Chordoma Foundation Research and Clinical Trials Discussion

Okay, so we're, uh, we have to get our morning presentation. However, we really want this to be a two-way dialogue zone that hopefully is, uh, really clear from the last presentation, really value perspective of those, those of you who are, uh, MSC integrating, uh, with not just And so our goal now is we have a 2004, was to use the next 20 minutes or so, um, for some group grains talking, um, to, uh, to get feedback and some perspective and ideas, um, that you all have after hearing, uh, presentations. So, um, at each table. There is a, uh, cable captain that will be impact, uh, nothing work on the baby. Cable captain to make a camp. Okay, it's wonderful. Cable captains are not accurate to, uh, get to your, uh, while the variety of cable, I was trying to Come here earlier when you just take a pet too? Yeah, uh, oh, you can rather you do it if you're here. Oh, oh, you're from your son. I was, but oh, but you're I, you know, not and take outs here. Right now, yeah, that's exactly upstairs now. Have on their phone in which they input the time to do minimal in the backhand as a certain party level. I joined Fatima Foundation in March. So I'm leaving the pre-minute research for some of the TBX of Recurry Drop Discovery was, uh, overseeing that. So my background is, uh, biotech, uh, business year in Boston area. Uh, working a lot of drug discovery. So one of the molecules I've worked for five years at a company called Parabolis. It's now trading, uh, another real tumor called as no extreme, and uh, the activation growth is as a fact that has, we are showing very promising jobs. So I'm really hopeful that by the experience in Job Discovery will help this our community here, right? Not a very important, uh, effect, you know, as they are taken by coming industry at this point. I think it's bad for the promotion that you have. Y'all coming here today to give us that feedback. So, um, I'm thanking you a good thing. Right, price. Very, very good, thank you. Um, so the main So there's what was the most encouraging or could be the most as far as what we see today like the future in advance or doing the research? Was there anything that still? I think overall, just general, all the information that's been given so far, it's just, uh, you know, just amazing what the technology is doing. What a state of care is, those type of things. That's been very encouraging for me, Martin. Um, you know, I've been, um, diagnosed since 2019, and just since then, things have just been so much more, you know. Yeah, Like I suppose to feel so much like just simply seeing that the wrap is going in the other is going up. This is my fourth conference. Um, I saw them hopeful and brookfall in California. It's a combination of, um, you were saying Prime and Yeah, just like I mean to have the top in a lot of like so there's one Right, right, yeah. More effective. And it's been shrinkage also like a nicer. Yeah, you're not doing a quality versus quantity and quality. Which to me, I feel is even more important than just quality life. Like, I mean, everybody wants that. There was a patient presentation yesterday as a researcher on behalf. I remember that, you know, he had this like two dimensional block, is like quality of life, the max is And they put star upgrade, and everyone gets there. Yeah, even long there are leaving good life at no move obviously, yeah. Uh, what hard every day is that? I mean, especially while, you know, so many of us are navigating, like, either treatments or those, like, I am anyway personally, I can take in so much information. So it's kind of related to the next question here, which is what would you like to better understand about the research while planning her? How can we help this look like that? My person There being some sort of visual, I don't know whether it's a video or a condensed sort of the same way that you would see a reel on Instagram that would give you like a one minute or a thirty second label. Um, not that the medical term shouldn't be included, but something that simplified. I was probably more labor. Like, even with me being in the medical, there are some things. Oh, yeah. I mean, that's a technical issue. I think probably the look fly fly on the screen to do that on that question. Like I, mentioned that. That might be where I read the level everybody talks. I would love to see posters of researchers that we did not see previous day. Like I mean, show us the posters. like even blackout, whatever we can't see, probably for the airport, not out yet. Nothing for it. I think it's just in the post. To this audience, so this research can be this public available. I think they were all still in this room yesterday, but now we took it out. I think the research alive, yeah. Like maybe even having that kind of over life, maybe one night, I'll have the researcher present a post around the Asian community on site. So if you want to I think that's also very motivating for the clients to really see a competition, you know, motivate them and be curious, curious about their progress, right? That's a great motivator for the research. To tie in what you said about, you know, everything being technical and bring it down, you know, a couple levels. I think there's also a information. Overload also. A while back you only had one or two days already. Now I think I had thirty-two. You know, if there was a way that you could, like, have an overall picture, you can, uh, talk to your medical phone college and say, hey, look, understand this is going on, have more understanding, and you can work better with them in the Galax one, that would be good for you. I wonder sometimes, I was speaking to Danny, like, I'm sure some of you guys like her, she's in the engagement engagement officer. Um, just because we're both performers and like create, like, video content, would it be a helpful thing? I wonder, uh, have this be a very simple straightforward here that tends things to be out with the person actually verbalizing that to you within, like, say, thirty seconds, and you know, like more like a straight up Is that gonna be something nice? yeah, like have speaker on camera and have everything, hearing that it's going, and actually maybe just distribute that after all. So I think it helps family members, yeah. Everybody involved in I think there was a way that they could go on a website or wherever and get that basic information. Be more willing to open up. Oh, absolutely. Um, I feel like we kind of tackled this one of barrier barriers or obviously as we need to accomplish the research forward. Um, and we also have how else you, how else do you envision patients and caregivers shaping and helping to advance their own Talking about keeping it, kind of real. Um, not great things, your area. Yeah, like the the bruns are great, but there's something else for. I'm always going to for Cordoma teacher or something, you know what I mean? Like for Cordoma teacher, if they're like a font three or even on the website of a like that's one of my I know right I'm not the only guy you need to read that's what I've always for I've worked on EC for time right was dying two thousand and seven or two thousand and seven I mean there's been nothing to everything but then I'm so Right. We have actually committed about a swag store on our website. Like we got a little cap t shirt and pins, like swag, so Yeah, yeah, Oh, yeah, we have a show. That's a great idea. I said restaurant, somebody was walking, oh my god, and like it gets like so few, and somebody traveling might say, Oh, I know somebody, right? Because now we need to make make more noise. Make more voice. Yeah, yeah. And that's what I told women that I want to come, number, uh- We have a eighteen year old daughter, so for eighteen years. She's in college now, and we're like, okay, that was confident. We don't have cats, we don't have craft college. It's the same thing with us. We have four kids and It was always the kids. Right, yeah. You don't want to do that on my time because I'm already wasting time on my life. What's that con? I'm right in the middle of that. I have two boys, fourteen and fifteen years old. Hero school. I'm kind of thinking about that bound going to college like three years from now. Like, I really want to keep my time and, you know, with them, like kind of like the new Or even once or whatever. And you can use your arms as your hobby. Any local streets there. When daily price, size for me, river, half a close season. With a QR code, and trying to get the information on YouTube and try to closer at the time. Very for the final one, is there any one particular item that made you feel comfortable about where the place are considered one aspect of? I think that's I make miniature bodies. I, I can see local. I started gone with everybody. Because I graduated where you're offers real thing. We are literally class and five years. That's great. Yeah, as research moves forward, how would you like the foundation to keep patients formed and involved? Would help them feel better prepared, and that goes when you heard clinical trial survey results, what felt the most true to your own experience or experience? So was anything surprising or different from your own I've never done it before. I mean, there's one that was like a team was not that interested, and so that is kept in our ways, right? Not that institutions and genuine, and it is nothing. So much in Facebook to work with. Uh, really, Uh, I hate to interrupt the conversation now. Hopefully, they'll continue over the last. Um, but I just want to take a couple moments, like two minutes, to kind of reflect on a few things. We're gonna go back and read every single comment. There's a lot, so I think just a few things keep looking. Real quickly that, uh, came through. Uh, uh, clearly, uh, a sense of hope, which is awesome to see. So many of us feel that right now, hope from Frankie Erie now, finally seeming like it's, you know, maybe a druggable target or overcoming this historical challenge, um, more options coming down the plate for, uh, recurring disease, um, more, uh, options coming. Refurcing and physics, but also the, uh, the new, uh, emerging therapeutic approaches. So I think a lot of kind of common, uh, comment keeps, uh, circul, circling around the concept of the book. Um, just, I think we cared with that or we've balanced with that is the practical reality, which is anything trials and taking advantage of these new hopeful discoveries. Uh, so quite a number of comments. About costs and barriers to travel that per se in closet trials and I think that's something that we hear really cloud clear and are gonna continue to try to find ways to help overcome. So hopefully the closet trial assistance program can help with that. Fortunately, through the generosity of a number, of individuals in the community, that program is currently, um. Well funded. In fact, there is, there are funds available right now for the taking for use. So if anyone will participate in a code trial and finances are a barrier, please do not get to reach out. There are funds there for that purpose, and we welcome anyone to, uh, to utilize that can all get into a clinical trial in sense. Um, but also if there are additional barriers. From, um, financial, et cetera, please let us know and talk to our eight and a half years. Uh, we really like to try to understand it important as well, what can we done to bring that, bring those barriers down as well as possible. The only one of them is opening up an additional site and the platform enable that. They next week the township convention it, but the pension is that it starts off opening at a mechanical site to cover Across the United States, and we're talking with a number of them expressed a lot of interest. Um, but probably we'll be able to start office in like four five or six site, but hopefully over time resources permitting and successful, then we can grow from there. Um, uh, and then finally, um, I think there was, uh, a number of comments around the importance of collaboration. And I think some mechanism there around collaboration perceiving more collaboration, but also as kind of reminder that it's important for researchers and clinicians to be in the same coordinating and collaborating that's kind of a role that we need to continue to play. So I think these are just a few of the things that on a quick scan kind of jumped out. I know you can store everything that, uh, Submitted or shared, but they really, really appreciate all. So they really appreciate the feedback and insight that we are gonna be studying and reading through everything that was, uh, submitted, trying to learn as much as possible, and you know, using that to influence our goal forward. But hopefully this is the beginning of the conversation, and uh, just kind of one quote time. So there are additional ideas. Having the questions come up, please feel free, um, to continue sharing those, uh, on the afterwards and see a member of the staff when the contact is afterwards a lot of survey afterwards. Um, so just a little bit of process you make, uh, we're gonna do, uh, the photo, um, sorry, all on Jim's gonna come, uh, There's photo out there, but you have to log on. Go ahead, so we can take your photo and then over there in just a minute. Pass your face photo.