Episode 6: Cerebral Palsy Health. Theresa Sukal Moulton, PT, DPT, PhD and David Black: Frame Running an Adaptive Recreational Sport for Individuals with Cerebral Palsy

Episode 6: Cerebral Palsy Health. Theresa Sukal Moulton, PT, DPT, PhD and David Black: Frame Running an Adaptive Recreational Sport for Individuals with Cerebral Palsy

Frame Running is becoming increasingly popular as a recreational and competitive sport for individuals with cerebral palsy across all GMFCS levels. Tune in to learn more!

About this Episode
Photo of Jennifer Lyman and her son with the copy Cerebral Palsy Health by Jennifer Lyman across to the top of the image

In Episode 6, Jen talks with Physical Therapist and research Theresa Sukal Moulton and Frame Runner manufacturer/vendor David Black of RAD Innovations about the recreational and adaptive sport of Frame Running. A relatively new recreational sport in the US, a Frame Runner is an adaptive running frame that looks similar to a bike without pedals which allows individuals with CP to run or walk with minimal to no assistance. It has become popular internationally and is included as a sport in the World Para Athletics. David, Theresa and Jen discuss the history of Frame Running, who can participate, how it works, research to support it and how to get involved. 

Transcript:

Jen Lyman:                   Hey, everyone. This is Jen. Before we start the show, I just want to let you know that the World Para Athletic Organization and its governing board have officially changed the name from race running to frame running very recently, and the Cerebral Palsy International Sport and Recreation Association has adopted this name change as well. We'll be using these two terms somewhat interchangeably throughout the show. I just wanted to let my listeners know, and I hope you all enjoy the show. Thanks.

                                    Welcome to Cerebral Palsy Health. I'm your [00:00:30] host Jen Lyman. And on today's episode, I'm going to be talking with Dr. Theresa Moulton and David Black on a topic that's near and dear to my heart, especially since COVID: race running. It's an adaptive recreational and competitive sport that's fun and is great for folks with cerebral palsy. We'll be talking about how it works, who can participate, current research, and how to get involved. I hope you enjoy this episode.

                                    Welcome to the Cerebral [00:01:00] Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as STEM cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility, issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction, tackle tough to understand topics, and try to shed light on how best to maximize and optimize health, participation, and quality of life for those with cerebral palsy.

                                    [00:01:30] Dr. Theresa Moulton is a pediatric physical therapist and an assistant professor at Northwestern University's Feinberg School of Medicine. She educates doctor of physical therapy students, and our research interests are in the underlying neural mechanisms of movement challenges in cerebral palsy and activity-based interventions. Also trained as an engineer, Theresa is most comfortable [00:02:00] tinkering, graphing data, and finding creative and practical approaches to rehabilitation science. She is currently collaborating with community partners on a pilot clinical trial of a team-based race running program where athletes train together and participate in a community run event.

                                    And we have David Black on today. He is with Rad Innovations and has been designing and producing adaptive inclusive equipment for the last 25 years. After developing a series of jogging strollers for all-terrain and adaptive [00:02:30] use in the 1990s, David started producing other bicycle-related products, including trikes, tandems, hand cycles, and push chairs with positional seating systems. In 2013, Rad Innovations was asked by Parasport in Denmark to look at the possibility of producing running frames. David already had extensive experience with other three wheeled mobility and cycling frames, so he naturally became involved in a project like this.

                                    After spending extensive time with individuals of limited mobility or balance challenges, including [00:03:00] many with cerebral palsy, David was instrumental in developing a new design of frames that are lightweight, easily adjustable, and much more affordable. David now travels worldwide to help promote frame running and outdoor recreational and mobility for individuals of all ages and abilities. He's a regular attendee of the annual Frame Running World Cup and other events around the country.

                                    Welcome David and Theresa. I'm thrilled to have you both on the show, Theresa, you are [00:03:30] the instrument behind all of this. You introduced me to frame running, race running. And in 2019, I saw you give a presentation in Bethesda, we were at a conference, and you were doing a presentation on your research. And it was very preliminary, I believe, but I saw it and I was like, "Oh my gosh, this is something that my son can participate in." And I tracked you down almost a year later... or several months later saying, "Please tell me more about it." [00:04:00] And you were the one that ultimately introduced me to David, and now my son is an avid race runner. And thank you. Thank you so much.

Theresa:                       Of course. I mean, that's the reason for the work. I love that story, and I'm so grateful to have had that opportunity.

Jen Lyman:                   Absolutely. It's been a life-changing thing for Bauer. And we'll get more into that as we move on, but I'm just tremendously grateful for you, for introducing me to this, and also for being on the show now [00:04:30] so that we can introduce more people to it. So, why don't we... I want to hop in, and Theresa, since you are, I'm going to do ladies first. I want people to get to know you, and why did you decide to become a researcher specifically for people with cerebral palsy? What was your inspiration? And just tell us a little bit about that.

Theresa:                       Yeah. Thanks so much, Jen. It's a long and winding path, I think. I started my higher education journey as an engineer, [00:05:00] and I always knew I wanted to work with people, but in the final year of my undergrad, I had the opportunity to go into a clinic to start to collect some data on a device that we had made. In our really naive status as like senior undergrad engineers, we had made this rehab device that was terrible, but we got to learn why it was terrible by actually going into the clinic and doing some work with physical therapists. And I was like, "This is amazing. This is really cool to be with the end users, to be getting that feedback." [00:05:30] And it took me to graduate school to work in a physical therapy department with Jewel [inaudible 00:05:35] as my mentor.

                                    And then I met Deb Gabler, and you guys know her and the spirit that she brings to the field. And then I was hooked on cerebral palsy. And I love the brain, I love movement, I love engineering and problem solving, and that led me to actually go to physical therapy school myself. And having mentors in our department like Kristen Rochelle [00:06:00] really helped me to see the connection to the community and to the actual families, and it really just inspired my whole journey to keep learning more.

                                    And then I was in a conference in Stockholm in 2016, and I saw Connie Hanson present with some other researchers and members of her team and just had a light bulb moment listening to their stories about frame running and the idea of kids getting out of breath for the first time. And I was like, "Huh, in my PT sessions, I don't really do a [00:06:30] lot of getting out of breath," and just the importance of some of those elements. And I was like, "This is so cool," and it just really ignited a flame for me in thinking about it. And it's not that it was instantaneous. These things take so much time and planning, but I just really got interested in it and thinking about it as a lifestyle option and fitness as a way to really engage with children and young adults and adults with cerebral palsy.

Jen Lyman:                   That's super [00:07:00] cool, and I'll say this, you are the second person on my podcast who has mentioned Deb Gabler as a mentor. She's pretty cool. I think the world of her. I remember years and years ago reading her research and just hoping someday that I'd get to meet her, and now I consider her a friend and she's a neat lady. And someday she'll be on this podcast. We got to come up with a really... something special for her to talk about before [00:07:30] she retires.

Theresa:                       Fully.

Jen Lyman:                   Yeah. Exactly. Exactly. So, how about you, David? What was your inspiration, why did you decide to start working with people with disabilities, with mobility challenges? What's the fire in your belly for this?

David Black:                  Thank you for that question. It actually, my experience started as a teenager in high school when I was working for a horse ranch, [00:08:00] and they had a hippotherapy program where we would go and travel to special needs schools. And so it evolved, the knowledge of that or the interaction with that, and watching kids get on board and bond and gain balance... So, that was the very, very beginning. Many years later, as Theresa [00:08:30] described, she came from an engineering background, I was in the telecom industry and doing product development, problem solving, and did more in the form of consulting, engineering, and problem solving for other companies. I took on a project for a company that was facing a recall, and it was involved in push chairs and the push chairs [00:09:00] that fit everybody. So, they were running strollers and they had various adaptations and the possibilities of it.

                                    And in the process of working with them, I developed a series of products that would take existing seating systems and enable them to be put into all-terrain basis and go to the beach and go off bike paths and non- [00:09:30] traditional stroller application. The need was so great, the frustration of the parents for the cost of what product would be, or what product was available, just lit me up in a lot of ways, and I started looking at other possibilities of mobility and adaptation so that it could suit a broader spectrum [00:10:00] of people for a more affordable cost. And that was in the late '90s.

                                    Since then and to today and on an ongoing basis, we look at what can we do to make things better, and we do development and design and manufacturing and customization for people of all abilities, from [00:10:30] juvenile to geriatric. And so, here we are, and I think, as you guys both know, when you work with people or you see somebody that comes into you and you watch the transition from not being able to do something to being able to do something that they never thought they could is just a huge reward. [00:11:00] And we see this all the time, and it's like every day is a good day. It may take longer to get to the end of the day, but every day is a good one when you're working in this field. So, that's why I'm here.

Jen Lyman:                   Well, as a parent, I'm tremendously grateful for what you're doing. The cost of so much of the equipment that we buy or that I'm looking for my son... And we're a very active [00:11:30] family, and we do have off-road vehicles of multiple sorts and they're not covered by insurance. It's hard, and there's so many families that I wish could be able to participate more with the equipment that is out there. And it's really hard to obtain. So, creating affordable recreational equipment that allows people to participate is near and dear to my heart, and I'm grateful for [00:12:00] you to take up that and continue with it.

                                    David, I'm going to direct this question to you. I've heard you tell the history of race running before. Could you give our listeners a little bit of the history and then maybe also talk about the difference between race running and now the new terminology frame running?

David Black:                  Sure. I'm going to paraphrase some of the story because I have [00:12:30] spent some years in traveling to Denmark and participating in their world cup, which is hosted by Mansoor at the Parasport of Denmark and the race running organization. It started with two people, Mansoor Siddiq and Connie Hanson. Connie Hanson was a spinal cord injury [00:13:00] wheelchair racer. She was injured as a child and went on to be a very competitive wheelchair racer. And [inaudible 00:13:10] at a Paralympic sport event and saw Mansoor, who is high functioning CP, but competing in walker racing, essentially, wearing his shoes [00:13:30] out, two or three pair in an event or a weekend. And the two of them talked to said, "There must be a better way."

                                    So, what happened is that they collaborated and experimented with different frames that would enable Mansoor to push himself along in a better posture or a different posture than what a conventional walker might offer. [00:14:00] And that's more than 25 years ago. And so, there were certain iterations, and they were building in Scandinavia, and it's a passion to both of them. Connie has been a producer of variations of race runners since the beginning to today. Mansoor is the IT director for Parasports of Denmark, [00:14:30] and this is his absolute passion and life, to enable race running to become a world recognized event. They are focused on CP, and CPISRA then segues into that.

Jen Lyman:                   What is CPISRA?

David Black:                  Cerebral Palsy International... [00:15:00] Help me out. I'm blanking.

Theresa:                       CPISRA, Cerebral Palsy International Sport and Recreation Association [crosstalk 00:15:08].

David Black:                  Thank you. I just blanked on it

Theresa:                       That's okay. And they are based in England. is that correct?

David Black:                  They are. So, they cover a broader spectrum, including race running, of sports, and are also a parallel entity that [00:15:30] promotes globally. I guess that's the beginning of the race running and as it's evolved into actually being accepted into Paralympic and Olympic sport level competition, much of which has happened in just the last few years. Before, it was a community-based... and then it was the Danes versus the Swedes, [00:16:00] then the Norwegians got into it. So, it was really quietly up there, and now the Dutch are up there, and the Scots came over. And so, it's kind of Viking territory, if I think of it. So, anyway, that's how it all evolved, and we now have clubs in Australia. I started one in Taiwan. [00:16:30] We have a club out of Ottawa, so CP Canada. We've gone from two or three places within the US to maybe 12, 13 today. And this growing rapidly, some of it having to do with product being available.

Jen Lyman:                   So, David, we're going to go, for [00:17:00] this podcast, I'll make sure that I put all of the clubs on the resources on the website so the families who are listening will be available, it'll be available for them as well. [crosstalk 00:17:15].

David Black:                  Yeah, I'll send you a current list, but as I say, it's increasing weekly, so that will help with that.

Jen Lyman:                   So, Theresa, I wanted to... David's been talking a little bit more about the sport of it. I [00:17:30] consider it a recreational activity, as well, and it's not just about competition. But a lot of families I know are curious, who can benefit from race running? And we didn't get into the name difference, but we might interchange the word frame running versus race running. I think David was explaining to us earlier that we're trying to move towards using the terminology frame running because it makes a little bit more [00:18:00] sense. It's more like saying wheelchair racing, this is frame running. But even still, it's recreational for our family. Can you talk about who it's good for as far as individuals with cerebral palsy?

Theresa:                       Yeah, for sure. And I'll just acknowledge that in terms of development of my own expertise in the area, I am still in the infancy stages, so we're still experimenting and figuring things out sometimes. But what I've seen so [00:18:30] far in the club that we have, and in what I've observed from others and in the research, is that it seems to be really good for individuals who have challenges with balance, especially as they move more quickly. And then, so if we think about that in cerebral palsy terms, and in the framework of the gross motor function classification system, or GMFCS, I think those that find themselves in level two, three, and four are probably [00:19:00] likely great candidates for this.

                                    So, level two is somebody who maybe wears orthotics has a little bit of trouble on stairs, and finds it difficult to run on their own without any support. Somebody with level three may use a walker or something like that as they're getting around, so balance is clearly an issue if they're using an additional assistive device to help with that. And then somebody that's in level four probably uses a wheelchair predominantly for their mobility, but has some [00:19:30] capability of independent leg movement and with support and with the right kind of assistance, can independently propel themselves and decide where do they want to go and how do they want to get there. So, that's where I've seen it work.

Jen Lyman:                   Absolutely. That's been the coolest thing for us, is that to have a product that is... or to have not just a product, just a thing that can help somebody that's a GMFCS four get out of their wheelchair and move independently [00:20:00] with very little effort. When I heard you talk about that last year, it was remarkable to me because my son had tried multiple gait trainers, and he was okay with them, but they were very difficult. So, I wanted you to talk a little bit about the difference between a race runner versus a gait trainer for families who do have children that are level fours, because I know that [00:20:30] we always struggled with finding a good gait trainer, and this has made a giant difference for us.

Theresa:                       Yeah. I'm delighted to hear that, first of all. That's like the biggest thing. And yeah, it's tough, and I feel like it's like different shoes. You have different things for different purposes. And gait trainers, where they may have advantages as their footprint is usually kind of smaller, but then they have smaller wheels and they're quite heavy, and so that makes them difficult to initiate movement. [00:21:00] And I think the thing that struck me from the moment, I first sat on a race runner, it rides like a bike. It's very smooth, and it doesn't take a whole lot of effort to go forward. There are a couple of gait trainers that are better designed for younger kids that have similar easier movement features.

                                    But different things about them, there's a lot of adjustment options, but they're still not the best candidates necessarily for those GMSCS level four people with CP. [00:21:30] And so. I think that's the thing about the race runners that I've always really appreciated is that they're very easy to move forward because they have these big wheels and they're designed for quick movement. And so, they are easy to propel forward even if you don't have the best motor control, and even if you don't have the best balance, it's still accessible.

Jen Lyman:                   So, tell me how it can accommodate things like scissoring or spasticity or poor trunk control because I know that people are probably envisioning, " [00:22:00] Okay, I don't get it. I don't understand how this thing could possibly work and I could get actually moved fast." And I'll also say this. Another thing that's really cool is that it is for adults, too. This is something that adolescents, I find that people stop using their gait trainers at a certain point, but this is somebody they can move into and keep going with. I see, David, you have something to say.

David Black:                  If I could add [00:22:30] to that [inaudible 00:22:31]. There is a, between a gait trainer and a walker and a walking or running racing frame, the idea that you can cover a broader spectrum of terrain because of the bigger wheels. And it is less clinical or adaptive looking. It looks more like a bike. [00:23:00] And so, when children are involved in particular, the idea that they're running with their friends or able to be more mobile with their friends is a real important element to this, as well. And we see that regularly. With the elders, we also, "I don't want to be in a walker. I don't to be seen in a walker," and to have a frame that [00:23:30] doesn't look like a walker, effectively, it is but at a higher level. So, I think that's a real important add to that point.

Jen Lyman:                   Absolutely.

Theresa:                       Yeah.

Jen Lyman:                   So, yeah, as far as accommodating some of the extra needs that people may have, how can this do that?

Theresa:                       Yeah, and I think it might be useful, because this is an auditory podcast, what does this thing even look like? And I know that you're going to probably post some pictures under resources, but if I'm describing it to somebody [00:24:00] for the first time... And David, you probably have other really great explanations, but I say it's a big tricycle without pedals and you Fred Flintstone it. And so, the idea that we have a frame that you're inside of, and then we can have a lot of options with seats. So, that's one thing that we've noticed for our athletes, that swapping out seats can sometimes make a big difference just in where you feel pressure and how that makes your body respond for something like spasticity, [00:24:30] you mentioned, Jen. They have a variety of trunk supports available, so if you do have poor trunk control, having a chest plate that maybe wraps around a little bit or has a strap in it to give that additional bit of support has been helpful.

                                    Just our anecdotal experience, and I think David can probably add to this, we've had a lot of good luck with adding on little bits of pool noodle if we need to if there's contacting me, so scissoring is a [00:25:00] really good example of that. Sometimes the post of the seat might tub in a way that's uncomfortable, so we put a little pool noodle on and it works out really well.

                                    Another thing that I'll just mention here, I think, is that another aha moment that I had in working with these devices was I was working with one of my PT students who happened to be a competitive cyclist. And I spent so much PT training, and even what I was telling my students is like this upright position is so important. Stand up tall. These are the things that we [00:25:30] often work on, and she was telling me about how far flexed forward as a cyclist she was. And she was like, "Well, that helps your muscles. They're in a better position to fire". And I was like, "You are so right." And so, the idea that leaning forward into a supportive chest plate can actually make all the difference in the world for somebody that's looking to advance this device forward and keep up with their friends and do the things that are really important.

                                    So, we're still very much in an experimentation phase [00:26:00] about figuring out what works for each person. I would say for our athletes so far, I think a small percentage have been spot on the first time. They all require fiddling of the seat, making it a little higher or lower, changing the chest [bait 00:26:15] position. It takes a little bit of time and experimentation, but we've had a lot of success for somebody who even does scissor or have a lot of spasticity.

Jen Lyman:                   So, yeah, with my son, the ability to lean forward is key. When [00:26:30] he stands up tall, when he stands up straight, he gets nervous that he's going to fall, so having that forward lean and having the ability to hold on to the bike handles that are directly in front of him, it gives him that control. You can definitely tell the difference between standing directly upright versus that forward lean. It's comforting for him. And he has all the issues you talked about. He's got spasticity, he's got scissoring. And we did all that fiddling, we had to cut [00:27:00] the post down on the seat, and then we added a little noodle down there, and it fixed the problem super easy. David, I saw that you wanted to interject.

David Black:                  Well, yeah, I think that one of the things that we did from, although it's a different... It's a case by case fit, and what we added to the new generation that we're working with is [00:27:30] a broader range of fitting and adjustability, whether it's chest plate size or function or being able to get the seat closer to the chest plate, whether it's a more upright position or a more prone position, and to accommodate different abilities of grip and reach. [00:28:00] And that's really made a difference. There are several schools of thought on whether an individual needs to be more upright or more prone. Is it an ambulation application, or is it a competition? And spasticity certainly can have an effect on where that is.

                                    When we start with a fitting or send a running frame to a family or to an individual, [00:28:30] we try to start them off with the principles of what we want to fit, and it would be toes down, heels up, and I can define that better, but so that the weight is up off of the ground and an individual can get a stride and learn to develop that gait or stride. And then we can start to fine tune it easily to more engagement to the ground, greater propulsion. And [00:29:00] so, comfort is critical, the fitting is critical, and within a particular frame, you have a variety of adjustments that one can easily make. So, that's really important to the success of an individual to the frame and to the forward motion.

Jen Lyman:                   I fully agree. And I'll say this, that it is one of the few things that even with all of the issues that Bauer has with spasticity, with scissoring, [00:29:30] with balance, it's one of the few things that he's actually gotten into on the first time and been able to go and move on his own. And that's a win and he's a year into it now, and he goes to the park and goes around... We've got a park near our house where he goes around the track at the park. So, he started out just going down the street, first day, went down the street. This was with the post hitting [00:30:00] his leg, it wasn't working quite right, we hadn't quite adjusted it properly, and he still could do it. And now he's going a quarter mile. He's going in a full lap around the track, which is super cool. And he's been on the track team at his school, so he practices with the track team. And he's got his coach, Mr. Eric, who takes him out pretty much almost every day. They go at least a few times a week.

                                    But what I wanted to highlight, just the participation [00:30:30] and how much for him it's really improved so many things with being able to do things with his friends. And they all cheer him on when he's out there, especially when he's out with the track team. Obviously with the family, we can all go out there. These are the F words that I like to talk about all the time, so talking about friends and family, fun, fitness, function, and future. And [00:31:00] for Bauer, race running has encompassed all of that because, like I said, he can do things with his friends and his race runner. The family, we can get out there and cheer them on and do things together. It's super fun, so he loves it.

                                    Of course, I want to get into this when we talk about research, but from a fitness perspective, this is phenomenal for him, and it's improved his function. He's stronger and he can sit up better. Little things that he couldn't do, he can do now. And then, of course, future for him, [00:31:30] it's recreational, but maybe it could become something that is competitive for Bauer. So, I just wanted to highlight that before we move on because I do want to talk about the research behind it and also the settings in the US where people can get involved. But it's important to me to highlight the participation.

Theresa:                       Yeah. Can I just say, Jen, I love that, and I love that we all need something that's motivating. Right? And I think that the comment [00:32:00] that you made about having some success the first day, you can build off that. Right? When you're finding yourself in any new activity and you're just like, "Gosh, that was defeating. That didn't go very well," it's hard to get back on that horse and try again. But if you have something that you can build on, you can go a little bit further the next day. And it's just boosted with the encouragement of friends and family, as you mentioned. I think that's so wonderful and really fantastic to hear. And I hope [00:32:30] that that can be the experience that a lot of other people have, as well.

Jen Lyman:                   I hope so, too. So, can you talk a little bit about the research that's out there right now to highlight that for families and how this actually can physically benefit people?

Theresa:                       Absolutely. So, I will say that in general, the research is still emerging, and so the data that we have that motivates a lot of the research is that people with cerebral palsy [00:33:00] don't move enough, they are not physically active enough. This comes in two prongs. The first is that sedentary behavior is very high, so there's a lot of time spent during the day, more than 90% of the day, engaging in sitting-like behaviors. And that's problematic for health. And so, looking for opportunities for moderate to vigorous physical activity is something that we should all be looking for and that we know is something that people with cerebral [00:33:30] palsy especially need opportunities for.

                                    So, looking at those kinds of things, there are a couple of studies that are clinical trials, meaning that participants sign up to do a particular prescribed amount of time over a particular duration. And so, what's been found in those studies is that race running for 12 weeks, two times a week, has been shown to increase muscle size and increase cardio respiratory endurance, which [00:34:00] are both things that we know are challenges for people with cerebral palsy, and so seeing steps in the right direction is a good thing. These studies are not the gold standard of clinical trials. There's not a control group to say, "Well, what if you didn't race around and you did something else?" So, we can't necessarily say at this point that frame running is decidedly better than a different kind of exercise program, but what we can say is that it makes improvements in baseline of function.

                                    And there's a couple of protocols that are published, so there are [00:34:30] more people getting interested in doing studies. And just a minor personal plug, I'm included in that. My colleague Tara Egan and I from the Chicago Public Schools, we paired up to do some pilot grants with a local organization called Chicago Run, who their bread and butter is they bring youth programming to schools. And so, embedding in that, we are also wondering like, "Is this something that can be feasible? And what kinds of physical changes [00:35:00] do we see and what kind of emotional changes do we see by participating in these kinds of programs?"

                                    So, I think that there's going to be a lot more to come in the coming years. I know that there's a couple of programs that are underway, as David mentioned, there's more clubs all the time. So, I am a huge proponent of like if this is happening, let's collect the data and let's understand more about what is happening, because it's a very exciting opportunity, but let's see like is this just in our heads, or is there some differences that we can [00:35:30] definitely see? Because I think there are, but I'm a scientist, so let's prove it. Right?

Jen Lyman:                   Right, right. I've got a pilot study right for you. So, if you need [crosstalk 00:35:38].

Theresa:                       Jen's [inaudible 00:35:39] the case study. That'd be amazing.

Jen Lyman:                   Exactly. Case study. Thank you. Thanks for correcting. So, let's talk about the cost of a race runner. Are there ways to demo a race runner for those that are interested in trying it?

David Black:                  Well, [00:36:00] I'll go to that, if I may. The cost of a race runner today is in the mid teens, so somewhere between 1,500 and $2,000, depending on the level of chest support and the size of the frame. But that's approximately half of where we were two years ago. And [00:36:30] as far as demonstrating a race runner, we have, as I say, a growing number of locations and clubs, and I also find the synergy of an individual like yourself, Theresa, if somebody was in [inaudible 00:36:48] that that wanted to try a race runner, everybody is glad to share. And I have yet to see any different to that.

                                    [00:37:00] What we also are looking at is working with organizations that are adding race running, or frame running, into their existing programs, and either as a lending library or the ability to borrow or try. We have a group right now, in fact, I have a team out in our community and they have race runners and other types of trikes, and they do a weekly ride where people [00:37:30] can come and try. We're working with, and there are numbers around the country, but Vermont has a nonprofit locomotion, and it's a walk and ride kind of interface where it provides product to different schools around the state. And we're seeing a trend towards that adaptive, inclusive world, and frame running can be very much a part of that. So, that would be [00:38:00] the answer to that.

Jen Lyman:                   I recall it last week, you may have told me about this [inaudible 00:38:04], I could have misunderstood you, but you mentioned that the Challenged Athletes Foundation might have some grants available, as well, for people that are interested in race running?

David Black:                  Yeah. Challenged Athletes has funded a number of restaurant owners. They've got some within their San Diego hometown, as well. And when it comes to competition or activity- [00:38:30] related usage, they've been very kind. They also have helped with several organizations as clubs that have multiple sizes, which is really important that you've got the right size to the individual. There is a group down in Florida, the I Can Run, I think Mary Grooms is a pediatric pediatrician down there, she helped start that. And her daughter is a world- [00:39:00] class race running athlete. And there are others, as well. We got Theresa up in Chicago that is opened up to the public school system, and we've got Ottawa that is the CP group. There are different groups where one can try, and I'm not naming all of them, but you'll put that list up.

Jen Lyman:                   I'll definitely put the list up. I know that we have the Great Lakes Adaptive Sports Association, as well as the Sport [00:39:30] Therapeutic and Adaptive Recreation Association. I think that's in Wisconsin. And I think we mentioned all the European groups, they've been doing it a lot longer than we have in the US, but it's nice to hear so many popping up right now. And I'll have those resources on the website, as well as the research that Theresa is referring to so that people can read it for themselves. And of course, I'll update it as more research comes out.

                                    [00:40:00] It's about time to start closing up shop around here, and I wanted to finish by asking each of you, Theresa I'll ask you first, what do you think is going to have the biggest impact for people with cerebral palsy in the future? And it's a big, broad question. You don't have to talk just about race running, but for families listening, you are a researcher, you've got a lot of [irons 00:40:26] in different spots.

Theresa:                       Yeah. [00:40:30] Yeah, I think it's such a hard question and you could go a lot of different ways with it. And as I was reflecting on this a little bit, I was thinking that some of the things that I think are going to have the biggest impact are not any person with cerebral palsy or their family, but our overall society just being a little bit more inclusive and thoughtful about how we design spaces and how we design opportunities and teams and how we allow kids to be active in many different ways and just giving [00:41:00] space and opportunity for anybody to participate in whatever way they can. And that includes things like having, the topic of our conversation, having frames available so that kids can run and be part of afterschool teams in the same way that somebody that doesn't need balance assistance can. So, I think if we're thinking about big impact, I think that's going to be a big impact.

                                    I mentioned earlier, I love the brain and I love that kind of stuff, so [00:41:30] I think the more that we can learn about the brain and what that means for movement, and also just the whole brain development, I think some of these opportunities to be accepted and be integrated in a way, I guess, or just be part of the whole society from birth, those active learning opportunities, I think, are going to change the whole brain moving forward. And so. That's what I think will have the biggest impact, is actually the whole environment of where we live. The more that changes and becomes more inclusive, [00:42:00] I think that will ultimately affect the brains of all of us, but especially those who have injuries from very early on.

Jen Lyman:                   That's a beautiful, beautiful sentiment. I really think that's very powerful, and I fully agree. I think that the world will be a much better place when we get to that point. David, how about you? What do you think's going to have the biggest impact?

David Black:                  Yeah. You're right, it's a big question. I [00:42:30] think, in the race running conversation, that inclusivity is the magic word and that the broader spectrum of users, CP and beyond, is going to really help the recognition and acceptability of using something like this and enabling people, whatever the condition and limitations of mobility might be, [00:43:00] is critical to the CP world. I also think that in the last several years that the realization that early intervention and the sooner we can enable a child to try to move forward or get onto a frame, the faster or the better the progress we see. [00:43:30] And so, developing smaller frames that are enabling that at the earliest stage and letting them migrate upwards, whether they go on to competition or it's a mobility assist, I think that's going to be the future.

Jen Lyman:                   Well, let's do it. Let's make it happen. I'll keep on pushing that, David. I want to thank both [00:44:00] of you. This has been a phenomenal conversation. Like I said, it's near and dear to my heart. I think race running has been, or frame running, has been great for my son, and I'm honored to have both of you in my life because of it and to have been told about it by you, Theresa. Thank you both for being on the show today. And I want to thank my producer, Greg Tilton. He does an excellent job making us sound a little bit smarter and a whole lot better. [00:44:30] And I hope the listeners found this to be a conversation that counts with experts who care. Have a great day.

                                    Thanks for listening to the Cerebral Palsy Health Podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcasts and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JBLyman@mac, that's M-A-C, .com. This [00:45:00] podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and/or any other medical concerns with their personal medical team.

 

"When you work with people or you see somebody that comes into you and you watch the transition from not being able to do something to being able to do something that they never thought they could is just a huge reward."

David Black