or members of the CMTA that just are committed, they have a drive, they have a passion. That's really what you guys represent. Obviously, I don't have CMT. But being part of that organization, in terms of the challenges you guys have gives me a lot of hope in terms of what you're working on for the future of those CMT. It's so nice work. It's awesome. Yeah.
Elizabeth Ouellette:And I think people want to get involved. A lot of people are angry, I feel like on when I go see the Facebook group and stuff, but as you take as much energy in that anger and turn it towards passion and getting involved, we'd be even further in our pursuit of a cure. I think. So what's on the agenda for 2024? What do we got to live? Whoa,
Chris Ouellette:can we back up? Whoa, whoa, whoa, whoa. What are some highlights for 2023? And 2023 is not over yet. There's Liz. Oh, she's that's good, though. She wants the future. Now, but that's one and done. 2023 is over in her mind.
Elizabeth Ouellette:You spoke with Gina because she was I cannot think of January 1 2024. Because I got 2023 to deal with and what does that mean? Yeah.
Gina:What does that mean? That means we got to fundraise, right? And we got to bring the dollars in as when people are coming to the CMTA and they see like the CM Ta looks mighty on the outside, I always tell people, we look mighty on the outside, but we're very small team on the inside, and we accomplish so very much. But all the research that is coming out all the programs that the CM ta does, that all needs to be funded it and it's our community and their friends or family that we need. Everybody needs to like rally together in order to get to that end goal. So I still have got 12 days, 12 days to fundraise for the organization. But I have 12 days to fundraise for the CMT community. I always tell people that I'm fundraising for us. I'm fundraising to provide research projects. I'm fundraising to provide programs for us. So yeah, I got a lot of work to do. You
Elizabeth Ouellette:know, what do you tell me if I go oh, well, my daughters are tired of giving to the CMT and hard and giving CMTA Yeah, research, blah, blah, blah, pharmaceutical companies and everything. Have some money here, but I'm not really sure want to give it again to the CMT? Why should I give it again, pitch it to me. If
Gina:you don't give who is going to give to the association? It's as patients that are the driver in the end goal and what is the end goal? So I think that would ask you that the CMT a CMT, in general is not very well known, or not the American Heart Association or the the Humane Society, because they have a broader reach people know about them. Their campaigns are much larger on a bigger scale, because they have the people, the CMTA and CMT. We have our community, it's our community that I asked to one support the cause, but then they have to ask others to support us. So if you chose to give to the Humane Society, that is fantastic. But I asked you also to consider this TMTA because without your support, we can't do what we do.
Chris Ouellette:The other thing I think about when you're at mom's house, it doesn't mean you know, I don't support this, she gets a lot of things in the mail with regards to donation, tons Hanzo. And I read through that, let's say it's for animals, etc, which I would support, but there's not that strong connection. Yeah, there's this place. Yeah, so many places you can donate and put your money. And there's so many great causes. But from my perspective, what's different with the CMTA? They're, they're sad, true, you guys worked so hard to make that connection with the community. It's much more than just a newsletter, or a request for a donation that goes out via email, right? You guys really make that connection. And that's critical, I think, to the success. So are you gonna say
Laurel:and I think it comes, you know, everything gene is sad, and it comes back to no one's gonna do it. For us, it has to be us. So millions and millions of people who are going to give to the American Heart Association for the cancer Foundation's, or the Humane Society, but only people with CMT, who are affected, and their families are going to support our cause. So it has to be us and we need them. We can't do it without them.
Elizabeth Ouellette:A lot of times, fundraising is an emotional response to something you see, is there anything you can think of this year or last year that you see maybe a camp or anything or real reason why people would emotionally say, Hey, I gotta give you the CMTA, you
Gina:know, for me, was the summit this year, and obviously camp. But one of the things that I saw at the summit was, there was an energy there, that people are hungry for just meeting others living with CMT. There's so many people that have never met another person living with CMT, and being around that, and the TMTA, giving that and to our community providing a space for that. There's a want and a need there. But at camp, there are so many stories, and I love telling the story about I went to a branch meeting and I presented this TMTA and we were talking about camp and talking about research. And she came over to me and she said, Gina, if there is a treatment for CMT, does that mean camp stops? Like, because she has a place of comfortability, a place to grow her confidence. There's so many stories.
Laurel:Yeah, I think Tina stole my answers. So camp every single year, hands down the confidence and independence that is built in that one week at camp last those children the entire year. They can now walk into their classrooms with their heads held high. And they feel more confident because they know they're part of a tribe. Now they're not alone. They learn more about CMT. We don't sit around at Camp talking about CMT, at summer camp. We're having fun, but they learn more because they're there and they have answers to the questions. They learn how to talk about it. They learn how to be in the world with CMT, and be different. And so that's incredibly wonderful. But mine also came out at the patient summit in Boston, I was sitting, talking with a woman who was similar in age to me were we were both 19. And she had come all the way from Western Canada. And this was her first time she's in her 50s, her first time ever meeting someone with CMT, and she just cried. She sat there and cried. And she couldn't believe everything she had learned. But more importantly, was all the people that she met, and she knew she was going to be okay. And it was really special. That's great.
Chris Ouellette:Michelle, you have any corrections? Yeah. And I want to
Gilles:tell you, it kind of spans the whole spectrum while we do I mean, on this store. So I could tell you dozens of phone calls, who would talk researchers top companies would call and say, We're gonna see empty now we want to work with you guys. We love what you've done. You want to use your toolbox. Want to talk to your patients. Now that was happening to me four years ago. Now it's happening on a weekly basis. Every one of those backflips in the office here because that's the whole strategy that's working right. Yep. And then obviously camp and the summit were incredible the energy and everything except the one a rabbit cam, they get inundated and spring a lot. I got a really warm welcome by everybody. The kids I credit well, they are so positive. And they are so mature. And so professional. They are future both at camp and the sun it I love those engagements, the energy, I think we were all overwhelmed by the selling by the tenants but the energy by the positivity by the reactions, the post COVID years are really exciting. And it's frankly is our new CEO and eater. podcasts on that. That's right, you don't
Chris Ouellette:have a new CEO
Gilles:who is suing you get to meet her I'm sure you'll do an interview with her this single fact that we're able to track someone or a caliber and have a quality to work on CMT. It never happened a couple of years ago. I mean, some at Harvard and MIT educated being part of bringing drugs to market it has been the CEO of several biotech companies, also happens to be a really nice personally and a great manager. VERTERE if two people are patients, the fact is we can't get someone that is too jealous. 70 Canadian legalization is incredible. It just shows that we are on a different level.
Gina:One more thing from this year, I'm sorry, this is very important to me. Okay. Yeah, one of the things that the CMTA does is when we're working with a pharmaceutical company, whether that is a pharmaceutical company that we've had a strong relationship with over the years, or a new pharmaceutical company, the patient's voice, as I think Israel and Laurel both have mentioned, but the patient voice has been an critical part in in researching and advancing research. We did a focus group this year, and it was four, I believe, to see. And on this focus group, I have never heard a patient be so open and share in the way that they did the vulnerability, and just the honesty and the passion to share their story. I was crying, and so was the pharmaceutical company, I will never forget that. And that is why I think that for patients to really make sure that they sign up to be a patient as partners and research so that they can to participate in focus groups where their voice could be heard, and in addition, possibly participate in upcoming clinical trials. So I just wanted to share that as well.
Chris Ouellette:No, it's great, you know, thank you. All right on 2024 What can we and our listeners expect from you, folks?
Elizabeth Ouellette:Three items each Let's go.
Laurel:Okay. Asin and research summit in Denver. Be there be there for the connection, the camaraderie the education managing CMT, the star research update, be there to meet the clinicians, the scientists, and the team be there. If you can't be there in person? Join us hybrid, we will offer it hybrid so that our friends from all over the globe can join virtually. What's the date on that, Laura,
Chris Ouellette:do you know that is we're doing
Laurel:a weekend now we are experimenting with a Saturday and a Sunday. So Saturday, September 7, and Sunday, September 8 in Denver, beautiful Denver who doesn't want to be here in September, and then we're going to continue with our lunch and learn webinar series education quarterly meetings virtually, which has been wonderful. And one new thing we're launching and Elizabeth, I know you're going to be really excited about this is we're going to take the emotional support group that's on our website. And we're going to do an online virtual emotional support group where you come to a meeting and you get some of the emotional wellness and mental health wellness tips that you need or just for the time to talk with others who have CMT. We're currently building what that group would look like and we'll share more information in the new year. I love
Chris Ouellette:it. I love it. All right, well, right to the point. All right,
Gina:Shane. Okay, coming on my end to 2024. There'll be community walks in cycles, people can look for to either participate, or it's someone can host their own Walker cycle in their neighborhood, you know, asked to support the CMTA. And individuals causes. One of the things if anybody out there knows of a foundation that offers grants to like programs, whether it be key up the summit, or maybe even a grant to support the research and a whole, I would love to know about them the CMTA we're looking for more and more foundations that could possibly support us. Yeah.
Chris Ouellette:Okay, that's awesome. Shelf by yourself as the chairman. Well,
Gilles:on the star side, I could talk for hours. But I think there's two major themes. I think, as Gina said, We need to raise more money because there's more and more demand, especially on the clinical side, because more and more drugs are going to hit the clinics, and there's more ready than ever, but there's still some work to do. The NIH funded a lot of us, so did we, but being ah, you know, those funds are ending. And so the ascent here will be taking over a lot of his clinical preparedness, money, and nothing could be more important, isn't it, we get all the great results on the right advice, it doesn't matter if he doesn't go to people. And that's what we're gonna be working on. And that takes a lot of money, you need the support. And the other thing is we're going to see more and more of those genetic therapies progressing, whether it's RNA therapies, traditional gene therapies, CRISPR, has a lot of activities. And I can predict exactly the result. That is milestones that are really important next 12 to 18 months, and I'm sure some of those will be disappointing, but many of those I think will be positive. We've seen great progress. If you combine that with the development of a clinical stage. You can see why we have whole new phase of star. Okay, yeah.
Chris Ouellette:Awesome. Looking forward to 2024. Right. A lot of great things going on, which is awesome. I know I'm fired up.
Laurel:Saying no rest for the weary people. No rest.
Elizabeth Ouellette:Chris, I think we shouldn't be wrapping up. Questions. We have time for this precious. Yeah,
Chris Ouellette:I think so. Yeah. And because we can make up time, I'm sure the producer will edit out all the things that you've said. So we probably have a few brief all the swear words, and you get an extra half. Yeah, it'll be like a 35 minute podcast. There you go. All right. First of all, ask the first one. This is for Gilles. Okay, Gilles, what is your biggest pet peeve?
Gilles:In life, however, you
Chris Ouellette:want to interpret that? Basically,
Gilles:I'm a very impatient person, universal living world. No, really, you're not.
Elizabeth Ouellette:So you think the world is moving too slowly? Especially
Gilles:the world of CNT research and breakthrough everything I've done in my life. This is so slow and so difficult and so but it's why we have to be so strategic and I think that's what we've done. You got to wrap it because system but sometimes it'd be nice oh, let's just do this thing and make it work.
Chris Ouellette:Okay, get one more sorry. I have to ask this because this came up too. So she'll if you are a car, what type of car would you be?
Gilles:When I was young, I would be a risk Bob. But I wouldn't sell a minivan.
Chris Ouellette:All right there. You heard it, folks. Race car to a minivan.
Unknown:He's getting older. I was a bike if he's okay,
Chris Ouellette:we'll move on. Liz. Oh, go for it. Aegina
Elizabeth Ouellette:if you can have a life time supply of anything. What would it be?
Gina:Oh my gosh. I'm terrible at these questions. lifetime supply of
Chris Ouellette:anything.
Elizabeth Ouellette:Grab a paper.
Gina:I catch up. Catch up. I love the
Laurel:scenes chocolate and peanut butter some though? Nah,
Gina:I love me some ketchup. Yeah,
Elizabeth Ouellette:beginning some bottles and catch up for Miss to our listeners. Some catch up. All right, those little pockets, big bottles, everything.
Gina:Condiments. let's
Chris Ouellette:promote our mailing address list. Oh and see how many of our listeners will donate cases and catch up to Gina's house glitter.
Gina:I should have said glitter glitter. It's ketchup. Do
Chris Ouellette:you want to ask the last one? No, you can't it. All right, Laurel. Truth. Have you ever made a prank phone call? Oh,
Laurel:yes, absolutely.
Elizabeth Ouellette:Several about one. Tell us about what you remember.
Laurel:Oh my gosh. Whenever little you open up the white pages and people and you say you were like what? 789 And we'd say is your refrigerator running or something? And they take us and you say, Oh, you better go chase it just ridiculousness. But yeah, I love to prank phone call. And your sheet says
Elizabeth Ouellette:simply people's houses. Have I ever sent pizza to people's houses? Oh,
Chris Ouellette:no, no goodness,
Laurel:I know. I have TP to house. This is like a confessional
Elizabeth Ouellette:for reformed. I love it. I love it. I know you're a little taster in you.
Chris Ouellette:So I guess in summary Lizzo in for our listeners, and feel free to comment. But the message here is these are real people, folks, these are real solid individuals that are driving every single day. They're committed to finding a cure. They're committed to communicating and building relationships with those with CMT, and others, driving research, just an exceptional support group. So, Alyssa, what are your thoughts? I think that came out very well today. Yeah,
Elizabeth Ouellette:I want to thank you. And what struck me most was that donors, and patients and volunteers, they're not just donors, patients, volunteers, their family. And we're doing this for our family Sam's use of bait family. And that makes me really emotional. But I've seen it, and you've talked about it. And that's who we are. We're family. All
Chris Ouellette:righty. Hey, Lou. So if someone wants to follow us on social media, where do they go? We have
Elizabeth Ouellette:a Facebook and an Instagram page CMC for me podcasts. We also have a YouTube channel, which is called Raw in an edited as well as our brand new Tiktok channels CMT for me, and pod page, www dot pod page.com/cmt. For me, okay,
Chris Ouellette:and you just set it. So to our listeners, if you have a good story, we'd love you to reach out to us and tell your story on our podcasts. And either write to us at info at CMTA usa.org. Or pitch your idea or go to our new website, like Lisel just said WWW dot pod page.com/cmt For me, or fill out our inquiry form on CMTA usa.org.
Elizabeth Ouellette:We also have a phone number if you want to call in and tell us about a story or tell us about somebody you'd like us to interview. Now the phone number has changed. So I am going to give you the new phone number 94123113529412311352. Give us a call. Yeah.
Chris Ouellette:And don't forget, leave us a review. We say that all the time. Please leave us a review. And you can leave that review by visiting Apple podcasts or go to pod page and leave it there.
Elizabeth Ouellette:Chris, we did get a review. I don't have it in front of me. I wish it was wonderful. She said I have finally found a place with a people I can relate to. And people that give me positivity and courage and motivation to continue every single day. It was a wonderful. We'll read it next time. No, that's cool. Yeah, no, it was awesome.
Chris Ouellette:It was so I just noticed I just got to review it. Chris, you are unbelievable on that podcast. We can't wait to continue to listen to you and 2024 So I was
Elizabeth Ouellette:also told you boot your sister because you're really a star. Yep.
Chris Ouellette:And I just said it's amazing how you single handedly keep this podcast going was the first thing to grow off. That is very good.
Elizabeth Ouellette:All right, folks, that lock in 2023 gift to the CME you guys, thank you so much for your time and gain strength laid there and thank you guys.
Chris Ouellette:Thank you, bye