Duchenne UK pushes tech to its limits to help those with the condition

Duchenne UK pushes tech to its limits to help those with the condition
This week we see the impact one charity is having on development of assistive technology for the degenerative condition Duchenne muscular dystrophy (DMD), which affects more than 300,000 people around the world. The technology is playing a vital role in keeping teenage dreams alive. 

A mother and son tell their story; he has DMD, she’s founded a charity to tackle some of the big challenges in drug development in their search for a cure for DMD. In 13 years, Duchenne UK has raised more than £27 million and used this money to fund pioneering medical research, create a DMD clinical research network of hospital sites across the country, set up a national programme establishing best practice across all the disciplines involved in DMD clinical care, and develop innovative assistive mobility technologies, such as the arm-assist Elevex, to support the independence of people with DMD.

Somewhere on Earth meets Eli Crossley - musician, pupil, teenager, whose rock band was the youngest ever to perform at Glastonbury, Eli’s mum, co-founder and Chief Executive of Duchenne UK, Emily Reuben OBE, and Hayley Philippault, Head of Technology at Duchenne UK.   

The programme is presented by Gareth Mitchell and the studio expert is Nick Kwek.   

More on this week's stories:  
Duchenne UK
Askew

Transcript

00:00:00 Gareth Mitchell 

Hello, I'm Gareth. This is Somewhere on Earth. It's a special edition. Wouldn't you just know? And I'm here in London. 

00:00:15 Gareth Mitchell 

Joining me today is technology journalist Nick Kwek. So he's a technology journalist and filmmaker and welcome to Somewhere on Earth, your debut on our little podcast. 

00:00:26 Nick Kwek 

Thank you so much for having me Gareth. 

00:00:27 Gareth Mitchell 

Lovely to have you. Now, people may be wondering why you are my expert in this edition. What do we need to know? 

00:00:34 Nick Kwek 

I ask myself that I don't know why. No. I'm here because for over the past 13, 14 years I've been globetrotting around the world, covering innovation in various sizes and various shapes and forms, and over the last few months, something caught my attention, which was a young artist by the name of Eli Crossley, and his amazing talent, but also how he is developing a exoskeleton. 

00:01:00 Nick Kwek 

A arm assist device to help him keep his dream of performing music alive for longer. And we took Eli to South by Southwest in America, one of the world's leading and biggest music festivals, to not only help him achieve his dream of breaking America, but also for him to be able to share his pioneering assistive technology to the masses. So that's why I'm here. And thank you so much again for having me. 

00:01:28 Gareth Mitchell 

Well, thanks for being here, Nick. And for setting up so nicely for us and we might just be meeting Eli. Spoiler Alert, dear podcast listener. Let's jump in. 

00:01:42 Gareth Mitchell 

And coming up today. 

00:01:46 Gareth Mitchell 

Yes, it is. It's a heady mix of technology, music and remarkable, interlinked human stories  this week. As we talk about a degenerative condition called Duchenne Muscular Dystrophy. We're hearing about efforts to build assistive technology to help those who have the condition like Eli who we’ll be meeting quite soon, because this is indeed 

00:02:06 Gareth Mitchell 

a mother, a son, telling their story. He has DMD. She has founded a charity to work on technology, to improve not just his life but the lives of others who have the condition. So there's a whole lot going on, wheelchair technology, big data, as Nick said, exoskeletons and I suspect possibly a bit of artificial intelligence as well. 

00:02:26 Gareth Mitchell 

And there's a healthy dose of rock'n'roll. What more could you want? It's all right here on the Somewhere on Earth podcast. Alright, so you've heard the name. Now meet the man. Yes, people. Eli Crossley is right here around the table with us. It is an honour and a privilege to meet you, Eli. You have performed at the Glastonbury Music Festival, haven't you? 

00:02:52 Eli Crossley 

Yeah, that is correct. First of all I would like to say thank you so much, Gareth, for having me on. This is actually my first time on a podcast. So yeah, it's it's it's a great privilege to be here. 

00:03:03 Gareth Mitchell 

Wow. No, we're the privileged ones. Believe you me, especially given you've done loads of telly, you've you've performed at Glastonbury and at South by Southwest. And now here you are giving your first ever podcast interview. It's a scoop. Brilliant, right? I'm. That's made my day already. And what else do we need to know about you? Because you're in year 12, as we call it in British schools. So how old does that make you? 

00:03:25 Eli Crossley 

So that makes me 16 and for the international listeners, in year 12 and year 13. So when you're 16, 17 and 18, you take your final school exams. So I'm currently in the middle of that. 

00:03:38 Eli Crossley 

I study geography, business and music. Music, obviously, for those of you who don't know, I am in a band. I'm a singer in a band called Askew, which is a bunch of my really, really close friends. Obviously, last year we got the opportunity to play at Glastonbury, which  

00:03:56 Eli Crossley 

was just the best moment of my life. It's something that my parents have talked about since I've been very young and I've always known about it and the fact I my first time going there, I wasn't just watching, but I was actually playing was amazing. And then obviously South by Southwest was incredible as well, like being flown out to America is a crazy experience at 16. 

00:04:20 Gareth Mitchell 

Yeah, 16 years old. And then to be at that festival. You met a lot of the great and the good of the whole music community. 

00:04:28 Eli Crossley 

Yeah. 

00:04:28 Gareth Mitchell 

Met some of your heroes, didn't he, Nick? 

00:04:30 Nick Kwek 

Met Bon Jovi. Jon Bon Jovi?  

00:04:32 Gareth Mitchell 

Yeah I saw. Yeah. Jon Bon Jovi. How is that? 

00:04:34 Eli Crossley 

He was lovely. He was. He gave me really good words of advice, which I really wasn't expecting because he's obviously such a legend in the music industry and my aim is to be like him with my band. We want to be like Bon Jovi. So the fact he gave time to talk to me was just amazing. 

00:04:55 Gareth Mitchell 

Yeah. And we're here to talk about assistive technology. So set this up for us Eli. We've already spoken about the condition that I'm just abbreviating to DMD. Perhaps tell me a little bit about the condition, how it affects you, and then why we're talking about assistive technology in this special edition of Somewhere on Earth. 

00:05:11 Eli Crossley 

So so Duchenne Muscular Dystrophy is a muscle wasting disease, which means you lack the gene dystrophin and that causes muscle wastage. It does have some really kind of sad impacts. Obviously I stopped walking when I was 14, 15, sorry. 

00:05:30 Eli Crossley 

And you slowly lose like function of certain body parts and it is really, really difficult. I'm a full time wheelchair user. That's one way it affects me. And it's just I think coming to terms with a condition that is really, really tough is obviously difficult. I've become accustomed and I'm used to it now. I've got an amazing life and obviously the the reason why my mum's charity is working on 

00:05:58 Eli Crossley 

assistive technologies because when you lose your ability to walk, you obviously have a wheelchair. So that's in place. But when you lose upper arm function, there's nothing really in place to help kids with that. That can be really difficult because like everyday tasks such as even brushing your teeth, lifting up a glass of water is really difficult. So that is the main reason behind trying to come up with this upper body exoskeleton. 

00:06:21 Gareth Mitchell 

Yeah. So picking up a glass, cleaning your teeth, and indeed picking up musical instruments, getting your guitar, holding a microphone, all this kind of stuff. So you mentioned your mum and the charity as well. So let's meet Mum. Emily Reuben, who's co-founder of Duchenne UK. So just in a few words, tell us about the charity then, Emily. 

00:06:41 Emily Reuben 

It's always hard to follow my son because he's so eloquent. But yeah, thanks for having us on the podcast. So we're, we're first and foremost a research charity. So in 13 years, we've raised and spent £27 million on accelerating research for Duchenne Muscular Dystrophy. And it was only in the last few years that we started to look at assistive technology. I think because we're a charity run by parents,  

00:07:01 Emily Reuben 

my co-founder Alex and I both have sons with Duchenne, we're really living this disease on the front line.  

00:07:07 Emily Reuben 

So when things come up that we find to be challenging, that we find, you know, to not help our boys and where we maybe can find a solution then we will do that. So for instance, you know we found out that they were turning away clinical trials in the UK because there weren't enough doctors and nurses. So we set up the DMD hub, we invested 4,000,000 pounds and there are now more trials than ever before. 

00:07:28 Emily Reuben 

And it's a, you know, we have to think globally about Duchenne because it's a rare disease. So we we work with partners all across the world and the technology side of things really grew out of a you know, desire for Eli to play the ukulele and and live his life and pursue his passions for as long as he can. And you know, that's why we're so motivated. 

00:07:54 Gareth Mitchell 

Absolutely. As any mother, any parent would want. You know you want the best for your child, don't you? And one way of achieving the best for them might be just ringing around trying to get the support, putting a team together and that might be as far as it can go. And for many parents, maybe that is as far as they can go but you’ve,  

00:08:10 Gareth Mitchell 

you've had the means. You've had the, the will and the drive to not leave it just at that, haven't you? You've gone to these extraordinary lengths setting up this charity, effectively setting up a whole research organisation to tackle this. 

00:08:25 Emily Reuben 

Yeah. I mean, if you told me 12 years ago that I we would have achieved everything we have done, I I wouldn't have believed you. But you know, I really, I suppose I have a really strong sense of of of justice and injustice. And I just felt as though because Duchenne's, a rare disease, it’s often overlooked and that just felt unjust to me. And in the technology space you know, I just have a real rage inside me about the injustice of it. You know, we we got the delivery of a new car last week and it was nice. We enjoyed having the car. It didn't have wires sticking out of it. It didn't have nuts and bolts sticking out of it. It didn't have nails sticking out of it, but when you look at Eli’s wheelchair, there are wires hanging off. There's a big nail that just stops short of his thigh. You know, it's. 

00:09:10 Gareth Mitchell 

So it's really crude technology. So that’s your point then. 

00:09:10 Emily Reuben 

Yeah, and it makes me angry.  

00:09:10 Gareth Mitchell 

Yeah. So the the big technology companies because obviously they have massive markets in the kind, like making cars or games consoles or what have you, they're all beautifully, slickly designed. And I guess what you're saying is not everybody and not many technology companies, not enough of them, maybe not any of them are already thinking about the kind of needs that we're up against here. 

00:09:32 Emily Reuben 

And if only they did, we could change the world. 

00:09:34 Gareth Mitchell 

It would make a real difference. So well look, we're going to find, obviously I want to find out all about the technologies that you've been developing and a bit more about what you do at Duchenne UK. And let's meet Hayley Philippault, who's also around the table here. You're head of technology, aren't you at Duchenne UK. 

00:09:47 Hayley Philippault 

Yes, I am. 

00:09:47 Gareth Mitchell 

And as head of technology, tell me a little bit about like the team that you have there then, have you got like a whole sort of research team. Or is it really you guys working together in a front room? What's the scale here? 

00:10:02 Hayley Philippault 

Wow. Yeah. One of the things about Duchenne UK is it’s incredibly effective, but amazingly lean as well. 

00:10:07 Hayley Philippault 

So, you know, we're not this big charity with massive overheads and you know lots of kind of fun spent on marketing and things like that. We we're really invested in what we do and you mentioned there amount of money that's been raised over that time since she and Alex set it up. But you know you can honestly say all of that money is going towards that research going towards you know, finding new treatments, finding solutions, best practicing care, setting up all these amazing initiatives which are helping families across the UK. 

00:10:35 Gareth Mitchell 

OK, so so you say you're lean, so how lean, how many of you are there? 

00:10:39 Hayley Philippault 

Well I worked out the other day cause we've had an influx of a few people. It’s about 14 full-time members of staff equivalent. 

00:10:46 

Oh, that's decent. 

00:10:46 Emily Reuben 

But but in the technology team, it's you and David. 

00:10:49 Hayley Philippault 

Yes. Just the two of us. 

00:10:48 Emily Reuben 

So you and David and then Eli gives input. I obviously input a lot, my co-founder Alex does and we're bringing in some people who have lived experience of Duchenne because we're we're trying to bring the development of of this product in house because that's where the expertise is. You know you need to engage. 

00:11:49 Gareth Mitchell 

Nick.  

00:11:06 Nick Kwek 

I think what's unique is that you're the head of technology at a charity. How many charities have a head of technology? 

00:11:09 Hayley Philippault 

I know, I know, you know. 

00:11:10 Nick Kwek 

So you're not just looking at research to cure DMD, but you're also developing brand new cutting edge innovations to play part and parcel of the mission that you're trying to achieve 

00:11:24 Gareth Mitchell 

Right. And now I want to hear about some of this innovation. Our listeners are dying. They're all sitting there saying, yep, good stuff. But what are you actually doing then? So tell me about the smart suit, let's start with that. 

00:11:32 Hayley Philippault 

Yes, the smart suit got itself a new name, so the young people worked with us to find a name for it and called it Elevex. So it's our new Elevex suit. And what it is basically is a wearable, so soft robotics wearable technology, which is going to help people to be able to lift their arms and be able to sort of use their arms for all of those things that Eli mentioned, you know, eating, drinking, leisure activities, you know, holding a mic, singing, playing drums or something. 

00:11:59 Gareth Mitchell 

Is this the exoskeleton idea? Is that a separate thing? Right. OK. 

00:12:02 Hayley Philippault 

Absolutely no. This is it. So so Exos can be hard worn, you know, hard on the outside and and sort of very mechanical looking or they can also be self robotics, yeah. 

00:12:10 Gareth Mitchell 

That's what I was thinking. Soft robotics. So, Eli, we're talking about something that presumably is more sympathetic to your body because you don't really. It's going to cramp your style a little bit if you're wearing something that's just like 4 pieces of metal with a load of actuators on it. This sounds much more suited to what you need. Just tell me, you haven't got it on at the moment, but tell me what it is. You know what it's like to wear it. 

00:12:34 Eli Crossley 

First of all, you're very right. I'm a rock star. Not, this can't cramp my style. You know, I've gotta gotta always look the part. But yeah, so. So it's in the early stages of of development. Yeah. Yeah. Hayley is doing an amazing job. She really kind of understands like what needs to be done. 

00:12:58 Gareth Mitchell 

I’m glad, I'm glad you're impressed with it, that would have been a very awkward interview if you said ah it’s rubbish. 

00:13:00 Hayley Philippault 

No no, we've had some honest conversations about it. 

00:13:01 Eli Crossley 

But but I I would like to say, sorry, I would like to also say that it is in the early stages of development. So for example comfort can be improved. I think the style of it at the moment, as I said still in early stages, so it's not where we want it to be, but we have seen good early progress and obviously, I I think one of the reasons why it's so difficult doing this is because no one's done it before and doing something no one's done before breaking the market for disabilities, you know. 

00:13:28 Gareth Mitchell 

Yeah, it's not. Yeah, it's not like you've got the blueprint.  

Yeah, just, just, just trying to give the listeners a sense of what it is and what it looks like. The the way I'd I'd understand it is it, it looks not like a corset it in a bad way necessarily. In fact it doesn't look, but but it is something that kind of for want of a better term, straps 

00:13:48 Hayley Philippault 

Yeah, it's small. 

00:13:50 Gareth Mitchell 

a little bit around the body and has support for your arms that have clearly some kind of actuator and something’ that’s giving you force and momentum to lift your arms so. 

00:13:56 Nick Kwek 

You want me to say what it's like? 

00:13:56 Gareth Mitchell 

Just, let's have a go at describing it.  Yeah. Go for it, Nick. 

00:13:58 Nick Kwek 

Well, I would say, you know what it's like. It's kind of like a rucksack or a backpack, but instead of there being a bag and container at the back of it. What there is is just the arm straps and then also a sleeve for Eli's elbow which then, when Eli's got the straps on and the sleeve, an electric motor is able to lift up his arm and also back down again using a string actuator. What do you call it Hayley? 

00:14:30 Hayley Philippault 

Twisted string actuators, the TSA for short. So this is an an actuator which was developed in the Stanford Research Institute over in the US. And they came up with this idea of using a really quite small motor actually. It's quite low power and and a string. So if you have a couple of pieces of string and you put them together and you held them at both ends and you started twisting at one end, what would happen eventually is that the the string gets shorter, right? So, and if you think about then applying that into  

00:15:00 Hayley Philippault 

something that's worn on the body. So you've got a motor that turns a string that is running through it, it's flexible. You can move and then the string gets shorter, and then you can actually, you know, generate lift, you know, amazingly effectively actually through using this sort of wearable  

00:15:16 Hayley Philippault 

actuation method without having to have these, you know big motors and you know hard exos and stuff like that. Um and we've always talked, we're talking a lot about the controls, weren’t you, you know, Eli's been amazing. He and other people have been testing it with some fantastic stuff. 

00:15:29 Gareth Mitchell 

Well, how do you control it then? Does it sense automatically what your body's trying to do?  

00:15:35 Hayley Philippault 

Well, not not at the moment. 

00:15:37 Gareth Mitchell 

OK, you've got some kind of control input and then it'll allow you to lift one of your arms. 

00:15:41 Hayley Philippault 

Yeah. So what did you think about the ring?  Wasn't really your thing, right? No. 

00:15:46 Gareth Mitchell 

The ring. Well, tell me about the ring. See. Like a wearable ring that was somehow the input device. 

00:15:51 Emily Reuben 

So it's like on Bluetooth and you just if you want to lift the arm, you switch the ring one way and you want to lower the arm, you switch the ring another way, which we actually thought was quite a quite a snazzy idea. But then when the, when Eli and and some some other kids with Duchenne used it I think they found it a little bit clunky and cumbersome.  

00:16:06 Hayley Philippault  

It's kind of confusing. 

00:16:06 Nick Kwek 

Wasn’t cool enough. It wasn’t cool enough. 

00:16:11 Gareth Mitchell 

Well was the style rather cramped then, Mr Crossley? 

00:16:14 Eli Crossley 

Yeah, it was so. So that's what the end aim is to get kind of like a everyday ring like a cool accessory and obviously now as it's one of the early prototypes it's basically a 3D printed kind of ring and it has like something which you turn but it but it can sometimes get like stuck and sometimes it's you know. So yeah that's it. 

00:16:34 Nick Kwek 

But what but what I think's important about this and why to me, this piques my interest as a technology journalist, is because this is design and action in that Eli is part and parcel of the design process. So very often you see assistive technologies designed without the intended demographic actually part of the design process. But Eli has been instrumental in the design of the Elevex arm assist, which is incredibly important because as Hayley, you can testify,  

00:17:06 Hayley Philippault 

Absolutely. 

00:17:07 Nick Kwek 

there's no point. How important is that? 

00:17:09 Hayley Philippault 

Massively so, massively so. We see, as you said, we see loads of, so much technology that's intended for people with disabilities to use, which is just doesn't work in the way that people would want. And I used to say that we were in the business of producing products that people don't want to have to use, but actually, you know, when you think about it, a lot of that is because the intended users haven't been involved in the design process. 

00:17:32 Emily Reuben 

And also why can't we have products that they really want to use? 

00:17:34 Hayley Philippault 

Exactly. And if they are, then you get that insight, you get that Intel, you know, and you build it in. 

00:17:39 Gareth Mitchell 

And you’re proving yeah that it is technologically possible.  

00:17:42 Hayley Philippault 

Completely. Completely. 

00:17:42 Gareth Mitchell 

You know it's, there's an emotional side to this, but it's an engineering problem. At the end of the day that you're tackling. 

00:17:42 Hayley Philippault 

Absolutely. 

00:17:44 Nick Kwek 

I think it's kind of messed up that it's a bonus that the intended audience are part of the design process. 

00:17:54 Gareth Mitchell 

Like, who knew? Yeah. 

00:17:55 

Like what? Like what is the whole point of designing something. 

00:17:58 Gareth Mitchell 

Why not bring the end user in and hear what they think? Novel concept? No, absolutely. But it clearly doesn't. 

00:18:02 Eli Crossley 

You don't see consoles doing that. 

00:18:05 Gareth Mitchell 

Well, no ok. 

00:18:06 Eli Crossley 

A games console take or a video game. One of the key things to a successful business in terms of like I don't know, entertainment say, is you want feedback from your customers, you want customer satisfaction. And I think that's also really, really important and that's what we're trying to do.  I I I really have faith that this will work and we will succeed. 

00:18:31 Gareth Mitchell 

So how is all this technology helping you with your music? 

00:18:34 Eli Crossley 

So so I so I'm a singer and I play electric ukulele, which is basically a small guitar, 4 strings and obvious, like like. Currently in terms of playing the ukulele, I'm still able to do that. However, with the microphone I can never really pick up the microphone out of its stand because I don't have that upper arm function. So having this smart suit will really help with that kind of side of being the front man. And I think that in terms of playing an instrument, I can do it right now.  

00:19:11 Eli Crossley 

But if that ever say deteriorates I know I've got something there that can help me. Help me hold the mic. Help me down the line, play my instrument and do what I love, which is music. 

00:19:23 Gareth Mitchell 

And you have a new song. Don't you? 

00:19:25 Eli Crossley 

Yeah. So me and my band Askew you we just released a song and here it is. 

00:19:33 Song: Driving Seat by Askew (1’02) 

‘You have the world at your fingers, but you threw it all away. The trust we put in you, you let it go to waste. Power is a weapon. It can show us who you are, when you take the things that matter and leave us with a scar. By exposing your weakness and what you put others through I’ve got two words to say to you. So be honest and take the drop and see. You can't be the hero to set us free. So be honest and take the drop and see.’ 

00:20:25 Gareth Mitchell 

There you go. That's a little bit of Will's song from the band Askew and I thought that was lovely. So tell me how that song came about. Who's Will? 

00:20:34 Eli Crossley 

Will Ponds is one of the guitarists in my band and he came up with a riff at home and I I loved it. I mean, I. All of my band members are amazing. Freddie Wormleighton on drums, Alfie Lewis on bass. I know I'm naming them all. Will Ponds on guitar, Jay Guru-Murthy on guitar and then me and it’s  

00:20:55 Emily Reuben  

Eli Crossley on vocals. 

00:20:55 Eli Crossley 

Eli Crossley on vocals yeah. And he sent me a riff and he said I really like this. I think we can make a song out of it. So then we brought it into band. And then it's kind of at the start of writing a song like that, you're just playing around. So Freddie came up with a drum groove and then we slowly started adding parts. And then we got to a kind of phase what, where we quite liked where it sounded. So then what happened is, is is they loop the kind of the instruments and they loop like what we're playing, and then I eventually came up with a melody. So I record that into my phone and then I go home and then I write the lyrics. And that took, it didn't take long to write, and and we created this song in, I don't know, three to four weeks, so. 

00:21:43 Gareth Mitchell 

The best songs often happen like that, though, yeah, it's a. Well, it's just amazing to hear some of your music and you know, we've had to skip over so many parts of your remarkable story. But just before we leave it, and then we'll go to the podcast extra for our subscribers and hear a bit more about the technology that you're developing. But there is this story that kind of goes a little bit like, somehow you're living your life and then somehow you get to know a TV journalist and filmmaker called Nick. And the next thing you know, you're at South by Southwest. And I've missed quite a lot out there. So Nick, perhaps you want to, might want to tell us how this has all come about. 

00:22:21 Eli Crossley 

Fill us in Nick. 

00:22:21 Nick Kwek 

Well, gosh, where to begin. I essentially was thinking about who I would like to take to South by Southwest to perform and represent the best of British talent. And I came across Eli Crossley. The youngest ever performer at Glastonbury, has an incredible story, and his talent and his drive and his passion. 

00:22:39 Nick Kwek 

And so essentially by hook or by crook, I thought I'm going to get this guy over there to help him achieve his dream and break America, and we got funding from British Council and Arts Council England and the very generous support from British Underground. And Crispin Parry, who was the creative director of that, and hopefully he will be listening to that, shout out to you Crispin, you’re a legend. Thank you so much for believing in this this dream. 

00:23:00 

Hear hear. 

00:23:05 Nick Kwek 

And South by Southwest, as a organization, we're also behind us and they said let's go bring Eli over. Let's put him on the international stage. Let's hear his story and hear about this incredible assistive technology. And so we packed our bags and we flew over to Austin. We went there. He rocked the show. Brought the house down. 

00:23:26 Nick Kwek 

And along the way, met a bunch of incredible people and I, when I say incredible people, I mean, we're talking about rock'n'roll, legends, music producers. We've worked with everyone from R.E.M. to Westlife to U2 to Michael Jackson. And I told them about Eli's story, and they offered Eli on the spot, a recording contract. So we're going over to 

00:23:47 Nick Kwek 

Ireland in August to record Eli and Askew’s, first in studio professional recording, and after we came off the stage at Austin's Convention Center, we were met by a man called Phil  Tidy who was a legendary music video producer from, of everyone from the Spice Girls to Florence and the Machine to Oasis, to Libertines and The Cure.  I can go on and on. 

00:24:08 Nick Kwek 

And he came up to us and said I'm so touched by this message that we'd love for Askew to come to our studios in Soho to record their first ever music video. And I think that we also met Jon Bon Jovi by the way, yeah. Just throwing that in at the end. 

00:24:22 Gareth Mitchell 

I know Eli’s already dropped that name, but I'm glad you reiterated it. 

00:24:26 Nick Kwek 

And um, and I just think it's incredible that when you have a global platform like that and people listening, you can really change the world, change lives. And move things forward because people want to be able to make the best of their chance and connections, but they might not know how to position that. Whereas if you kind of show them the way, you lead them to the water and you hope they drink, but there's no point flogging a dead horse, Gareth.  

00:24:58 Nick Kwek 

But umm, no it's, and it was incredible experience for me as a technology documentarian and commenter, but I'm so happy that it kind of felt like a win, win win on multiple levels. I kind of felt, I felt privileged and happy that I was able to make Eli’s dream come true in a small way. I don't think we're there yet. I think Eli's got way more to go and he's got far greater ambitions than performing South by Southwest. 

00:25:17 Gareth Mitchell 

He’s still got that second difficult album to come?  

00:25:18 Nick Kwek 

Exactly. Exactly. 

00:25:25 Gareth Mitchell 

It’s still gonna happen. 

00:25:25 Nick Kwek 

And yeah, and and now. And now we're here. 

00:25:27 Emily Reuben 

Still need the first album. 

00:25:29 Gareth Mitchell 

Well, I'm just thinking ahead. 

00:25:32 Gareth Mitchell 

So, so. So how about for for all of of you, I sort of go around the table really just asking what what that has meant to you. So, Hayley, how about you? Did you, I mean clearly you didn't see any of this coming, but what's it meant to you to be swept up in this innovation charity rock'n'roll crazy story? 

00:25:52 Hayley Philippault 

That's just been a dream come true, so I've spent my whole career in this industry. You know, designing from about everything from one offs to like small products of daily living, um you know and and you you get to know the industry and then you know, you meet a charity like Duchenne UK and the amazing community that we have, you know, who connected to us through Duchenne UK and the determination and the drive to solve these problems, overcome these barriers, just an absolute refusal to take no for an answer. And just the drive and  

00:26:26 Hayley Philippault 

determination. There will be a way. We will find the way and we will, we will make it and I really see us, as you know, although we said, we're a small bunch of people, 

00:26:34 Hayley Philippault 

you know, we are so much bigger than that because we have this amazing community. We are like massive collaborators in our space and we just welcome people in. So despite, you know, being a charity, I I think helps really because, you know, we're not here as a commercial entity. You know, we've got nothing  

00:26:55 Hayley Philippault 

that we're kind of protecting about.  What we want to do is we want to share. We want people to come in, we want people to bring their technology to us and go, hey, I've got this. What about this, do you think this could help? 

00:27:04 Hayley Philippault 

Great we can help you build that in. We've got these amazing people who we’re working with, amazing young people who are testing stuff, giving us their thoughts, their insights and helping us tune things to be how they should be. 

00:27:16 Gareth Mitchell 

Yeah. And and Emily, I'm, I'm asking you as the successful founder of a charity and as a mum and as a human being, what it means to you when you see your boy on stage at Glastonbury, at South by Southwest, being offered recording contracts and deals, access to amazing studio space to to make tracks. How does that feel? 

00:27:37 Emily Reuben 

I mean, I'm just so thrilled for him and the opportunities that he gets. I mean, I get asked that question a lot and I I you know, it's so hard to try and find something new and interesting to say, but that, you know, the South by Southwest experience 

00:27:50 Emily Reuben 

was so extraordinary because we were showcasing not just the work for the charity, but Eli performing on stage and the way he just comes on stage in his wheelchair and he just has this sort of presence, this commanding presence, 

00:28:04 Emily Reuben 

that people stop and listen and look, and then they get involved and then seeing the expressions on their faces change, like my God, this is really good, you know? And and all the opportunities that Nick opened up for us and created for us, you know, it was, I mean, most of the week sort of goes by and in in a haze of margaritas and tacos. I think we had tacos and margaritas for breakfast and lunch and dinner. 

00:28:24 Gareth Mitchell 

Welcome to my life. 

00:28:26 Emily Reuben 

So. And I'm not complaining, you know, but the buzz and the energy was infectious. And and it's, you know it was great, because it felt like, yes, this is where we belong and and this is where we can gain traction for what we’re doing? 

00:28:40 Gareth Mitchell 

OK and maybe a difficult question then, but to what extent is this or might it be a race against time because Eli’s already said that there might be a time that he can't do what he can do at the moment and yet, you know, technology development, of course it can be quick. You're incredibly agile, but it takes time. Do you see it as a race against time? 

00:29:01 Emily Reuben 

Everything is a race against time with Duchenne and you know my my big sadness and regret is that when we started the charity, we wanted to find, fund treatments and and they are coming now. But maybe you know too slowly, but with the technology I feel sort of anger more than more than fear about the ticking clock because I know that the technology is out there. I know that the brains are out there and I just feel enraged that no one has done this until now.  

00:29:33 Gareth Mitchell 

And that's what keeps you going to an extent. 

00:29:36 Gareth Mitchell 

OK. 

00:29:37 Eli Crossley 

I I think also obviously like from my side, being told for you have a reduced life expectancy. All these things possibly being told that some stuff is too late. I mean, yeah, I I don't know how to describe it to people who don't feel this, but it's terrifying, terrifying knowing that I won't be able to live as long as lots of people. 

00:30:00 Eli Crossley 

However, I've really come to the realization, but the only thing I'm afraid of is not achieving what I want to do in my lifetime, and I want to leave this world knowing that I've done everything that I wanted to do and accomplish lots of things,  

00:30:16 Eli Crossley 

and playing Glastonbury already, playing South by Soutwest, already a lot's happened and I just want to achieve everything I can. And who knows, I might die of a drug addiction when I'm 26.  

00:30:22 Gareth Mitchell 

Well, that's the way to go. 

00:30:22 Eli Crossley 

Like like like like like your average rockstar. But I I just want to do, I want to get out there. I want to make music. I want to inspire people. I want to do all these things and I want to yeah. Just I, yeah. I'm not afraid of dying. Just want to do everything, but I feel I need to complete in my life. 

00:30:48 Gareth Mitchell 

Well, there we’ll leave it I think.  Eli it's been an honor and a privilege. Thank you. And to all of you around the table, to Nick, to Hayley, and to Emily. The producer is Ania. I'm Gareth. 

00:31:00 Gareth Mitchell 

And a big thanks to Josh Pullen here at All is Joy Studios. He's been our sound technician in, well, I think it sounded like an absolutely lovely podcast. So big thanks to Josh. And if you subscribe to our podcast extra, then there is more where this came from. Otherwise, we'll see you next week. Have a good week, folks. Thanks for listening. Bye, bye.