Latest / The QuadCast / The Status And Momentum of SCI Research Funding, With Matthew Rodreick, Executive Director of U2FP

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The Status And Momentum of SCI Research Funding, With Matthew Rodreick, Executive Director of U2FP · The QuadCast

• John McAleavey: and welcome to the latest and greatest edition of the Three Men and an SCI podcast. I'm John McAlevey, joined as always by my colleagues Barry Monroe and Sasha Rabchevsky, and we're thrilled today to have with us the executive director of the Unite to Fight Paralysis Foundation, Matthew Rodrik. Matthew, thank you for joining us today. M: Thanks gentlemen, happy to be here. John McAleavey: Yes, if you could, Matthew, I know that I sort of short-shrifted you there with just the one title. I know that you're quite ⁓ an accomplished man. If you could tell us just a little bit more about yourself and then also about the Unite to Fight Paralysis Foundation. M: Thank you, John. I'm just a dude. ⁓ So yeah, of course I'm the executive director at U2FP. ⁓ That's how I know both of these gentlemen, Barry and Sasha, who happen to be on our board of directors. And ⁓ we do quite a few things ⁓ in the SCI space from our annual symposium to our podcast called Curecast. John McAleavey: Hehehehe Barry: Yeah. Sasha Rabchevsky: Yeah. M: and our legislative work across the country at the state level. And now in the last year at the federal level, we do a lot of educating around the science and particularly the systems around the science. And then we work with a lot of clinicians and scientists and other foundations ⁓ looking to address some kind of strategic issues that we see all related to our mission. ultimately to cure paralysis. John McAleavey: You also happen to be the father of ⁓ a son who unfortunately suffered his spinal cord injuries. A very talented singer and songwriter. So why don't you tell us a little bit about your son? M: Yeah. Yeah, so I have three sons, the oldest of which is Gabriel, who also goes by the name Freak. That's his moniker, his performance moniker. He is my favorite artist, ⁓ singer, musician, ⁓ writer, dancer, choreographer, kind of all the all this stuff lives here in Minneapolis. Not too far from me. Actually, I saw him. He had a show just Saturday night. ⁓ kind of connected to the no Kings rally, but in locally, like in the neighborhood, ⁓ had a 10 piece band on a big stage was fantastic. ⁓ and then I have two other sons, and the youngest Jordan. and we are all of us, musical family. So I also play music, a gig around Minneapolis with some friends of mine and I keeps me sane. ⁓ I was just talking to one of my staff that it's one of the few times that you can sort of stop thinking about this work. And that's why I do it and why I keep doing it. It takes me away for a little bit. ⁓ Turn up my amp and get on stage and scream into a microphone. John McAleavey: Yeah. Barry: you John McAleavey: A nice out shoot, right? It gets you off to do some other things, like you said. That's great. A nice ⁓ way to to de-combust a little bit. So, well, I hate to bring you back into the fight again, but ⁓ the first topic we wanted to hit on is the fight. Sort of where are we in this fight? I know as someone who is in the community, first of I want to thank you for all you're doing. Barry: Thank M: Yeah. Sasha Rabchevsky: Okay. Barry: you Okay. John McAleavey: on behalf of all of us. ⁓ I know that you all were down in the Washington DC area just in February and a lot was going on. know that speaking with Barry and Sasha, they were there as well. ⁓ If you sort of could summarize the lay of the land as far as SCI funding goes and then maybe tell us a little bit about some of the ⁓ DC roll on capital and how that all kind of went down. M: Sure. Well, mean, it may be best for me to look through the lens of our symposium. It was the 20-year anniversary of United to Fight Paralysis. And we decided early on in planning the symposium that we wanted to not necessarily really celebrate our 20 years, but actually reflect and ask some hard questions about ⁓ where we've been. where what we've learned, where we are today, where we need to go, what we need to do differently to get there. ⁓ Those were our sessions and we invited ⁓ quite a few folks from across the SCI landscape, people with spinal cord injuries, research scientists, clinicians, companies, funders. was a very, I think it was a very illuminating meeting. I think that kind of time we took to reflect on what's happened in the last 20 years and how much, I mean, you know, if you can hold these two things paradoxically and tension, how much has changed, but how ⁓ far we have yet to go or how at the same, at the same time, how much things have changed, how little they have changed in other ways. John McAleavey: Right. M: And I think that was one takeaway, which is always our effort to really try to ask the questions that ⁓ require answers from everyone. know, every, and I'm, what I mean, everyone, mean all the different kinds of players in this space and the way they look at this problem, the way John, if you were to ask ⁓ a neurosurgeon or if you were to ask them stem cell biologist, or if you were to ask a person with a high level cervical injury, or you were to ask a physical therapist, how would they answer that question? Where are we? We need to roll up a kind of collective answer so we know what the hell is going on and what we need to do and where we need to go and where we need to put our energy. So we did that in our meeting. And then at the end of our meeting, we took almost 110 people to the Capitol. with pre-scheduled meetings. think we ended up with about 70 meetings with congressional offices and all of it initially was predicated by the elimination of the SCRP program, the Spinal Cord Injury Research Program, which was a $40 million ⁓ federally funded research program that was eliminated last year. And a couple of weeks before our meeting and before all our congressional meetings, was reinstated. do in good portion to all of our efforts, along with the Reeve Foundation and United Spinal and Craig H. Nielsen and NASCIC, PVA, some of the model systems with all those efforts at work. We were able to reinstate it to 33 million. So we had to pivot our meetings to a kind of thank you. And then the difficult part of saying, but it's still not enough. We were going to ask for more than John McAleavey: Mm-hmm Barry: . M: 40 and so we're still asking for more. And that was essentially our message. ⁓ John McAleavey: Yeah. How about Sasha and Barry, what were your impressions of being down there also with Matthew and ⁓ you know how everything went down? Barry: I'm going to jump in first because this goes back to a nagging observation question that Matt and I kind of look at each other every year after symposium. So what are we going to do with all this energy and what can we do with it? And I got to say, I've been involved, think, Matt, you and I have known each other for about 10 years and I started going to the symposiums. And I got to tell you, the U2FP used to be called Working to Walk and now it's Now it's called the U2FP symposium is one of the best ⁓ meetings, conferences, symposia for people with spinal cord injuries because it actually involves the room is full of people with SCI and it's geared towards that audience and the chance to participate is it's very interactive and a lot of work comes from ⁓ Matt and his team making sure that the people on the stage giving their presentations know that the questions are coming and they know they have to speak to us as people in chairs that way. Now that said, every year after one of those, we're all excited, we're all pumped up. And so what are we going to do with this? What's the next step? And, and I got to say, this was by far one of the most effective, ⁓ felt satisfying piece. And I'm a Canadian and here I am on Capitol Hill, you know, ⁓ pushing it, but the energy that came out and then they, the excitement. M: Mm-hmm Barry: Matt, you could say all the participants and Sasha, you share your stories, but it was so passionate and people were so invigorated. And ⁓ at the same time, knowing, holy hell, we got a big hill to climb here. It's massive in terms of what we need to go forward. But those are my thoughts and it was just a great, great opportunity. again, let me say thank you to you and the team, Matt, you did a great job. Sasha Rabchevsky: I echo what Barry said, but I kind of want to bring it from a different perspective is that while yes, it was an ability for people with spinal cord injuries to kind of get in on a meeting and talk with the experts. It was the first I was born and raised in Washington, DC. So when I gave the talk, we gave my end of the conference talk, I was just amazed at how many spinal cord injury researchers came up to me and said, in effect, I get it now. Now, what do they get? It's not that they get like, we're going to join us or, it's like they get what the movement's all about. They get what we're trying to do up on the Hill. They had never been at any kind of advocacy movements. so, and I think that for me though, it was kind of sort of me talking out to my scientific peers that were in the audience and even people who had preceded me who were giving talks way before me in the intellectual series for that symposia is that it gave me a sense of, I've been wanting to tell you guys or I have. John McAleavey: Yeah. Sasha Rabchevsky: been telling you this for years. It's just that this year it just coalesced and we were able to, timing was right, show numbers and show people dummy stats that most even congresspeople were kind of stupefied to see you know like at the ridiculous amount of inequities there are for our field. So going back to what Barry was saying is I think there was camaraderie. was a level of leveling the playing field for a lot of people. I don't mean leveling it. That's not what saying. Different perspectives to the same lens, I think. Barry: I won it? Go ahead. John McAleavey: Matthew, what did you think, Matthew, of the congress people? ⁓ Did it seem like you were speaking a foreign language to them when you were bringing up about spinal cord injury and all that entails? Probably they just thought that, ⁓ spinal cord injury means someone so-and-so can't walk. They probably don't know all the other intricacies that come along with it. How did you find them and were they receptive to your message? M: well, I can only say like, and, you know, we were broken up into multiple teams of people and I had a team of, ⁓ I think there were five of us and we had, ⁓ I think we had seven or eight meetings and all of our meetings were very, ⁓ the, the offices were very receptive. as Sasha was pointing out, most of them were quite surprised. John McAleavey: Okay. M: at the data that we were sharing with them, which isn't uncommon. ⁓ We're kind of used to that in the last, you know, I've been doing this for a dozen years or more. ⁓ And, you know, our teams, we tried our best to put teams together that had a scientist, a clinician, a person with spinal cord injury, and in a few cases, a company, we had a couple of companies, ⁓ John McAleavey: Right. M: that joined us. I think everybody was very receptive. At the same time, I think it was indicative of how much more work we have to do. I think one of the sort of pivot points is for the folks that understood something about spinal cord injury, specifically in disability more broadly. there's not been a lot of advocacy specifically focused on research and, and specifically focused on research that isn't just improving the kind of care that people get today or the kind of access, but actually transforming that. In other words, research that will deliver restorative treatments, curative treatments, advance medicine further. ⁓ that there's a gap there. And I think that's been clear to us over the last year, and was an excellent opportunity to bring people into that dialogue and get pretty good response. John McAleavey: Mm-hmm. Barry: Matt, want to ask you, I want to touch on what you just said, the gap and it begs the question, what can we do better? How do we move this thing forward? And there's something that you've been speaking about in public a few times and I maybe ask you to share with us how you define the difference between advocacy and activism. Because I'm now on the activism train. The advocacy piece is... Sasha Rabchevsky: Thank M: You Barry: One sounds more passive, very important they are, maybe if you can speak to that because I think the way you describe that tells me almost the evolution of us as a community. If we want to move forward, we have to start thinking. Sasha Rabchevsky: you M: Yeah, I appreciate you asking the question. You know, really came from my back in 2019, along with you guys, you know, we were part of the team that spoke at the SCI 2020 the NIH meeting. And they carved out a session called with us not for us. And we presented talking about a number of different things relative to the the SEI community. But for me, I was very much focused on this notion that we need system change, not just, you know, the changing of your mind, or the changing of your how you think about spinal cord injury or the changing, you know, really, there are there's a system problem here. And I think ever since I came into this space, ⁓ it took me a few years to kind of begin to parse out what that meant. And so the distinction back to your question, Barry is like, I think of advocacy as a kind of raising awareness. You know, you need to understand the spinal cord injury community better. We need to go explain to people like The question you asked, John, it's more than walking. ⁓ you can't walk, right? It's more than that. We need to, we need to help the broader, whoever the decision makers are. So if it's a legislator or a funder or the culture itself, better understand, ⁓ our community and what it, what it really is. Activism I think goes maybe a few steps further. to recognize why are people incentivized to think the way that they do? why are scientists held to account on how many papers they publish and in what journals they publish them and how much money they got from, ⁓ foundations or the federal government or how many students they trained and where their students went. Why are they not incentivized to cure paralysis or deliver therapies for spinal cord injury? It's not the scientists fault. It's the system that incentivizes them. so activism in my definition and very much kind of breathed into the DNA of U2FP is that we want to change systems. We don't want to just change people's hearts and minds. We want to change the systems that influence their hearts and minds and actions. And that requires activism. And sometimes that means you're a little more ⁓ aggressive, not aggressive in the, you know, ⁓ yelling and screaming, moaning and fighting, but aggressive in the sense that we are going to go into places that maybe we traditionally haven't been and propose change that maybe no one else has proposed. John McAleavey: Right. M: And that might ruffle some feathers sometimes. And sometimes it has actually. But so what? I mean, that's what we're here for. John McAleavey: What? Yeah. Barry: So what? Sasha Rabchevsky: Yeah, and I think I'd like to comment on activism also. If you think about it, you're it's happening now. Activism is attrition. It's war. It's you got to keep at it. Advocacy is a different beast, but activism, those who are at the front line like Matthew and I consider myself and Mary, that's you've got one career, but you've got another thing going on here. It's a very, it's active. You're taking an in to your soul, at least I consider it that way. John McAleavey: How, Matthew, how would you ⁓ instruct just the regular Joe that's at home with a spinal cord injury that is not an activist, is not on the front lines, and is just living their life and maybe going in for tune-ups for PT and OT here and there? How would you suggest that they sort of ⁓ get in the fight if there's any way to do so? M: ⁓ Well, that's been a that's been a lingering question for us in our organization for a long time, kind of like Barry alluded to. think when I took over the organization, ⁓ my predecessors were consistently asking, ⁓ what do we tell people to do? How do we get them involved? What direction do we point them in? I think it all begins with ⁓ a kind of reflection, which really starts with, ⁓ understanding where you are as an individual. ⁓ you know, obviously if there's someone that, ⁓ is, is happy with where they are and who they are and, and the horizon in front of them, then maybe they don't want to become involved with us. ⁓ but if someone is looking to the future and saying, boy, I'd really, ⁓ I'd really like to improve my bowel time. I'd really love to not cath anymore. I'd really love to have an orgasm. I'd really like to not have neuropathic pain, ⁓ all the way stacked up to a boy. I'd really like to be able to stand up out of my chair. if anyone out there is, has any of those thoughts, Barry: . M: then I think throwing your shoulder to the wheel in whatever way you can is, ⁓ would be of great value to organizations like ours and others. And a lot of that starts with understanding the space because if you don't understand the space, then you may be wasting your efforts or your money or your time. And that's not something that we John McAleavey: Yeah. M: ⁓ I certainly it's not something I want to do. I didn't get into this and I don't do this work, ⁓ because I like to hear myself talk or I want to, you know, be able to tell people, I run a very successful net positive nonprofit. I don't really give a damn about any of that stuff. I give a damn about our mission and our mission is to cure paralysis. So, ⁓ how do we get there? John McAleavey: Right? M: you know, in the ways that I've already described, but to your point, John, we need more, we need more shoulders and hands and wheels on wheels ⁓ to leverage this. John McAleavey: Yeah, hop in the water's warm. We need your help, right? Yeah, and what now? Where do you suggest that they go? I mean, do they? Is it? Is it with writing to their to their, you know, Congress people? Is it going to events? Is it going to stroll and rolls? Is it, you know, petitioning their their rehab centers? Where is the first place that you would send them? Sasha Rabchevsky: Yeah. M: I- Barry: . M: Well, again, I think, you know, it's really ⁓ it's really dependent upon the network that they have and who the people are. So, yes, I mean, we we pretty regularly ⁓ ask for people to call or write legislators. We are pretty active. We just finished the session in Wisconsin where we have a five million dollar bill that we didn't get through again. Barry: you John McAleavey: Right. Barry: you M: But we're going to pick it up again ⁓ starting late summer. And when the session begins in the fall after the elections, we're going to ramp up and we have dozens and dozens of people in Wisconsin that are engaged in that effort directly, going to the Capitol, meeting with legislators who've been deep in this effort for a few years. But we always need people who are ready to write an email or make a phone call. The same goes for our federal effort. Barry: Okay. John McAleavey: Sure. M: that we have just started and are ramping up to increase funding for the programs that I mentioned earlier. We're also working very hard now. ⁓ I mean, all this past year, we have been hosting a regular bi-weekly call with us, the Reeve Foundation, ⁓ PVA, Paralyzed Veterans of America, NASCIC, ⁓ Sasha Rabchevsky: Nielsen. M: United Spinal, Craig H. Nielsen Foundation. ⁓ We are now in the process of pivoting from our symposium and capital role into developing what we're calling a national plan. Part of the problem historically with the spinal cord injury community is, as you guys, especially you older guys know, I don't even think the younger kids coming up know it so well, but there's always been this care cure divide. And it's kind of come out of this scarcity mindset that we don't have enough money for research. need more curb cutouts and we need more voc rehab and we need better rehab and we need better Medicare payouts. And how can we be asking for more research? And then on the research side saying, well, you know, if we could, if we could eliminate catheter usage, maybe we wouldn't need so much. coverage or, you know, or, I mean, that tension goes on, but it all comes out of scarcity. Right. And our view is that the pie isn't big enough. So let's make the pie bigger. And so this national plan would encompass all those things so that when we go to a congressional office or an administration or the NIH or the FDA, that we come with not competing interests. John McAleavey: Yeah, yeah. M: but an understanding of the whole problem of spinal cord injury. Is it access? Yes. Is it Medicaid and Medicare coverage? Yes. Is it better catheters? Yes. Better wheelchairs? Is it ⁓ better science that delivers therapies that are meaningful and restore function? Yes. It's all of it, right? Is the caregiver problem a part of that? Yes. All of it is all together. So let's have a cohesive plan that is not competing with any interest. John McAleavey: Yeah. M: but is rolling up the whole sort of ball of wax into one message. John McAleavey: So you're all reading off the same sheet music. That's terrific. How about Barry, did you want to take us into our next section about ⁓ no data, no problem, all that stuff? M: Exactly. Barry: Yeah, I love that. I heard this expression a while ago is that ⁓ in session, I we we had our rants off off the air on this one over and over again. It's it's one of the things that manifests itself when we're going on, you know, speaking to the congresspeople on Capitol Hill was they didn't know they they don't know what the problem really is. And I'm finding that in any kind of attempt to change policy and actually get funding. They like to see stats of some kind. They like to see data. And I heard an expression, I lived by this for the last couple of years, it's like no data, no problem. Meaning you can't show me what the problem is with data, it's not gonna resonate with me and it doesn't turn into an ROI or whatever it's gonna be. So that being said, I think we can agree and Sasha, please jump in. M: Yep. Yeah. Sasha Rabchevsky: Yeah. Barry: The problem with data is we have a real challenge internally on our own data before we even go to these guys. We're so underestimating what things are, but maybe speak to that, Sash. Sasha Rabchevsky: Sure, so, you know, the thing about time is that you can do retrospection. And so what we're starting to see is that ⁓ the sense of urgency that we're talking about, that Mary talks about, that we've gone public about. I think that we've kind of in a way been apologetic to funders and people saying, oh, please, sir, can I have some more? You know, it's almost like we don't want to piss off those who are potentially going to fund our efforts. But at the same time, our efforts are underrepresented. So for instance, when I want to do a registry of sorts to find out how many people in my area have a spinal cord injury, well, That's going to be tough because that's a lot of it is class of, excuse me, protected information. So how do we share and get true numbers? Well, we kind of estimate. We use centers of excellence scattered across the United States. Don't get me wrong, they're excellent centers, but that's because they're excellently funded. Okay, there's a catch-22. You can't be funded unless you're an excellent center, meaning that you have all from the time you're injured to the time you're at home, they have the continuum of, and I believe Kessler is one of those guys, as matter of if I'm not mistaken. So, but. John McAleavey: Yeah. Sasha Rabchevsky: Kessler is not a sample population, for instance, is nothing like it is here in Kentucky. So again, that's something that we're trying to, I don't know how to do this, but Barry actually has some efforts that are going on called, I don't know if you want to go into PFDD, but we need to start, number one, showing our numbers and the value and the burden of cost in society that we have. And then secondly, how much by helping us. you help a lot of society because a lot of us fall into the same umbrella. Because if you think of spinal cord injury, number one, if you've got quadriplegia versus paraplegia, vastly different, but you get lumped in a spinal cord injury train, right? That's very distinct because the outcome measures and the amount of money that it takes to survive, quote, unquote, with the cervical versus the thoracic spinal cord is astronomically different. Yet it's not treated necessarily that way. And so how do we... without a lot of data is out there. A lot of data is out there. How is it? What's the incentivization? guess is what Matthew is working with. have to get people to put this in repository even from self reports. For instance, if I want to report, if I want to submit my data voluntarily, how do I get it centralized? That's where we're again, Matthew, you may want to speak to this a little bit more because I know you've been having discussions with bigger groups. ⁓ But that's what I see, John, is one of the problems is that if we don't have the right data. We cannot effectively advocate for ourselves because we don't know what our numbers are. Therefore, we cannot convince the politicians or those who hold the purse. John McAleavey: Yeah. M: Yeah, I think, you know, this is ⁓ a really critical question and, ⁓ it's of the moment, ⁓ increasingly, this came up purposefully in our meeting, ⁓ because we've been working on this for a while. ⁓ we, we really, I mean, actually all the way since I got into the space to begin with, you know, I, my, my beginning, work started in St. Paul, Minnesota at the Capitol trying to pass a funding bill. And pretty quickly did I realize, well, wait a minute, nope, there's no registry in Minnesota for spinal cord injury. How do I find out how many people are living here? And then I, you know, of course I find the National Statistical Center at UAB and that's not broken out by state. So I have to maybe guess and I'm thinking, boy, this isn't good enough. Like what if What if somebody is going to ask me this question? Some senator, you know, testifying at a hearing and I don't have data. And so I did the work back then. It took me quite a while working with the Minnesota Department of Health and I found a couple of really helpful and invested statisticians ⁓ created an algorithm and a data query to get a very defensible number for the number of people living with a spinal cord injury. Sasha Rabchevsky: Right. Barry: Thank M: in Minnesota. And then I did that for a couple of other states using that same, I have a healthcare background. I worked in an ER for over 20 years. And so I had some familiarity with the kind of information that you would need, ⁓ you know, sort of from a public health standpoint. And then when I did that for a while, and then I was like, well, wait a minute, I'm finding the same proportion across multiple states of the population. And if you extrapolate that nationally, boy, this is a lot bigger than what is reported by the CDC or reported by the UAB. And then when you dig into that information and you realize, wait a minute, ⁓ there, this isn't, they didn't get this data the way I did. They're kind of guessing at certain things and the CDC numbers are based on, ⁓ data that's incomplete. ⁓ so. Sasha Rabchevsky: Yeah. John McAleavey: Mm-hmm. M: That's always in the back of my mind been a problem. And leading up to our meeting in DC, ⁓ we very successfully, approached a researcher at Texas A ⁓ asking her to do a retrospective analysis on federal funding for spinal cord injury. Because this is another problem. There are tools, they're government tools at NIH and they're not very user friendly. They're difficult to navigate and they're difficult to pull out aggregate data. So we worked together. Sasha was on the team as well, um, as, uh, uh, Plex and science consultants. And we had a few other Plex folks as well. That just got published in the journal of neurotrauma last fall. We used a lot of that data in congressional meetings, along with data that we have been starting to mine. The problem is that what we are discovering, we've pulled a team together, a health economist, a public health expert who presented it at our meeting. Jen, who I talked about at Texas A and a couple of other folks, a gentleman who has a spinal cord injury, was a financial analyst for BlackRock. We put this team together. to dig into prevalence and incidence, which we think is probably a triple, if not more, maybe quadruple what we think it is for the number of people living with spinal cord injury in the United States. And the incidence might be somewhere in the neighborhood of 24 to 25,000 a year, not 18,000. And all of this has profound impact on the economic realities. What is the cost burden for the federal government? What is the burden on families? What is the burden on a community? And what is the opportunity in the marketplace for a company that's going to invest in delivering a therapy for spinal cord injury? If it's 2 billion or 3 billion market for spinal cord injury as it's reported today, but it's actually 20 billion. That makes a big difference in the level of investment that comes in. So we're very, very invested in putting this work together to get at the right data, ⁓ defensible data, citable data that we can leverage both. And somebody said it earlier. It also has an existential impact. Like we as a community then know who we are. Like right now we kind of don't know who we are. Like How many of us are there? What is the distribution of the injury? How many quads, how many thoracic, how many incomplete, how many complete? Now maybe those distributions that the UAB has are accurate, ⁓ but some of the other modeling is way outdated. And so what kind of existential implication will that have for our community to better understand itself and then better speak to with confidence what these things mean? John McAleavey: Mm-hmm. Mm-hmm. Barry: ⁓ I something I wanted mention was one of the things, Matt, that gets overlooked a lot is, and we're really starting to get our heads around it too, is non-traumatic spinal ⁓ cord injuries. Such a big Like, there's a lot of people out there, they end up the same way as we, and it's the same problem at the end, and they don't get captured in our numbers as well. Sasha Rabchevsky: yeah. John McAleavey: Yeah. M: Yeah, yeah, yeah. Right. Yeah. That's something this group we've been, we've been talking about quite a bit is that, much of the data out there is reported and understood is traumatic. and not, you know, the, the other indication transverse myelitis or, you know, spinal stroke or, know, any number of, ⁓ without sort of moving too far a field of spinal cord sort of pathology. ⁓ Sasha Rabchevsky: Yeah. Well, and also... Sorry, please. M: You know, which I think is sometimes been a complaint of like, if you try to lump too much together, like MS or other conditions, you know, that are part of the CNS, but you're absolutely right. And of course, you know, people who have transverse myelitis or other kinds of etiology are kind of frustrated. Like who's working on my stuff? Who's, who's trying to like, why can't I get into clinical trial? ⁓ because I'm non-traumatic. And that's really important and I'm glad you brought it up. John McAleavey: Yeah, I've seen in my capacity as the peer mentoring coordinator at Kessler up here in West Orange, New Jersey. I've seen a number of ⁓ folks with GBS. In fact, there's there's a young man that we have now. He's a wonderful guy. He's a a grade school teacher and a youth basketball coach and all of a sudden he's tripping in his house and he doesn't know what's going on. His feet can hardly lift his feet up. then next thing you know, I mean, he's almost completely paralyzed from head to toe. Well, luckily for him, they were able to catch it and put him on certain ⁓ drugs, whatever it is. And I saw him a week and a half ago and he was in a power chair and really couldn't do anything. I was back in the office again yesterday and he's already, he's already M: Hmm Barry: . John McAleavey: He's now in a manual chair that he can propel with his arms and his feet. mean, he's really making a monster comeback, which was heartening for me to see. So yeah, ⁓ there's a lot of folks out there that are affected by all of this stuff. And so to get your arms around all of that, you've got some really long arms, Matthew or Andric, I'm telling you. You've got a lot on your plate, my friend. ⁓ M: Outstanding. Yeah. Well, they're not just my arms. There's a lot of other arms linked together. ⁓ John McAleavey: Right. Exactly, yeah. As they say, we're all in this together, right? So, Barry, I'm sorry. Sasha, I know you wanted ⁓ to take us in another direction here as we head towards ⁓ rounding third and heading home. M: Yeah. Sasha Rabchevsky: Well, I don't know that there was another one except just to just again, I think that ⁓ So coming full circle for me, ⁓ is this I went the academic route I didn't never I never had a lot of outreach in my life. I never had a lot of John McAleavey: Yeah. Sasha Rabchevsky: advocacy, certainly. And I think I had a podcast with Matthew a while back and I was during the podcast, I kind of was like a little bit apologetic for why I haven't like done that. But I guess it's if I were to have any hindsight to the person who doesn't really care or you were asking about the person in Hobong County who wants to know, it must be it's just to get become aware, just learn, just listen, but make sure your sources are correct. This day and age of barrage of information, what I find, Barry and I joke about this, we have experts now and YouTube experts that have maybe five years of experience at a wheelchair and they have 20,000 fuckholes or whatever. And you have to wonder like, where are you going? Like, where are you leading them? And because there's no hindsight to be able to say they've had the wisdom to be able to chart the path. But at the same time, they had the vehicle and the voice to be able to do it now with just a phone. And that's where I'm starting to realize that a lot of, you know, my, profession is a lot of quiet. your steadfast, do your work. Don't be, and don't hype your data. You gotta be a scientist. And now what I'm hearing as I'm going along is it's all about tall, telling your story effectively. M: Nerdy. Sasha Rabchevsky: and getting the audience and getting the right people to tell the story in a manner that's not repetitive. Because if it's repetition, they'll just skip it. Today is like, dislike society, it's awful. And that's the distinction between what Barry and I and yourself, John, have gone through over these decades, okay, is that now... The younger crowd really is already much more educated, or at least they have the ability to be much more educated. But here's where your kind of question is, where do you put that, where do you channel all that? Because there's so many places you can go. And I would point to the big organizations like Reeve and Nielsen and ourselves in particular, because those are at least sounding boards for people, because we are very, very sparsely populated. John McAleavey: Yeah. M: One, I'm glad you, I mean, you said a couple of things that triggered a thought I was going to mention earlier, ⁓ that the way in which people acquire their information, you know, obviously is all over the place and, sometimes dangerous because, ⁓ my, one of my staff, Jason, who runs our advocacy programs, ⁓ ⁓ John, who, know, cause he was, ⁓ he also co-host the podcast with me. Jason came up with a really helpful phrase, I think, and especially as a peer mentor, you know, this, that there's a distinction in the definition of hope. And Jason describes it at there is, there is false hope. There is no hope and there's informed hope and. We see all of those in our community. We see people who have zero hope and are cynical as hell about, what are we wasting time and money? And, know, uh, and then we have other people who are like, I'm going to go to Panama and get shark stem cells and get cured of my spinal cord injury. Or they, you know, you, you know, there's a rotating list of like, Oh, this is it. John McAleavey: Yeah. Barry: you Yeah. Sasha Rabchevsky: Yeah. John McAleavey: Yeah, the silver bullet. M: This is it. This is the cure. Now we got to get this thing in and, ⁓ and there's, there's a lot of false hope out there. and then there's informed hope, which is someone who is checking, doing their due diligence, listening to people who've been in this space for a long time, like Sasha and Barry and, kind of doing their homework to make sure that their hope. The hope that they're speaking to is like, instead of that rotating of, this is it. We've cured it. It's, ⁓ this looks interesting and it's going to benefit some people. And boy, I hope that maybe we need to help get this through, but let's understand what it can't and can do. ⁓ and that's really, really important. I think in the way we all talk about this stuff, you know, I, I sometimes. John McAleavey: Yeah. Yeah. M: Actually, not too long ago, I got called out on LinkedIn, ⁓ by, ⁓ somewhat militant cure advocate who said, how come you never use the word cure? ⁓ and I said, well, I do use the word cure, but I am very careful with it because it can be a dangerous word. If you're not talking to the right person or you don't have an a sense of what this person understands or doesn't understand, you know, that's how we get the, sure. Five years. John McAleavey: Mm. Yeah. M: Right. How many times have people heard that story? ⁓ yeah. Don't worry about it. 30 years ago, five years, you're going to be up and out of this chair. Well, there's a setup for it for disillusionment right there. Right. John McAleavey: Of course. Barry: Yeah. John McAleavey: Yeah, yeah. Exactly. Well, along those lines, Matthew, if you could, and not long winded, ⁓ could you kind of tell us where we are? mean, is anything that's on your horizon that gives wind at your sails that the community can look to for some of that informed hope? M: Careful. Sure. mean, I, you know, from, and I'll try to, I'll try to be brief, ⁓ you know, from the meta on down the metal level, think, you know, decades of discovery are showing and an emergence of therapies that are, that are becoming available for spinal cord injury, neural modulation, probably everybody's aware of, you know, transcutaneous stimulation just got approved for John McAleavey: Yeah. M: ⁓ you know, limited portion of the population for upper extremity function. And now right behind it, ⁓ other, other companies with other devices similarly applied, ⁓ epidural stimulation, from onward being, ⁓ starting clinical trial to see where that can go and in whom, ⁓ you know, other things like exonist and their approach to nerve pain and nerve gen, the NVG 291. ⁓ you know, being thus far trialed and incomplete injuries, there are things that are emerging that show promise and then coming down a step from that. ⁓ or maybe it's the opposite going further. You know, what we look at is this belief and recognition that I don't see anything in the immediate horizon. That is the cure. Barry: you M: or the thing, but what I do see are opportunities to combine these things and amplify their effect. But those things need to be studied, you know, with some rigor and they need to be studied, not just with the, you know, like my lay person common sense. Well, why don't we pair NVG two nine one with epidural stimulation and see how, you know, like that's a, that's a Barry: Mm-hmm. M: We've already proposed that and are pursuing that and have funded a study to do that. but we have to find out if it works. We can't just assume, ⁓ you know, if you can break down the scar and then you add some stimulation, that's going to be it. Well, we don't know. We have to see how it works and if it is complimentary. So I do see, I think what excites me is that there are things emerging and as those things emerge, we are changing. John McAleavey: Right. Mm-hmm. Mm-hmm. Barry: you M: the very landscape for what spinal cord injury treatment can mean. And that provides more opportunity to combine these things. ⁓ John McAleavey: Yeah, well I'm excited. I'm going to get an opportunity in the next probably two weeks or so to to do the ⁓ use the Onward Arc EX device. This is a crazy story. I did do a 50 minute trial about a year ago and as a central chord syndrome quad my arms, hands and fingers ⁓ they gave up probably about 25 or 26 years ago. So I really have limited use, especially to the last couple fingers on each hand and Barry: you M: Yeah. Yeah. Barry: Okay. John McAleavey: I was a skeptic, you know, listen, I've been in this game for 34 years now, so I wasn't expecting to to go home and play the ⁓ piano. But I tell you, my pinky and my ring fingers on both hands felt a little something and it remained there for a couple of weeks after and that was only a 50 minute trial. So, yeah, I'm looking forward to to getting in and using it ⁓ twice a week, hopefully for about a month or so. And so I'll report back to. ⁓ M: Haha Barry: I just wanted to say M: Outstanding. John McAleavey: everybody with how that goes but I figured let me open it up to Barry and Sasha do you have any final thoughts for for Matthew or for the for the discussion we've had so far? Barry: I wanted to ask Matthew before we sign off how people can get involved because I come from the school of, was, it was a campaign locally years ago, but I love the expression was if you're not part of the solution, then you're part of the problem. I running an organization that revolved around SCI research for a cure. I used to get the phone calls. Where's my cure? Like, I'm looking at, I'm on the phone staring into the phone, like with my dagger eyes at a phone saying, well, what are you doing about it? I mean, like, give me a break. that does, you know, honestly, you get that and it's, I just can't implore enough to the people that we need to all get involved. We're all shareholders in this, this, this thing. And I just wanted to ask Matt, how, do you suggest people do get involved? M: Yeah. Yeah. Yeah. Sure. I mean, I think, ⁓ you know, being agnostic, whatever your interests are and the organization that fits you most appropriately, ⁓ sign up, you know, if it's United Spinal or Reeve or us or NASCIC or more than one, ⁓ you know, because not one of them fits all of you, then, then sign up for all of them, ⁓ for us. It would be if you want to get involved in some of this more activist work, explicitly focused on curing paralysis and not sort of the other care side of the equation, then sign up for our newsletter would be point number one. Go to utfp.org, sign up for the newsletter that will get you all the communications that come from us. Related to that, if you need background on what's going on, listen to our podcast. We just dropped all the video recordings of our symposium on our YouTube channel. Go to that and get a sense of what the, some of the things that we've just been talking about. beyond that, we have a number of initiatives, you know, we have, ⁓ funding mechanisms in Ohio, in Pennsylvania, in Minnesota. We are, as I mentioned earlier, working to get one passed in Wisconsin. And then we have our, ⁓ growing and building federal effort. ⁓ You can plug into those things. If you want to go even deeper, we have something called the lab rats program, ⁓ where we have people with spinal cord injury that we pair up with a research lab or project and they act as consultants. And so we have right now, we have probably about 25 or 28 lab rats consulting in labs across the United States. And actually coming up, have a couple of opportunities with companies that are looking for consultation on clinical trials they're developing or consultation on product lines they're thinking about for spinal cord injury. So all of these you can find on our website if you kind of poke around. But the very first one I would say is to sign up for our newsletter. But then as I mentioned earlier, you know, all these things John McAleavey: Mm-hmm. Very cool. M: depending upon who you are, like John, you're a peer mentor. If, if you're a person out there listening and you haven't done that where you live and there's an opportunity to do that, we need more peer mentors. We need more people to come alongside somebody when there's, when they're injured and have no idea what to do and where to go. Um, so there's, there's almost an unending list of opportunities to engage. Just pick the one that feels right for you and go. John McAleavey: Yeah. Barry: Thank John McAleavey: Sure. Sure. Absolutely. How about you Sasha, any parting thoughts? Sasha Rabchevsky: Well, in a way, ⁓ going back to when I was injured back in, was it 1885, I really didn't get a sense of a community. And I look back on it now, and I so wish I had. ⁓ It made that I kind of went the academic route to almost in a work in a sense of denial of my injury was to get back and Go do science and figure out what the hell's going on and make sure everybody does it right. Well, I'm there now John McAleavey: Yeah. Sasha Rabchevsky: Now I would have wished it along the way. I had thought about a lot of these things and made them more work. But I guess ultimately we're all in the same bus. Some of us are still at different pace than one another because we're all temporarily fixated on this timeline, at least we all seem to be, which is when was your son injured? When were you injured? Which is another weird thing in our society. You wouldn't go up to a complete stranger and say, please tell me the worst thing that ever happened in your life. It's just very, very different the way we perceive things. John McAleavey: Yeah. Sasha Rabchevsky: Where I would what I'm going with this is that use the opportunities you have look at your Smartphones I'm being intimidated by AI guys, but you know what I speak as I'm behind This new generation is gonna be ahead of us pretty soon And you know what Matthew speaking of that all this AI and data gosh, we got to tap into this, right? We got to tap into this new generation of because it want to do this kind of stuff like a bell, right? I mean, it's amazing to have people like that John McAleavey: It's true. It's true. And so. M: Yeah. As long as we stay balanced. So we, as long as we stay balanced, so we keep our brains and, ⁓ don't, don't give over everything to. Sasha Rabchevsky: Right. Barry: Yeah. Sasha Rabchevsky: Right. John McAleavey: You're right. That's right. Well, Matthew, I want to thank you and all the groups that you've mentioned numerous times for all that you're doing on our behalf. I'm reminded of that great scene from A Few Good Men where Jack Nicholson says, you want me on that wall. You need me on that wall. And we really do. mean, for the folks like me sitting in my office here, I I call this my home studio. It's the corner of a desk in my bedroom for all. Barry: Yeah. Sasha Rabchevsky: I'm not gonna lie. haha M: Sir, sir. John McAleavey: This is a fake background in the hundred episodes that I've recorded of my podcast trying to do my little bit here and the peer mentoring. You guys are really on the front lines and we really can't thank you enough for all that you do. And you were saying it keeps you up at night. So you're strumming on your guitar to get some of your jollies out of there because you need to. But again, thank you so much for all you're doing. ⁓ Sasha Rabchevsky: I'm M: ⁓ damn it! Sasha Rabchevsky: Okay. John McAleavey: on behalf of the community. It's amazing. And for joining us today. Keep up the good work and please give our best to Gabriel. He's fighting the good fight also. And if you want, what is his website? Do you have that off the top of your head? I hate to put you on the spot. Sasha Rabchevsky: Thank you, Thank you very much. ⁓ M: Thanks you guys. I will. That it is. ⁓ think he still does have a website. It's his full name, Gabrielrodrick.com I think. ⁓ or you can find him on Spotify and all the music streaming under freak F R E A Q U E. Yeah. John McAleavey: Okay, terrific. Awesome. Awesome. Again, thank you so much again for joining us and keep up the good work. M: Thanks guys. Appreciate it.