The Happy Pod: My friends made me a new hand

0:00This BBC podcast is supported by ads outside the UK. This is not the future we were promised. Like, hell that out for a tagline for the show. From the BBC, this is the interface, the show that explores how tech is rewiring your week and your world. This isn't about quarterly earnings or about tech reviews. It's about what technology is actually doing to your work and your politics, your everyday life and all the bizarre ways people are using the internet. Listen on BBC.com or wherever you get your podcasts. This is the happy pod from the BBC World Service. I'm Holly Gibbs and in this edition, it felt really special and like good to me like because showing my friends like this is what it feels like to make one that feels like what it feels like to have a prosthetic hand.

1:01The teenager whose classmates helped make her new prosthetic hand, how a new drug is transforming the lives of children with a severe form of epilepsy. He's able to enjoy life like any other child which is it's everything and more to me. It has this vivacious lust for life. The students using AI to help rescue people trapped after earthquakes. We are very focused and we want to make it so that it can be used or deployed than actual like rubble zones because we want to have that impact. Plus, the scientist saving a plant that's crucial in tackling climate change. We start in New South Wales, Australia, where a group of teenagers have been working together to make a new hand for one of their classmates. 14-year-old Lois Agnello was born without part of her left hand. During a lesson about empathy and technology, she asked her teacher whether the class could

2:03use their 3D printer to make an improved version of her prosthetic. The idea has now grown into a passion project with the students wanting to make more for people who need them. I spoke to Lois and her teacher Lloyd Godson and started by asking Lloyd about the project. It started out as just a normal technology lesson and we were looking at how designers have to put themselves in other people's shoes to understand how the people feel when they're designing a product. We're talking about empathy. Lois said, I've got this really cool video I'd like to show the class. She brought up the ABC video of her receiving her first hand and she was six years old from Matt Boteau. The class watched this and there was probably about five or six members of the class who were just completely taken by this video. It was quite an emotional thing to see. Lois as a younger. After the class finished, they said, hey, we've got a 3D printer. Can we not try making one ourselves? Lois formed a group of about ten people that were about

3:09her age like 13, 14 years old and we reached out to Matt at the free 3D hands and yeah, it was amazing. Lois, can you tell me why you wanted to make a hand with your classmates? It just like came to me and I'm like, hey Lloyd, can we make a hand? And he's like, yeah sure, let's do it. It felt really special and like good like to me like because it's just showing my friends like this is what it feels like to make one and feel like what it feels like to have a prosthetic hand and all that. I think for you, Lois too, you were saying that you were quite surprised that your friends wanted to help you like you were saying how it felt really nice that they actually cared. They actually cared enough to want to learn how to do this and make one for you. And Lois, can you tell me what your favourite part of the process was? My favourite part was probably actually getting the people to join like the project and stuff, seeing people like asking me can I join this? It looks

4:16so fun like and I'm like, yeah sure. It was amazing watching all these young people being so intrinsically motivated to do something. It wasn't something that I said as a lesson, it wasn't something that they had to do for school. It was something that just grew out of a lesson that we taught on empathy and then the students just ran with this idea and they kind of consumed us for the next six months. Lois, how did you feel using your hand for the first time? Uh shocked that we actually did it like and proud. I was like, I felt like I was in a dream. I was like, this is crazy. It's actually working. Crazy. It's like, I was going psycho. And Lloyd, what do you think that the students got out of this? Oh, I think you know they got to understand that just these small steps can make such a huge impact. So like their projects got nationwide, it's gone global. They've you know directly impacted one

5:18of their peers and saw the difference that can make in someone's life just by taking you know half hour out of your day twice a week. They're able to have such a huge impact. Now coming back to school this year, one of the first things the kids did were come up to me and said, can we run design for change again? Can we start our weekly meetings? And we've made a hand and now the next step for us is to try printing an arm. The students are really keen to do more of this basically. I mean, and this is why Matt does what he does. He said that the first time he made a hand for someone, he got a video back from the recipient and he realised when he saw that video, that this is what he wanted to do now because the kid in the video that had received one of the hands was just so happy and he put a smile on this kid's face and that made him feel really good. And I think this is what the students are experiencing now. Would I be right? Yeah, the kids have just had that sensation, that feeling of we've done this thing but made lowest feel really good. That feels really good. We want to do that again. And so I think that's why

6:19they're keen to now make an arm and find more people that they can print hands for and really get that sense of satisfaction of helping people in the world. Lois, why is it important that we all embrace our differences? Because if like everyone was the same, it'd be like a bunch of robots on us. We want everyone to be different. Everyone is good at what they do and I think that's in terms of just for you. Yeah, for you. Yeah, that's good. And my final question is to you, Lois, do you want to do something like this when you're older? I would love to be an engineer but also my dream ever since I've been a kid has been I wanted to always be a pastry chef like a french pastry chef. I think also being an engineer would be good, but I'm trying to decide. Lois Agnello and Lloyd Godson. Next to a drug that's transforming the lives of children with a severe form of epilepsy. He was having hundreds up to thousands of seizures in a day.

7:26From the moment we started on the trial, seizure lens, we went from minutes to seconds. So that enabled us to start living our lives. That's Lauren Trulove, whose son Freddie was one of the first to receive the new treatment for Drave syndrome, which also causes developmental delays and problems with movement and communication. The small trial in the US and the UK showed that patients had up to 90% fewer seizures and the drug was safe for children and adolescents. Freddie, who's now eight, has been having seizures since he was six months old. Lauren says the change has been incredible. He's climbed mountains, we can go out walking with the dogs, walk around the lakes and he's even been skiing. He's going to school, he's reading, he's able to enjoy life like any other child, which is it's everything and more to me. When Freddie was diagnosed, it was really difficult to know what that future looked like

8:27and we thought we had everything taken away from us. I think now with the alertness and the development that he's gone through in the past four years, he's able to enjoy everything about life. He loves being with his friends, he loves being at school, he has this vivacious lust for life. The trial has enabled him to find his own feet and his own path and his own mind and that really is quite something. The new drug is injected into the spine and travels to the brain to manage the underlying cause of the condition, which in most cases is a faulty gene. My colleague Tim Frank spoke to Professor Helen Cross, one of the lead researchers from University College London. Epilepsy is a symptom, so there are many, many different causes of epilepsy and Drave syndrome is a particular early onset epilepsy. I say early onset on session the first year of life and then they subsequently get very frequent seizures, frequent admissions to hospital

9:28and get developmental slowing. So in the longer term, they have a lot of other problems which include learning difficulty, walking difficulty, feeding difficulty and behavior problems. And these seizures that you're talking about, I mean they can be really quite severe, can't they? They can, they have different types of seizure but also then they can be very frequent and also they can be quite prolonged needing emergency treatment to stop them. Tell me then about this drug, how does it work? We know that Drave syndrome has a genetic basis and more than 90% of those with Drave syndrome have a particular abnormality. What are traditional treatments have done, have only treated seizures. They have not looked at the underlying cause of the problem. What the Rubenersin does is by injecting it into the liquid around the brain, it increases the production of protein from the normal gene. All the Drave have one abnormal copy and one normal copy. It doesn't do anything to the abnormal copy of the gene. It's increasing

10:31protein production from the normal copy. And so with that we're hoping to tackle all the problems, not just the seizures but the other neurodevelopmental and walking problems as well. Can I ask about how you trial a drug such as this in children, other particular challenges for trialing a drug such as this? It is always challenging to do clinical trials in children but actually we have to think of it that this is the safest way to evaluate drugs in the fact that the children are very carefully monitored throughout the trial. I mean it's challenging, we have to make sure that the family is very aware of the risks and the possible benefits but they are very carefully monitored. This sample was great, if I'm wrong, it was relatively small. So where are you going to take this next to just I guess check on its efficacy and also its safety? So this was a small trial but it was also variable in whether children had one dose or multiple doses and it was open. We knew who

11:34that they'd all had the dose of drug. The next, the double blind phase is that children are recruited and randomized whether they receive the drug or they have what we call a sham procedure so they don't have injection of the drug and then they are monitored and eventually those who don't get the medication will get the medication so they will at some point get it. So we need to recruit around 170 patients worldwide. Before we came to you, we heard a little clip from Lauren, the mother of Freddie Trulov, eight years old whose life she says has just been transformed for the better. I mean I'm sure it's exciting, the science that you're involved in but it just must be glorious to see the effect this is having. I mean it is early days but it is tremendous to see benefits. This is in a really complicated very difficult epilepsy syndrome where you know the diagnosis is really devastating for the families because they don't see any progress in their children at all. So to see a real hope that we could do something about that cause do something not only about

12:39the seizures but the neurodevelopment is incredibly exciting and actually something I never thought I would be embarking on when I started my career. Professor Helen Cross. Coming up on this podcast, we meet a Japanese man who's become famous for walking dogs. I have been saved my life, I finally get to see the huge cookie dog looking man. I just met a real-life Pokemon trainer. To when two dogs he's walking. If you live in Tokyo, you already know this legend. We'll hear more from that man about a dog later. This is not the future we were promised. Like hell that out for a tagline for the show. From the BBC, this is the interface, the show that explores how tech is rewiring your week and your world. This isn't about quarterly earnings or about tech reviews. It's about what technology is actually doing to your work and your politics, your everyday life.

13:41And all the bizarre ways people are using the internet. You place those sensors on a collapsed building and then we have an AI model that we have trained over the summer to understand the complex medium of a rebel site. The signal is processed through that model and then as a result it tells you if there is anyone trapped if there are any survivors and then the next step we want to work on is to be able to locate these people.

14:44A very simple version of it is like an app on your phone and let's say your phone has a microphone and basically the sensor that we use is a microphone but for signals or waves traveling through like physical media which is like rocks or like concrete rather than just air and what we do is basically pick up those and then using our app take out extracts noises that are created by humans that are under the rubble to be able to say or there is someone here or not. Why did you want to create this device? We've always grown up with the fact that there has been earthquakes and there will be earthquakes and after the 2023 earthquake there has been a very big amount of losses in terms of both lives and a lot of buildings have collapsed as well but also one of the provinces that has been affected the most is actually where my that is from where I visit every summer and where I have most of my family at. Yeah it's really hard to grasp I think like the notion of like growing up with earthquakes

15:49when you're not coming from a concede that doesn't have them like that much but I think like people who are coming from like earthquake prone zones will understand that you just grow up knowing that earthquakes can happen and you have that fear inside of you as if like it's like innate because like you grow up hearing these stories even since like you're a kid you hear about your grandpa you hear about your dad everyone like almost every generation has experience like a big earthquake at the center here I can say so like you hear about these stories about the losses they had so you grow up knowing and feeling them and what's been the reaction of your families who must be very proud that you have taken like you say their experience and turned into something really really positive. My family my dad's side who are from Hatay has been really supportive and they're really proud about what we're even not about what we have achieved but what we are trying to achieve they have been very supportive and very motivated about the cause as well obviously.

16:52So well that brings me on to my next question which is what is next for Rescube? We're right now like trying to expand our reach we're right now in the process of like making our hardware better and we're also looking to focus on our models and our software side over the summer and we're working on it like all the time like during school after school every weekend it's just like we're very focused and we want to make it so that it can be used or deployed or at least like people can start using it in like pilot tests and actual like rubble zones because we want to have that impact the only reason we're doing this is to be able to help in the process so we just want to have that as soon as possible. On a personal level how does it feel to be working on something that is going to help people? It's incredibly exciting anytime we sit down to work or do something it doesn't feel like work but rather a personal motivation that we're chasing

17:52it's very enjoyable and I'm willing to put in a lot of efforts and do sacrifices if necessary to bring it into a level where it can actually be deployed for earthquakes and hopefully save lives. Adil Ida and Arda Canchal. Sea grass meadows are one of the world's most valuable underwater habitats as well as providing food and shelter to thousands of species the plants play a vital role in tackling climate change by absorbing carbon dioxide but sea grass is also under threat from global warming with most species unable to tolerate water above 25 degrees Celsius. Now though scientists have discovered that some plants are evolving to survive at higher temperatures Ben Wyatt has been finding out more. Given the recent snowstorms it's an icy path that leads to the Paul Sabayne's Coastal Ecology Centre in the Acetic National Park of Maryland. Hey, Steven, nice to meet you. Nice to meet you. Nice to meet you, how's it going?

18:57Yeah, good. The team here are preparing to take me across the lagoon of the synopics and bay so we can get out close to the sea grass meadows they've been working so hard to restore. While the boat thaws outside in the midday sun I sit down with leader of the sea grass project Professor Steven J. Tomasetti of the University of Maryland Eastern Shore to learn more about its focus. We're as a team working on eel grass it's the foundational sea grass species of the U.S. East Coast essentially. We can find it anywhere from North Carolina up through Canada but here in Maryland we're near to the southern edge of its range. They're not the flashy coral reefs but they serve a lot of the same function. This is Katie Tanna a PhD student working on the project under Steven's guidance. These vegetative ecosystems provide the physical structure for a lot of biodiversity we have sea horses I've seen sharks out in the eel grass meadows it's a lot of shellfish but also a lot of culturally important fish species. All in all it's a very useful plan to have

20:00around only it's fast disappearing. Steven's team turned to genetic science for help. My name is Stephanie Camel and I'm a professor in the Department of Biology and Reem Biology at the University of North Carolina Woolmerton and I'm the genomics lead on this project. So in some meadows challenged by higher temperatures a small number of plants have been mutating or changing genomically. When we're talking about genomic change at the very basic level we're asking have there been changes to that DNA sequence does that change enable me to be taller live longer be more heat resistant. So when I go out and sample sea grasses I sequence the genome and I will find change has occurred in a gene that regulates heat shock. By comparing the DNA of the variants with that of normal eel grass Stephanie is able to isolate the exact genes associated with heat resistance. The team using Stephanie's data can now focus their attention on harvesting just the seeds that contain heat resistant genes before replanting

21:04them in dying meadows. It was this technique that Katie used to seed her new eel grass meadows last year. Around March when all the pollination has occurred and seeds are developing we then go out and we pluck these reproductive shoots they kind of look like green beans and then hold onto them until they're ready to germinate to grow then it's just a matter of moving them to where they need to be. So our hand in the genetics is very low tech it's really just moving seeds around up a right time. And to find out how those meadows were coming along it was time to put on some weeds. It's coming up to my hips and this water is at zero degrees Celsius so just praying there are no leaks in the weeds. The eel grass what kind of depth does that normally grow in? Anywhere from like a couple inches to six feet maybe. The water today is too murky to see the

22:07sprouts and grass but Katie hopes the meadow will not only have regrown but will then also flourish in the hot temperatures of the summer if it does the team of that bit closer to securing the future of eel grass meadows in Maryland. The effort here is costing $300,000 over five years but for Stephanie it's taxpayer money well spent. We need to take a much more active role in managing our ecosystems we're really not sitting back we're like okay we're going to try these things because of the absence of vadas we're just going to what just let seagrass loss continue. I mean we can't let that happen. Professor Stephanie Kamel ending that report from Ben Wyatt and for more on this story just search for people fixing the world wherever you get to your BBC podcasts. We end in Tokyo with a man who is not your average dog walker. If you've been to the city's famous Harajuku district there's a good chance you might have seen and taken a photo of a man who spent years walking up to 32 small dogs around the area every day. Will Leonardo

23:13went along to find out more about this social media sensation. I just met a real-life Pokemon trainer. If you live in Tokyo you already know this legend. For anyone coming to Tokyo one of the first things you might notice is the fact that there's so many little dogs everywhere and they're all so well turned out many of them wearing little coats especially because there's nothing to win to here now and they all look like they get groomed more than the human owners. One of the people that's most famous for walking their dogs around the city centre of Tokyo is Norbuaki Moribe. He is known as the Harajuku dog walker. He's often seen interacting with tourists and local people. Well he runs a groomer salon on a quiet street in central west Tokyo and I've come down to have a quick chat with him. You've picked a very famous area to walk around which is full of lot of tourists. People go there to shop. I'm just wondering if that was maybe a deliberate choice or something that just kind of

24:13happened naturally. When I started walking these dogs I was suddenly inspired to take this route and that's it really and then before I realised there were lots of tourists. People from all over the world taking photos of my dogs getting on well which really made me joyful but originally the walks were during covid in 2020 when there was absolutely no one around. I think from a foreign perspective dogs in Tokyo tend to be very small. They're very well groomed. Why do you think that is? Compared to the rest of the world Tokyo is known for its small dogs and I think that's because people's homes are smaller. Most dog owners live in apartments and globally there aren't that many people like me who walk large numbers of small dogs. That's why I think I've stood out. The most popular breed here is the Poodle and most of them get a cut once a month which is why I think Tokyo dogs look especially stylish. Not working as Tommy's to meet him in a corner of Yoyogi park which

25:14if you've been to Tokyo you might know as next to the Big Meiji shrine and just up against Harajuku where he's going to continue his four hour walk. He's told me to meet him a bit into his walk partly because he says he doesn't want me around while the dogs do their business. Moribu-san, I'm sorry to interrupt you. Thank you very much. How many dogs do you have today? Today is December 22nd. 22nd. Boston Terrier. Vision Freeze. Shibain Poodle Poodle. He's now completely in so good but people take him very seriously. You get the lights turned green. Well every other person is turning around to take a photo of Norbuaki as he glides past in the center of his sea of dogs. Let's talk to some of them and see what they made of the spectacle. They're very well behaved. They are very well behaved aren't they? They don't seem to bark at all. I don't know. What happens when they go to the toilet do you know? I hear that he gets up done in the first hour of the walk. I've seen before so I used to come to Tokyo but I walk this street 100% I see him.

26:20I actually find it quite inspirational. Back home you don't have anything like that. They all seem happy they're not fighting each other. We've been in China and then come to Japan but everyone's got dogs. In other countries those who walk lots of dogs tend to focus on larger breeds and big dogs are easier to handle. They move around in a more precise way. What's the kind of interactions you've had that stuck in your memory the most? Every day is interesting and every day there's different people. The fact they all enjoy themselves so much makes me feel great. And some even remember me. They say oh I saw you a year ago before showing me a photo. I'm very happy that I've stuck in people's memory. I really hope I'm making everyone feel peace and love. Nobuaki Morabe ending that report from Will Leonardo.

27:26And that's all from the happy pod for now. We'd love to hear from you. As ever the address is global podcast at bbc.co.uk. This edition was produced by Rachel Volkley. The editor is Karen Martin. I'm Holly Gibbs. Until next time, goodbye. This is not the future we were promised. Black held that up for a tagline for the show. From the BBC this is the interface. The show that explores how tech is rewiring your week and your world. This isn't about quarterly earnings or about tech reviews. It's about what technology is actually doing to your work and your politics, your everyday life, and all the bizarre ways people are using the internet. Listen on BBC.com or wherever you get your podcasts.