Empowering the Chordoma Patient Community

Speakers who all have incredible stories are going to reinforce that sense of hope. Uh, so more from them in a second. Before I begin, just that housekeeping item. If you are a youngabillo patient or you are a young at heart, there's gonna be a dinner meetup after this session. So if you'd like to attend that, please meet at table number three. After, uh, Shannon does the clothing. Young adults, young at hearts, parents of dead adult patients, anyone wants to, uh, feel young, feel free. Thank you. So, uh, I'm gonna give a huge nut. Anyway, so my name is Kenny Dritton. I'm the best manager at the Cordova Foundation. And I've been part of this community since 2012 when my Uncle Mike was diagnosed with Cordoma. But I've been particularly engaged with the community since 2019 when I came on as headlentary. And one of the things that continues to amaze me about this community. Is just how strong we are. Now we are a small community, but we are a mighty community. And it is the strength of this community that has made possible all the progress that we've heard about today. And it is the strength of this community that has raised an incredible amount of awareness. Within and outside of the healthcare field. And most importantly, I think it is the strength of this community that's gonna make the next five years the most difficult in our history. So thank you for everything that you have done for this community. In a moment, you're gonna hear from four extraordinary speakers, and each of them are in their own ways. Going to tell you their story, and our hope is in hearing their story that you are going to be inspired to mobilize yourself and mobilize those around you in ways that you find meaningful in support of this community. Because the more people we can mobilize behind this effort. The faster we can run, the faster we can achieve progress that we all so desperately want to achieve. So I look forward to hearing from the speakers. I hope you do as well. When this is gonna work, and we have the four speakers come up, they're each gonna give you their presentation, and then after the presentation, we'll have five minutes of questions for that particular speaker. And then we will move on to the next. And to kick it off, we have, I'm gonna read this picture here, right? We have Danny Pike. Danny let's come up. Danny was diagnosed. Danny was diagnosed in 2019, uh, at just 21 years old. She was a volunteer peer guide and a member of our young adult support group, and she did such a great job and was so invaluable as a volunteer that we brought her on staff because we couldn't afford to lose her. And since then, she's been just an incredibly valuable member of our team. Wearing numerous hats right now, she's leading our Every Patient initiative, which we heard about earlier today. And I think what's most alien about Gaming right now is she's getting married in two weeks. Thank you, everyone. Today I'm going to talk about empowering our patient community to advance progress. So for those of you I have an IS, I'm getting fine. I'm for a patient. I'm also very lucky to be a team member at the CF full time. And what I want to talk about today is a really simple idea, which is that every patient matters. With this disease as rare as Prodoma, we've heard a lot about how rare it is. We already know a lot about how rare it is. We don't have millions of patients available to participate in research. We don't have millions of patients to raise awareness, to fundraise, to advocate, to help each other out. So the people we do have matter enormously. And for me, understanding that really started with my own Prodoma experience. I, like so many others in this room, know what it feels like to feel completely powerless in the face of this disease. Like so many other patients, my parents started with a misdiagnosis. When I was eleven years old, I told my mom I kind of marbled on my tailbone, and we went to the doctor and said, Oh, it's positive six, no big, but probably away in adolescence. Well, a decade later, I was still pretty uncomfortable, and it was getting bigger, and they tried to remove it, and they couldn't. And by that time, it was about the five golf ball. And I got a call from MD Anderson, and they said, Good news, bad news that was not assist, that's the programa. Good news, your first appointment with us is next week. So ultimately, I was diagnosed with the safer passage of Koroma at age twenty-one. To my final semester of college, and Dr. Larry Rhines at MBA Anderson in my hometown of Houston, Texas, made a planned, explained it to me and my family, my extremely concerned family with confidence in a way that was very easy to understand. And we all says, All right, whatever you say. So I was able to finish school and graduate. Awesome. Thank you, Dr. Ryan. And then I came home and had the big surgery. Uh, I, I was taken really good care of by the team at F. B. Anderson and by my very loving, supportive family friends, including guys NATIA, as giving me a. And I know it's weird to say that I feel lucky. Uh, my friends give me, uh, give me grief about that all the time. And I say I feel lucky. So if we're diagnosed with one in a million higher bone cancer, we'll still see about that, but. I was pretty lucky to have been treated where I was treated by the team I was treated by, um, to be standing here today, seven years later. So after the surgery, there was obviously the physical recovery, which was no joke. As so many of you know, I had to learn what my body could do again and adjust to everything it had been through, this massive trauma. But there was also the emotional, psychological recovery. I had to learn that every little step was a victory, no matter how small or silly it seemed. I learned that every day I would have a hiccup or a road bump or a frustration, and that was okay. That was part of the problem test. Just take time. And you don't get to decide how much time it takes, unfortunately. I was very impatient at times, but once I could kind of look back and have some Distance and perspective is really transformative for me. Um, I did seek out, uh, support not just from medical professionals around me, but from counselors, support groups, people I met through the foundation who understood the emotional ways of this journey. But I would say the big pivotal moment in my healing process came when I connected with the Cerdoma Foundation, uh, because I found other people who. Understood, uh, what I was going through. You know, suddenly I wasn't alone anymore. When I was first diagnosed, I remember thinking I'm never gonna meet anyone else who has this. And I'm so glad that I was wrong, and I'm in a room full of people. Uh, and the young adult group, we sometimes joke that it's like the coolest club that we all wish we weren't a part of, and what is the question on our sympathy? But this fantastic community was a huge resource to me. Um, you know, like, like so many people you know firsthand, you go in a treatment wanting to get rid of the tumor, uh, get rid of the cancer in your body, but you don't always think about what my life is gonna look like after the treatment. Um, and I, I'm incredibly fortunate my surgery was successful, um, but I had to put back together and process, you know, what had just happened to my life and how things were gonna be very different. So I think that's when I was first diagnosed, and how overwhelmed I was and how helpless I felt. You know, Cordoma, the first thing you read about it, it's a rare, complex, and incurable disease, and that makes you feel isolated and stuck. So once I saw what the Cordoma Foundation was doing for patients, I realized, you know, I can't change the fact that I've been diagnostic. I can't undo my diagnosis and my previous surgery. I can't control what my scans are gonna say three months or six months or a year or now seven years. But I could decide what I wanted to do with my experience. And through that kind of thought process, I took helplessness and turned it into empowerment, isolation, turned it into community. Feeling stuck and turned it into making a positive difference. And that brings me to the Every Patient Initiative. So this year, as part of the Foundation's big strategic plan, which you've heard a lot about, there's a lot of moving pieces to that. We have big goals, we're very ambitious, and I just believe we're gonna accomplish all of them and knock them out of the park. But we've been working to connect Personally, with as many patients and families as possible. When I say personally, I mean, I, I've called a lot of people. I've called a lot of people, and I've talked to a lot of new people. It's been amazing. In the past 24 hours, meet people who are like, you seem familiar to me, or I feel like I know your name. I said I'm probably in your female somewhere, probably as you're missed called, or hopefully not your stand calls as possible. Um, and I just want to thank you to every person in this room who's talked to me on the phone, who's taken the time to have a conversation with me. You've answered my call or returned my several voicemails and told me about your treatments. You've asked me questions. You've told me about your scams. You've told me about your frustrations, your families, your jobs, your pets, your vacations, all kinds of things. And I have to say it's my favorite part of the job, those conversations. Because the goal is for me to personally connect with you, to listen to you, to build a relationship with you, and to help you find opportunities to get involved with the foundation that are meaningful to you. I want to know how you're actually doing. What matters to you? What do you need? What is something the foundation can do for you? Or maybe there's something you want to offer to community. And if we haven't chatted yet, I really hope that we will. Um, in a few slides, my email will be up there. Find me. I'll give you my number. Uh, our mission here at the CF has clearly always been community group freedom, but truly, we, we need everyone. I need all of you, and I would love to speak to every single one of you. So the conversations that I've been having have been reinforcing and deepening something that the foundation has already understood for years. Listening matters. Uh, these little breakout questions we had to now today where we have to just talk about kind of what did you take from today? What's the question you still have about today? Great, reinforcing that message. Uh, and this is just a continuation. The aggregation initiative on the listening foundation is always done with a concerted effort not only to to hear what you have to say, but to connect you with resources that might help and to Learn what we here at the foundation can do to make those resources better and to make them more accessible and make sure that you know that they're there for you. So after hundreds of conversations, I have to say that there are a couple of things that I have heard time and time again, which is, you know, uncertainty doesn't disappear once retreatment ends. You know, people who are five, ten, even twenty years out can still have questions about. Surveillance, recurrence, what the future looks like, what the guidelines are, what happens with a new symptom, things like that. I've also learned that, uh, people want a connection with someone who truly understands. Verdoma is a very unique disease. And according to a patient recently just straight up said nobody understands Verdona, like a Cordoma patient. I think that's very true, and I'm happy to be, uh, for any of you the patient that you can connect with and talk to, uh, if you need to about anything. One thing that's interesting, though, as much as no one understands Pudova, like Pudova patients, people want to be known as as people, not just as their diagnosis, and I can definitely relate to that. Um. Cordoma has brought us all together into this room, which is amazing, but there's also so much freedom in remembering that Cordoma is just a part of our life. I like to say it's a chapter, it's not the whole story. Not coming from someone who chooses to work a job where we have to talk about Cordoma all day, every day. But oftentimes also we'll start out talking about surgery or radiation or, you know, finding the right doctor, and we end up talking about. Something silly that their dogs did that day, or you know, how their oldest child was graduating high school next week, something amazing like that. And those moments are, are truly a highlight for me. Uh, but finally, what's especially, uh, relevant to what I'm gonna talk about today is something that I hear from a lot of patients is, uh, people want to meaningfully contribute, they want to give back, they want to take part, they want to Be an active member of the community. You know, I've had people tell me, hey, I'm actually doing okay. I don't really need anything, but is there anything I can do? And sometimes that phone call, that personal indication is all that it takes for someone to become more than just a recipient of information, uh, to become an active participant in the progress. And participation does not mean. Anything necessarily. So not to be something you, uh, sometimes the most meaningful thing you can contribute is just your experience. So that might mean joining one of our Zoom support groups, uh, connecting with someone through the peer guide program, uh, participating in Cordom Connections or another online community, or sharing your uncommon story on our website, so that someone who's Newly diagnosed to see that maybe someone else has walked a similar road, and you might think, oh, I'm just sharing my story, or you know, I haven't had it as bad as some people, or I've had it in a different place than other people, but someone else might read that story and think, I'm not alone, and that's invaluable. Um, as we've discovered, empowerment often comes out of connection. So as Puerto Foundation, we really understand the power of shared experience and mutual support. Which is why we've developed such robust online communities and support programs, and why we have the International Cordoma Community Conference. All of those things are designed to help all of you connect with each other. You know, when I was diagnosed, I remember thinking, never gonna be anyone else with Cornova. And like I said earlier, I'm just so glad I was for home. Everyone I've got to Cornova happens to be really cool. And I don't know if there's a scientific correlation there or not. Fine striking thing is more than just a coincidence at this point. The people I met in the community are the best people that I've ever met in my life. And the wonderful folks I've met who have participated in such a variety of beautiful ways, you know, your contribution doesn't have to look at anyone else's. And when I look around this room, I feel grateful for the new faces that I've just met today, and I have some old friends here that I now consider. Old friends. Um, I'm, so grateful for that. I think the connection is true that you make the friends on. So let me go back. Let's see. Oh, there we go. Yay! Thank you for that. How do you believe in that? They made it all. Uh, our story that Koruma Foundation has always been one of patients and families coming together to accomplish big things. Ah, how we prevented around the kitchen table with the patient who just found a lack of resources. Decided to do something about it. So your efforts, no matter the size, will have a tangible impact on just pronoun research, but also care and patient resources. Fundraising is obviously one easy way to get involved. It's rewarding and connection build ways make a positive impact on a mission that you're connected to. You can do it in a way that you're passionate about. We're all working towards. This common and very urgent goal together, and I, I love this three brings on the slide: empowerment, community, support. That's what I see in our foundraters. It's about building relationships, strengthening community bonds. It's someone saying, Hey, this disease has affected me or someone that I love, and I'm gonna do something about it, and I'm gonna invite my entire network and everyone that I know to. Join me in that. So maybe that's, you know, a race or a golf tournament or a birthday party or a memorial fundraiser or something completely new I've never heard of, and I challenging, surprise me. Uh, those things are all amazing, but nobody has to create a huge event fundraise, and nobody has to figure it out alone. I can help you brainstorm. I can help you create a fundraising page. I can provide you with a full toolkit, troubleshooting technology, logistics. I can connect you with other successful fundraisers, help me find something that finds meaningful and realistic, uh, for you to do. And my emails are on the slide, so feel free to take a picture and email me anytime. Uh, come find me after my clock. I, I really do mean it when I say I'm, I'm here for all of you. In any way that you need, whether that's questions you have, feedback you have, or you just want to listen to you, happy to hear. Fundraising gives us a really concrete example of what participation can do, and we've pulled some really fascinating statistics that support that. So cross peer-to-peer fundraising of the Peru Foundation, we've had more than ten thousand unique donors, which is amazing, but even more amazing. Nine thousand seven hundred and five of them, ninety-four point two percent of them made their very first gift to the foundation through one of those fundraisers. And that doesn't make me think, uh, you know, most of those people probably weren't sitting at home going, you know what? I'd like to find a rare loan growth and money thin. They, they go for them, they used to come up with a new location, a new apparent, a new house, they knew. specifically a friend, an uncle, a cousin, and someone they cared about invited them to participate in this mission. And when we look at our donor community, uh, in in general, 21% of donors are personally moved to the foundation in general through a peer to peer fundraiser, and that's huge. You know, it starts with one person decided to do something. So their impact is far beyond that action. They bring new people into this community, and some of those people will continue to support the foundation long after that original fundraiser is over. So just know that in whatever way you choose to contribute, your impact is so ample poppy. Uh, but there's still enormous opportunity as a I have more than four thousand actual patient households, and I will call all of them, that have never held a peer-to-peer fundraiser. And nobody expect all of those people to fundraise. That's not the point. But imagine what could happen if just one out of ten of those people decided to give it a shot over the next year. That level of participation could generate over a half a million dollars in new. Largely for people who have never heard of or supported the Corona Foundation support. And the really exciting part about that is that a lot of those people don't just become donors to that one fundraiser. They become a part of that community. We have a lot of people here who are really talented at inviting people to participate in things, and have a lot of people who care about and love them, want to help, and want to support. They learn why this work matters when they read about what we do. Some of them will stay involved with the foundation for a long time to come. Every fundraiser is a representation of somebody saying, This is something that matters to me, and I'm inviting you to care about it too. And when you multiply those individual efforts across the community, it becomes incredibly powerful. A typical fundraiser brings in at least 12 new donor households. Into the effort. So you don't need hundreds of brands for an enormous network, although it's awesome if you have one. You bring in 12 new people, you make one into 12. That's a crazy multiplier. And fundraising, again, doesn't have to just mean, you know, writing breaks or hosting an elaborate event, although I do love to attend those events. You can create a personal fundraising stage online on our website for the ECU. Do it for your birthday, for your surgical anniversary, your treatment anniversary, and you can just share it with your friends and family on social media or via email to provide you with all the materials to do that. If you shared real impact, and that's the ripple effect that we really want people to grasp is that one person takes one small action, and suddenly more people know what Cordoma is. More people are part of the mission, and therefore more resources are available to move products forward. And fundraising is just one example. There is no single right way to participate. When I first got involved with the foundation, I made some t-shirts and raised, I think, like $2,000, but I also participated in the new support group and joined an Instagram chat. Uh, so maybe you, choose that now is the time you want to share your story on social media. Maybe you talk about Koreoma with someone new that you haven't. Maybe you decide to get involved in research and participate. Maybe you reach out for support and ask to get connected with a peer guide. Maybe you volunteer to become a peer guide. Maybe you join a fundraiser. Maybe you start a new fundraiser. You become a monthly perseverance pledger, or you just shift something you've learned today with another patient here and continue some of the relationships you started to build here today. On their own, I know those actions feel Small, but no drop in the pond just ends where it starts. It reverberates outward. So one conversation can create awareness. One story can help someone feel less alone. One fundraiser can bring an entirely new network into the mission. One raiser to participate can contribute information about moving science forward, and one person choosing to get involved can inspire someone else to do the same. The impact of your involvement extends far beyond what you will see immediately, you know, building wearing, strengthening the community, improving patients support, generating resources, moving us closer to better treatments, and ultimately tours. Every minute you dedicate, every conversation you initiate, however awkward, every dollar you raise has the potential to change the course of this disease. You're a part of a very powerful community of advocates, and together we are making a difference in the proofs in the What we heard all about last night off today. That brings us right back to the Ever Patient Initiative. My goal is to make sure that every patient knows that what you can do matters. What you can contribute matters. And I want to help you find the way that you want to get involved. I just want to send my deepest gratitude to each and every one of you here. Thank you, you know, for your attention to all these talks. I know this is a lot of information today. Thank you for your courage with everything you share that's vulnerable and offensive and scary. Thank you for your willingness to engage with and support the Cordomo I really encourage each of you to carry the spirit of today's gathering into your daily lives and just continue to share, continue to support, continue to reach out. Continue to advocate, and most importantly, keep these connections that you've made today, keep them alive, and continue to strengthen them. When I think back to myself at age 21, scared, recovering from a life changing surgery, and seems like Cordoma had taken control of my life. I wish I could tell that version of myself what I know now, which is that, uh, none of us are powerless. You are not powerless. I am not powerless. And if we can make sure that every person affected by Cordoma understands that they have something meaningful to contribute here, and that they have the opportunity to find a way that feels right for them to get involved, just imagine what our community can accomplish, can continue to accomplish. Because there really is the brighter future ahead. There are better treatments coming. There are more opportunities to protect. And research coming, there is stronger support for patients and families coming, and ultimately there are more and more reasons for hope every day. But the future isn't something we wait for, it's something all of us have a goal in building. Every single one of you here today matters. Every action we take matters, and every single one of us can help move progress forward. Together, we are not just survivors. I firmly believe that we are source of nature. We're being a hope because we might be one in a million, but we are never truly alone.