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Episode 3: Rachel Byrne
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Rachel Byrne is an internationally recognized nonprofit executive, therapist and published researcher. She has been instrumental in changing the future of cerebral palsy research and implementation science leading to improved outcomes across the lifespan. Rachel has a background in physical therapy, with a particular interest in neuroplasticity and motor learning leading to her early career as a clinician delivering physical therapy services in schools, hospitals and private practice. She has been the executive director of the Cerebral Palsy Foundation for over 5 years.
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Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Alexa Orban on Instagram @lexi_orban
Credits
Host: Alexa Orban
Producers: Katy Gaastra, Kyle Khachadurian
Executive Producer: Ashley Harris Whaley, Rachel Byrne
Graphics: Briana Raucci
Recommended
Transcript
Introduction to 'Cerebral Palsy Grows Up'
00:00:10
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we explore the unique experiences and stories of adults living with cerebral palsy. We hope this podcast fosters a sense of camaraderie and community among listeners. I'm your host, Alexa Orban.
Creating Meaningful Connections
00:00:26
Speaker
Today, we're joined by someone who makes creating spaces for meaningful connection a major priority.
00:00:33
Speaker
Rachel Byrne is the executive director of the Cerebral Palsy Foundation. We'll also be diving into Cerebral Palsy Grows Up, so join us in this conversation where we unpack the work of the Cerebral Palsy Foundation and explore how Cerebral Palsy Grows Up is making a difference.
Rachel Byrne's Career Journey
00:00:50
Speaker
Hi, Rachel. Welcome to the Cerebral Palsy Grows Up podcast. ah Excited to have you here today. And I'd love to kick off the conversation with a brief self introduction. Thank you so much. I'm so excited to be here. And, you know, I also want to say a big thank you to you for obviously hosting this podcast.
00:01:08
Speaker
Yeah, it's been an amazing experience and I'm just looking forward to sharing all of the stories and the different perspectives and the great episodes that we have in this season. So it's something to look forward to and definitely great to have this initiative started. So really excited to be here.
00:01:24
Speaker
And so for those of you who don't know me, my name is Rachel Byrne. I'm the executive director at Cerebral Palsy Foundation. I have a background as a physical therapist, but I've been in the not-for-profit space and particularly in sort of like an executive leadership role now ah for the last five years, but in not-profit space probably for the last 10. I have a little bit of a unique background as to how I sort of came into this role, into this space. I started off as a clinician and have worked in hospital settings, actually in the education setting, so in schools as well and throughout private practice. And then on a personal note, my husband and I and moved to
00:02:07
Speaker
New York, ah he got a job in New York, and I was presenting at a conference in San Diego, met the previous CEO of the foundation, and sort of the rest is history a little bit as to how I'm i'm now here. But probably what is a little unique is that I'm still very much in the research environment, but I've actually never done a PhD. Within the research space, sometimes that is a little unusual, but I think it also brings different perspectives and I suppose a different reason as
Impact of CPF's Community Work
00:02:36
Speaker
to why I'm here. really The piece is as to how do we elevate cerebral palsy and how do we think about it as this sort of deep systems change approach and all those other things that will actually lead to change in all those other environments that I've worked in. And you've been the executive director of the Cerebral Palsy Foundation for just over five years. What drew you to the world of CP-focused nonprofit work?
00:02:58
Speaker
As I said, I sort of started my career early on as a physical therapist. I was really fortunate to have extraordinary mentors when I first got out of college and some of those were in the disability space. So one of them in particular named Sari Kessler, she's a physiotherapist as well. And I worked with her within schools and we really sort of looked at, well, how do you actually look at changing community-based outcomes or how do you look at changing outcomes for individuals with cerebral palsy and other disabilities at that time, it was really multifaceted, right? It it wasn't just, okay, go in and you know prescribe a motor program. It was really thinking about, well, what does that look like within the school system? And then going on from that, well, what actually are the things that students want to learn and what do they want to participate in
00:03:49
Speaker
And then also you have the real healthcare care issues. So you start to bring in obviously the hospital settings and then you think about, oh my gosh, I'm trying to collaborate with all these different people to drive what the goals are for the individual with a disability. And, you know, it just starts to go, there are so many people involved.
00:04:09
Speaker
And one piece that it really allows us to bring that together is somewhere like the foundation. Because at the foundation, we actually work in all facets of everything. So we work very closely, obviously with individuals with cerebral palsy, they are the ones who are driving what we do at the foundation. um They lead our foundation, ah but also their families, but then making sure we are working with researchers and clinicians and industry partners to make the change that needs to happen.
Culture and Creativity at CPF
00:04:36
Speaker
Yeah, and I think that that's something that's so interesting about the ecosystem of CPF is there's so many facets that come into what the foundation does. So over your five years that you've been the executive director, what are you most proud of? And what do you think is the most transformative accomplishment that you've had for CPF?
00:04:54
Speaker
Probably what I'm most proud of actually is our culture. This work isn't necessarily easy. You know, there's not a lot of people that are in it, but I think one of the most important things that we can do is actually enjoy the work that we do and make sure with that we have fun at the same time. and At the foundation, we've really grown that culture that allows people to excel, you know, to create new ideas, to put forward even for example, this work to say, all right, we need to prioritize adults with cerebral palsy. What are we doing about it? And like, let's just get it done. There's just part of this energy at the foundation that this work just needs to get done.
00:05:35
Speaker
Sometimes we're not sure how it's going to get done, but we're just going to do it. And and the people that work at the foundation are just extraordinary. And I think that would be what I would say is my proudest piece is actually the culture and and what it feels like to work where we work.
00:05:51
Speaker
Yeah, it keeps that momentum going too with all the different areas that you're focusing on. So I know you talked a little bit about the foundation and some of the different areas, but if you had to kind of give that broad scope overview and talk about the focus areas of CPF's programs.
CPF's Mission and Goals
00:06:06
Speaker
Yeah, absolutely. So I think first and foremost, our mission is broad. So our mission is to be a catalyst for driving positive change for the 17 million people living with horrible quality around the world, right? And so the question might be, well, how do we do that?
00:06:20
Speaker
And so we really do it across four key focus areas, and that is healthcare. And we'll obviously dive into a fair bit of the healthcare pieces and and how we're trying to drive healthcare change. But it is absolutely still within education, looking at disability inclusion, but also thinking about what education looks like in primary and secondary, thinking around advocacy and policy change.
00:06:43
Speaker
And then, excitingly, for a lot of people in design and technology, you know, that sort of scene is like the next frontier of what we're doing. And I suppose it's not just what we do at the Foundation, it's really how we do it. And I think this is actually a legacy piece for us.
00:06:58
Speaker
you and The foundation is being built on 70 years of work. There's been phenomenal people that have been engaged with our work, have led our work over the years, but it was really founded on that innate drive for change. So not just thinking about, okay, can we we put you know a band-aid on a solution or can we look at solving one piece of the puzzle? It really was built on really this whole ecosystem of change, and and that's how we do our work.
00:07:27
Speaker
So if you're thinking about healthcare, we drive research within healthcare, but we also think about the clinical implementation of that research and how do we make sure that it's actually embedded in the system. We then think about the longevity of that, so does it have the policy are pieces that need to occur and then of course do the people that need it actually have that information so thinking about that knowledge translation and dissemination and I think within that framework and that ecosystem is why we actually get the outcomes that we get And it's also why we can be as agile and as at the forefront of the things that need to happen as we are.
Healthcare Focus for Adults
00:08:05
Speaker
Definitely. and And one of the things that you were talking about as far as that ecosystem was actually gaining access to the people that need it the most. And so, you know, really transitions into cerebral palsy grows up because this is, you know, the newest project that tackles the issue of health care for adults with CP. And it's no small task at all.
00:08:24
Speaker
So what made you want to take a leap on such an extensive and expansive project? I have this sort of little saying that sometimes goes, if not us, then who? And I think we take on quite a responsibility at the Foundation to lead this work because I wish I could say that everyone else was doing it and that we could just collaborate together and that the results are there and we just haven't delivered it to the people that need it. The reality is not many people are doing anything in this space.
00:08:55
Speaker
And as a foundation with our mission that says, you know, we will do things across the lifespan and for everybody that has cerebral palsy, of which 60% of those are adults, I don't think we can fulfill our mission without doing a work like this. And, you know, as you said, it's not easy, but we've formed the most incredible team to achieve it. And as I said, if it's not us, then who? And it's too important not to do.
00:09:21
Speaker
Coming from that personal perspective myself, i mean it's something that impacted me. and so I love that you know you are the people that are going out there to say, this is what we need to do and this is where there's this major gap, especially just in the system overall. so i'd I love that you overused everything for us, but I'd also like to dive in too um and discuss you know some of the the different avenues of which um you're extending to to focus on with this project.
Addressing Healthcare Gaps
00:09:50
Speaker
The best bit about this project is it actually fits the model of how we work at the foundation. So as I said, how we do things is just as important as what we do. And so when we looked at this as sort of this big problem that we're trying to solve, right, we've already got what we call our networks of change, which is putting together global partners from around the world who are in researchers. So they're scientists, they're clinicians, they're obviously individuals with cerebral palsy, they're family members. And importantly, they're like industry leaders as well to come together to solve what are these And so if you think about that up to 90% of adults with cerebral palsy receive no or little care, that's a big problem. You know, cerebral palsy is not a rare condition. This is something that impacts millions of people globally. So, you know, by definition of what we do, big problems. So if I think about then the next steps on how to make the change happen,
00:10:44
Speaker
You go to those areas. So if we went to research first, then we sort of looked at what was happening in the research literature. And unfortunately, it's minimal, right? There is more that's happened in the last five years than what's happened in the first hundred before it. But really, adult research in cerebral palsy is probably only 5% of what's currently happening. And so we found all the people globally who are doing it, right?
00:11:07
Speaker
I can count them on one hand. However, they are the most dedicated group of individuals and it's really getting led by Mark Peterson out of the University of Michigan who has really been at the forefront of some of this work. But going, all right, what research do we know? What do we know from other areas? And more importantly, then what are the gaps so that we can start filling those gaps?
00:11:29
Speaker
And then on that, it's like, well, from a clinical perspective, if we look at all the different aspects of how cerebral palsy impacts an adult. And that's why, you know, when we're thinking about preventative health care guidelines, it's in everybody's system. It's in, you know, it's all encompassing. It's not just your muscles and your bones. It's everything. How is that going to be delivered? And where is it going to be delivered?
00:11:53
Speaker
And most importantly, we asked adults with cerebral palsy where and how they wanted that delivered and what were their priority areas. And the majority of the time it is going, how can that be delivered by my primary health care provider? How can that be delivered at times within a specialist center? And so if you're thinking about those true models of care, how do we then get that information into those systems? And how do we get that information into the providers that are going to deliver it?
00:12:22
Speaker
But most importantly, how do we get the information into the ends of the adults with cerebral palsy, who are the ones actually who need it the most? So these are the sorts of things as we're building out this program and building out all the different elements of it that we're constantly thinking about. But as I said, it it works well because that's what we already do. That's what I see as being the strongest elements of what we do at the foundation is that we actually think about these as these sort of all encompassing projects.
00:12:49
Speaker
Yeah, and i I love that it leans into your expertise on healthcare systems change too, because what you're your saying through this project is happening is basically a paradigm shift to how the treatment is happening right now. Can you expand a little bit on what healthcare systems change is?
00:13:08
Speaker
Yeah, so you know that's a long, i how long do we have kind of thing to answer that question. But I think healthcare systems change is is really looking at all aspects of the healthcare system. it's It's looking at obviously who are all the stakeholders within the system, who are all the players within the system? What is the physical infrastructure? Really importantly, what is the digital infrastructure? Because obviously we have really you know advanced that just globally in the last five years.
00:13:35
Speaker
and then also what is the knowledge that we have. So if you look at all those different pieces, the only way that you're going to get to a sustainable ah solution is actually looking at all those pieces in all parts of the puzzle. I think the good news is is when we're thinking about healthcare systems change, we don't have to reinvent the wheel. There's you know extraordinary examples actually of how you can get these things to work and create models of care that are very effective. And I think they're the pieces that we'll be leaning on and saying, all right, to create those models of care, what are all the elements that we need to know? So of course, yes, we need to have content, which is still lacking in our area, but we need the content, right? Like you can't go, all right, what are you going to do in relation to cardiovascular health if you don't know anything about cardiovascular?
00:14:22
Speaker
But then beyond that, it's like, well, who delivers that? Who are the people that can actually help with that side of the health care paradigm? And with cerebral palsy, you've got to think it's not just going to be ever one answer and it's not ever going to be one person. So this sort of multi-disciplinary team approach.
00:14:38
Speaker
Thinking about then well what about care coordination what about insurance it really is thinking about every single aspect within the healthcare system change and and doing it in a methodical way. That allows for the steps to occur you measure the steps you know some of it gets quite boring i could talk about this stuff ever like i get obsessed with it that i really enjoyed however.
00:14:57
Speaker
You can do these things following a method to make sure that you're also testing it as you go, right? yeah You don't want to implement something and go, yes, I'm brilliant. I know everything. And then at the end of it, after three years or four years or five years go, Oh, oops, that didn't work. So.
00:15:14
Speaker
By embedding agile practices, thinking about implementation science, all those things, it does it allows us to think about healthcare systems change, but it also includes, as I said, multiple people and and multiple systems and players and infrastructure.
00:15:28
Speaker
And I think that in this too, in this whole system that's being set up, there's also such a diverse spectrum of cerebral palsy and how it affects each individual. So is this something that goes into the process as you're building out programs at CPF and specifically cerebral palsy grows up?
Community Input and Representation
00:15:45
Speaker
That goes back to our drive and our basis of everything that we do that we're actually listening to our community. And so when we're listening to our community, we've got to make sure we're hearing a diverse group of individuals, a good diverse group of families that are from many different places and for many different aspects of their life and different types of cerebral palsy and different severities and all of that. And I think we put a lot of effort and a lot of time into making sure that we do that.
00:16:15
Speaker
both at the beginning of projects, throughout projects, and that's why they do become successful, is because at the end of the day, we're asking the community what they want and we're delivering what they want, right? And rather than saying, okay, we've created this great product and getting feedback at the end, which you know is not really the way to sort of think about anything is to say, all right, what are the highest priorities? What do people want? How do they want it delivered? And so let's build it upon that instead. How will we apply a system change lens across Cerebral Palsy grows up and who's involved in the different components that are making this happen?
Leadership and Community Success
00:16:52
Speaker
This is a sort of exciting part of the conversation to talk about because there are absolutely extraordinary people involved in this project. And I suppose, you know, it's similar to what I've touched on before, it was driven by our community survey, which more than a thousand people filled in both parents of children with cerebral palsy and adults with cerebral palsy and adults with CP themselves. And the number one thing that both of them said was that they wanted to know what cerebral palsy looks like as they age.
00:17:18
Speaker
And that's everyone doesn't matter what your age is. It's one of the most important things. And so that was sort of at the first layer to say, all right, this is a high priority for our community. We have to do something about it. The second layer is that as we've built the foundation and really prioritize culture at the foundation over the last five years, it's been really important to us to make sure our programs and our work is led by individuals with CP. Isla Ekoff, who is our board chair, is absolutely extraordinary in really driving these pieces. you know And we've got lots of board members who have really impacted ah by CP, whether they have it themselves or whether you know actually an adult child of theirs has it, right? So that piece was sort of like a ah driving change to begin with saying, all right, we need to prioritize this,
00:18:06
Speaker
but We have the internal momentum to do it and then we've built staff around it. So this project is led by Ashley Harris-Waley and you know we've been working on this for the last three years because it's been really important to get it right.
00:18:22
Speaker
But also, there is a lot of components. you know As I've described, to get this to change, there are many facets to this work. So when you see these announcements that have just come out, just know that there has been three years of different work that's been going on behind the scenes to make this occur. And with that, Ashley has put together an extraordinary team who is part of CP Crows Up. And we have an absolutely amazing advisory board that is really helping to drive all the elements of it. And and I think that's really important. As we say, this is a program built by Adults with Cerebral Palsy for Adults with Cerebral Palsy. And yeah, that was a ah huge priority for us as we started this.
00:19:05
Speaker
Yeah, and i I definitely coming into the project, I felt that foundation of nothing about us without us, right? Like, I felt that at the core that this was about people with cerebral palsy and and growing up into that system. And it's something that I've experienced too, and I'm i'm not alone. We'll see this echoed throughout many conversations that this is are just a reoccurring theme. and so you know That goal and getting towards those projected outcomes are just so important, but I think knowing where the project had started to where it's going is just so amazing to hear. and I'd love to learn more about some of the projected outcomes of the project and things to look forward to.
00:19:50
Speaker
Yeah, absolutely. So the preventative healthcare care guidelines themselves, right? So that is going to be across every body system. So think about it from your head to your toes and everything in between. And it is really to try to establish what is a framework around surveillance. And, you know, we all get our annual health checks. Well, we're meant to get annual health checks, right? PSA to those that don't, like let's all, you know, work together and actually look after our health.
00:20:19
Speaker
But it's really thinking about some of these things that we have just thought are inevitable, actually are preventable. And so it's like, why are we waiting for things to happen and then reacting to it when we could actually be preventing it? This is where the whole concept of this work is sort of based on. It's to say, all right, before something bad happens, let's look at the elements to either identify it and think how it's treatable, or even before that pathway happens, as I said, prevent it all together.
00:20:48
Speaker
And it's across all systems, because again, when we asked, adults with cerebral palsy, parents of adults with cerebral palsy said, this isn't just about bones and muscles. This is about everything else. You know, tell me about my cardiovascular heart health. Tell me about what's going on with mental health, right? Mental health is a huge issue.
00:21:07
Speaker
pain, we know pain about 75% of individuals with cerebral palsy live in chronic pain. What's causing that pain? So so many different things. You know, is it a gastrointestinal issue? Is it something to do with a kidney? There's just many different things. So that's what this is sort of established on to think about what does good health look like? And, you know, one thing that we do know is that you can have a disability and you can be healthy, you can have a disability and you can be unhealthy. And health is at the forefront of what we want to sort of be aiming for, particularly in this project, right? Obviously there's very huge different aspects when we're thinking about life with cerebral palsy and for adults with CP. But this particular project is laser focused on the health components.
00:21:55
Speaker
It's such a great point that you do bring up to when we're talking about all of the different facets of the research is to connect them to living a healthy life with a disability versus an unhealthy life.
Finding Resources and Engagement
00:22:07
Speaker
So for people who are looking you know for this research and the guidelines and everything that will be coming out through Cerebral Palsy Grows Up, where can they find some of these resources and what will be available to them and their providers?
00:22:19
Speaker
So Cerebral Palsy Grows Up is going to have its own ecosystem. So, you know, bear with us a little bit as we've sort of started this project and we're starting to sort of put information out there. Obviously Follow Cerebral Palsy Grows Up on Instagram. It is where you're going to sort of get the most up-to-date relevant information when a publication comes out. You know, we will tell you what's in that. we'll We'll try to distill it if it's got a lot of medical knowledge so that there's useful tips and things like that that you can use in your everyday life. Currently,
00:22:47
Speaker
we've got cpresource dot.org and there is a whole adult section on there that actually has a framework looking at like a checklist on different things that you could already be looking at before these elements are published and we're going to do campaigns around it and I suppose what we're asking for is the community to join us in this. You know we really see this as a community driven initiative and it can't be successful and won't be successful without you.
00:23:12
Speaker
And I think the other element that will come from this is actually the opportunity to advance our knowledge, right? As I said, our baseline knowledge right now has so many gaps, right? But we have to start somewhere and we need to put out, well, what is the best evidence right now?
00:23:27
Speaker
But what we're hoping to also establish is beyond that, right? So what is the research that needs to occur? You know, what are the things that need to happen and how can the community really be involved in that? And a big piece of it as well is exactly conversations like this because that's just such a big gap. and just finding more on people's stories, their backgrounds, and pieces of their life. It really is something that from a perspective of even if I can't get the care I need or even if there's something that's not available for me right now, it's those connections of those lived experiences. so I'm so glad that we're able to have this be a huge piece of the initiative too, because I think it'll really just allow us to keep springboarding all the research that's coming out in the community that's but being built around Cerebral Palsy Crows Up.
00:24:15
Speaker
Yeah, absolutely. And I suppose my request, and I'll put a request out there, is to actually hold us accountable, right? The foundation, we're not always going to get this right. And because there's a lot of unknown in this space. As I said, we don't know the research as well as we should. It doesn't exist. You know, we've never really done this from a clinical implementation perspective, even from a communications as well. These are topics that can be really hard to discuss.
00:24:40
Speaker
You know, some of this information feels really negative. Some of it feels really dark. And so, you know, we want to hear from you. We want to know what conversations you want to have. We want to know when we don't get it right. You know, let's work on this together and really have an open dialogue.
00:24:56
Speaker
and I think that's the bit that I would love to sort of request to the community. Sometimes be a bit patient with us if we do do it wrong, but call us out if we do too. you know we're not We're not here to be patted on the back and say, great job. right We know this is a complex issue. We know there's a lot of different elements that we need to work towards, and sometimes we're not going to have the answer.
00:25:18
Speaker
And so ask the questions. And if it's not the right answer coming back or it's not enough information, tell us. And we'll really try to work it out. And something that I'd like to echo on that too, Rachel, is from my perspective, I've gained a lot of my health care knowledge about my CP through social media, which is just you know i I had never known so much about my CP until I started to share my story on social media. And I'm not telling everybody to go share their story, but I think what's interesting is there is such a lack of resource that this is where the community has gone to connect and so to be able to say that like it isn't going to be perfect right away but it really will be that collaborative effort of people coming together again
00:26:03
Speaker
to talk about this. And as far as if there is some of the research that's coming out, I personally would like to know.
Empowering Healthcare Consumers
00:26:11
Speaker
And I know that sentiment isn't just within myself because going to a provider and having the unknown is so much harder than just having an answer.
00:26:19
Speaker
Sometimes those answers are easier than others. But I think that's, again, a shared sentiment that I've seen with so many people that I've talked to. And it's because we are literally messaging each other on Instagram to just talk about these pieces of our disability. And it's not always something that, you know, you'd think of when you were transitioning out of pediatrics into adult care. um And I'm thankful for it. But again, this is something that really will change lives.
00:26:46
Speaker
And so going in from that focus of this is what we're doing but it's also bringing everybody together and that's really why I feel I'm here and part of this project too is because it's through these conversations, it's through the voices, it's through the work that the foundation is doing that it'll really piece together and become the initiative that I'm sure you're envisioning to.
00:27:07
Speaker
Well, knowledge is power, right? Like if we think about that and we think about, you know, a lot of the time you think about power imbalances within healthcare, right? Like we'll go to a physician or you go to a doctor and you don't know what's wrong with you or you don't know, say, if you're sick or why you're unwell. And so you're looking to them for the answers. And I think sometimes they don't have the answers either. However,
00:27:28
Speaker
it still creates a power imbalance because you're sort of going there, well, I'm the one that needs the help, can you help me? And if you don't have the right questions to ask, if you don't sort of know what you're wanting or you're looking for, it can make it really difficult. So I think that's what we're trying to do here is to empower everyone to actually be good consumers of healthcare.
00:27:48
Speaker
You know, at the end of the day, as a patient, you're a client, you're a consumer, like they're actually meant to be delivering you a service that's really meeting your needs. And if that's not happening, then how do you have those conversations and how can you feel?
00:28:01
Speaker
like you're actually part of the decisions that are getting made about you, right? And I think they're the pieces that we're really trying to build up is to actually give everybody the knowledge so you can go in there and have conversations and to be able to make decisions with your medical team or or make decisions that are best for you rather than kind of being told what decisions are best for you.
00:28:23
Speaker
or not taught anything, which is part of the business, right? Yeah. It's so true and and not having the resources on either end. And I think that's something that's very personal is we bring our personal perspectives through what we've lived with with Cerebral Palsy and we're not getting kind of a baseline of care or a guideline like what Cerebral Palsy grows up is able to give. So it's just going to be something that really changes how we go into these appointments, and it's something that will feel empowering, and I'm glad that they're able to be a resource that we'll have access to.
Vision for Adult CP Care
00:28:55
Speaker
But I'd also love to know what's next for CPF and Cerebral Palsy grows up because we're just getting started, especially with CPGU.
00:29:03
Speaker
I think, you know, it's exciting what's happened kind of in the field of cerebral palsy in the last five years, but then to think what the next five years is going to bring. Right. And I think even just in medical science in general, like if we're thinking about, you know, just the core of healthcare right now, because that's sort of where CPGU is focusing on originally, there is so many advancements that are happening. And my piece is, is how does the foundation make sure that we have enough influence that as advancements in medical breakthroughs are occurring,
00:29:32
Speaker
that cerebral palsy is part of that. I'm sure many of our listeners have heard about what's happening potentially in Parkinson's disease or you know other different pieces or Alzheimer's or dementia, and they're really important issues. There is no doubt about that, right? But when we think about the pipeline to research and to breakthroughs,
00:29:53
Speaker
how do we get cerebral palsy on that same pipeline? And how do we change the dialogue that cerebral palsy is something to be managed compared to something that can be changed? I think even with the definition of what CP is, right cerebral palsy is a non-progressive brain injury that occurs before, during, or shortly after birth and it leads to musculoskeletal and other comorbidities.
00:30:15
Speaker
But that first part, that it is a non-changing brain injury. So yes, it is not changing in the fact that it is degenerative as the initial core injury. However, it is changing and it can change both ways. CP can change in a negative perspective and CHP can also change in a very positive way and and move things forward. And I think that as a field is where we really need to start thinking that this isn't something that is not able to be changed. You know, a lot of the conversations that I have with people, they go, oh, you know, that's just not possible. I think we need to question that all the time as to what is possible. And when we think about that in other basic health care pieces,
00:30:58
Speaker
There are many different things that, as I said, could be preventable that we're just not even thinking is on our radar right now. So that's what I'd like to see. I'd like to really think about these things across this sort of pipeline of, all right, there's so many different mechanisms. There's so many different systems that are getting impacted by cerebral palsy and other things.
00:31:19
Speaker
How can we look at actually doing these breakthrough treatments or these things that will really change the trajectory of these different things? Because changing our trajectories are completely possible and and that is something that we have sort of been in this sort of stagnant approach with.
00:31:36
Speaker
You know, the Foundation has actually a really incredible legacy in looking at breakthroughs in science. You know, not many people know, we've been around for 70 years, founded by absolutely incredible individuals, Leonard and Isabelle Goldleston, who at the forefront were looking at creating change.
00:31:54
Speaker
like Isabelle Goldmanson went to NASA and was like, why are wheelchairs not made out of the same things that spaceships were made out at the time, right? Okay, great. Now they're made out of titanium. Now they're made out of light materials. You know, let's go to Harvard at the time and get the top medical doctors working on these different things.
00:32:13
Speaker
Rubella used to be a major cause of cerebral palsy. The foundation was instrumental into the Rubella vaccination, which all of us still have at some point during our life, most likely. And it has really led to Rubella being eradicated. German measles is eradicated.
00:32:29
Speaker
and So like I looked back at that and that occurred in the sixties, fetal heart monitor was something that the foundation did. Looking at phototherapy, like there's many different sort of monumental shifts. So we can still have those, it's sort of what I'm trying to get to, right? Like we haven't found all the breakthrough discoveries, like there is plenty more to have, but how do we keep cerebral palsy at the at the forefront of people's minds as they're doing them?
00:32:54
Speaker
Yeah. And that's something that when you look back, sometimes you don't realize how far we have come. And this is in the stance of CP with disability, disability rights. Like there have been so many monumental shifts and I definitely feel within the past decade, but there's still so far to go. But I think we also have to come back to sometimes say, wow, we've already done so many amazing things. And they've also helped shape those decisions of where things need to go next.
00:33:22
Speaker
So if you had to say where this work will will be in three to five years, like what would that
Call for Collective Effort
00:33:28
Speaker
vision be? My vision is that we will have a clinical framework that will allow adults for cerebral palsy to have a roadmap of what their future health care looks like. And we'll be able to take measures and interventions to look at preventative approaches on minimising the important things to them, which is pain,
00:33:49
Speaker
which is looking at mental health, which is looking at you know really having a healthy future. I think that's awesome. but that was It was perfect and just connecting all of that, like to hear that personally, it's something that I've been striving for since I was kicked out of my pediatric care. That's exactly why I don't even think people realize it's possible to have. sort of To start and to see where this will grow is something that you know is is definitely needed.
00:34:15
Speaker
And I'm sure you have a very long answer to this last question that we'll will be asking every single guest across episodes this season. But what's the number one thing you want to see changed about healthcare for adults with CP?
00:34:28
Speaker
The number one change that I would love to see, oh my gosh, so many different aspects, but I think what I want to see the most is actually the time, effort and resources put towards it. You know, I think we need to say enough is enough. We draw a line in the sand and as a field, as a community, go, this has to be our top priority. You know, we can't ignore it any longer.
00:34:50
Speaker
And yeah, so I suppose for me, it is more like this community collective effort. And that's not just saying adults with cerebral palsy coming on board. That is the whole community. That is researchers, scientists. It is really bringing in the clinicians, bringing in the hospital systems, you know, health care systems, all of them to say, yeah, actually, we're going to put this as our top priority and move it forward.
Conclusion and Future Outlook
00:35:11
Speaker
Well, Rachel, thank you so much for joining us today and kicking off what Cerebral Palsy Grows Up is really about. We're looking forward to just such a wonderful season with so many guests, diverse topics, and just really connecting with people who have lived experiences in their 30s all the way to in their 70s. So from from all of that, it's just so important and we're glad to hear your perspective and we're looking forward to seeing where Cerebral Palsy Grows Up starts and grows. Thank you so much.
00:35:38
Speaker
Thank you. for listening to this episode of cerebral palsy grows up the podcast the show is produced by ashley harris whalele katie gasre and kyle catchor and hosted by alexa orban and its logo is designed by bririananarachi we'd like to thank our listeners for being a valuable part of our community and to rachel byrne for her time and expertise Don't forget to subscribe and rate Cerebral Palsy Grows Up the podcast from wherever you get your podcasts. Please follow Cerebral Palsy Grows Up on Instagram and TikTok to keep up and connect with the project and stay up to date. Thanks again for listening and we hope you'll be back for our next episode.