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Welcome to Connecting ALS. On this week's episode we learn about Luka & The Lights.
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
This transcript was exported on Dec 08, 2022 - view latest version here.
Anjo:
A lot of parents have difficulties talking to their children about it, and we want to help them and give them something just a little help to find the right words to explain it, and also to show them that it's okay to discuss this with children.
Jeremy Holden:
Hello everyone and welcome to Connecting AlS. I am your host Jeremy Holden. When Anjo Snijders was diagnosed with ALS at the age of 35, he and his wife Sascha had to figure out how to explain the disease to their young children. The teacher quickly discovered that there was not a lot of information available to help them explain ALS to kids. That gave rise to Luka, a robot they created to help explain ALS to kids. Anjo and Sascha eventually teamed up with illustrators around the world and Big Grin Productions to create Luka and the Lights, a short film about a robot adorned with lights, who learns he has ALS, and how he comes together with his community to figure out how to navigate living with the disease. I caught up with Anjo, along with director Toby Cochran, producer Adrian Ochoa, and Big Grin chief marketing officer, Diana Hernandez, during the recent International Alliance of ALS/MND Associations annual meeting in the Allied Professionals Forum, in order to learn about Luka, and their journey to bring the film to audiences around the world.
Anjo thank you for being with us this week on Connecting ALS. And T we'll get to you shortly. But Anjo, I want to start with you. Tell me a little bit about your history, your connection with ALS and how you got into the space
Anjo:
Well, yeah. I'm 40 years old and I got diagnosed with ALS five and a half years ago. I was working full time in the Army back then, and I got the terrible duty to tell my children I had ALS and what that would mean for them. Even though I'm a teacher, it was the hardest conversation I had in my life. And there were no tools available to help me with that. And so my wife was also a teacher, and I decided to write a story that could help children and parents to have this conversation and share their story with their peers and their teachers and their friends. That's how Luka came to be.
Jeremy Holden:
Luka and the Lights. We're going to get to this in a minute. Did you recognize that there was a gap in terms of resources for kids to understand what was happening to you?
Anjo:
Absolutely, there was no real visual enticing material for children that on a basic level explained what ALS was and what it does. And we came up with the analogy for the light bulbs, and because Luka is a robot you can literally open him up and look what's wrong. And also the robot, he's relatable for every ethnicity, every gender. Well, there's nothing not to love about Luka obviously, but we wanted kids to be able to relate to Luka, whether or not it was one of their parents or a friend or whoever fell with ALS. So that's some of the motivations behind Luka.
Jeremy Holden:
So you have the concept, the idea of Luka. What was the next step from there?
Anjo:
Well, we wanted an animated film and we had absolutely no knowledge about what that would entail. So we thought, we'll find a college student who like to do this over the summer or something, and then we fell into a rabbit hole and ended up on the west coast of the US because that's where movies are made, and met up with Big Grin Productions. And they have guided us on the path of making a film along the way.
Jeremy Holden:
Sort of bringing in T. Where did you go? How did this come to life from concept to execution?
Toby Cochran:
Yeah, so Sascha and Anjo reached out to us Big Grin and I'm Toby Cochran, CEO and founder of Big Grin. And we took their story and took their original designs of Luka. Luka was already charming to begin with, so we just needed to develop Luka in a way that would work in animation and make sense to actually move the character around and make Luka come to life. And so we redesigned Luka and started really just thinking about the world in which Luka lives in. It's a robot world, but is everything in the world made of robot parts for things like that. And I spent a lot of time with the juxtaposition of these metal characters, but in a very naturalistic world where their home is made out of wood and nature is embodied into their environment and things like that. Just to have this nice duality of what we would think naturally being a cold, hard edge character, but living in this very warm loving world.
Jeremy Holden:
What was your experience? What did you know about ALS before you started this project, before they reached out to you?
Toby Cochran:
So my producer, Adrian, actually knew more about ALS. I knew about it from the Ice Bucket Challenge, but to be honest, participating in that, I didn't really know where or what was going on with that disease, and the cause and with the foundation and things like that. But with all the projects that we take on we do heavy amount of research with everything. So interviewing Sascha and Anjo, working with Dr. Melinda Kavanaugh on our team as well, just interviewing her and asking lots and lots of questions. And all of that goes back into every aspect of the storytelling, the designs, everything that you see and feel on the film is based on sort of truth and understanding of this disease, and for anybody around the world that's been affected by that.
Jeremy Holden:
What's the goal of the movie in terms of... What are you hoping the target audience takes away or learns by the end of the film experience?
Anjo:
Oh, we want to empower children and parents to talk about this, to talk about what ALS does to their lives. Because a lot of times children become isolated and it's hard for them to talk about it with their parents, but also with their peers and their teachers. So we want Luka to bridge that gap and empower them, give them words, which is odd because Luka, the film is a languageless film, there's only robot gibberish in the film, but there's a good reason for that. We want this to be universal. We want this to spread over the world. And even in places where even less tools and materials are available to children, this can shine a light on ALS. So that's very important to us. So the empowering of parents and children. A lot of parents have difficulties talking to their children about it, and we want to help them and give them something just a little help to find the right words to explain it, and also to show them that it's okay to discuss this with children.
Jeremy Holden:
You touch on the isolation and you mentioned Dr. Kavanaugh. I know that some of her research that's been brought to light is the way that that kids who are dealing with this often don't feel like they can talk to their peers or they're not sure how to. No one their age that they know is going through the same thing that they're going through. Have you worked in a languageless film before?
Toby Cochran:
In my projects, and also Adrian has as well. Adrian, you want to share a little bit about that? WALL-E?
Adrian Ochoa:
Oh yeah, that's right. I forgot about WALL-E. Yeah, so my name is Adrian Ochoa. I'm the producer of Luke and the Lights. My background is I spent 17 years in at Pixar working in production. So yeah, WALL-E was one of the first animated films that basically was languageless for the first half hour.
Jeremy Holden:
Yeah. How did that experience inform working on this project and kind of storytelling without one of the things that I think of as key to storytelling anyway?
Adrian Ochoa:
Yeah. So that's the beauty of animation is like you can have the characters portray and emote without speaking. And that's the beauty about film is like you should be able to turn off the sound and know exactly what's going on.
Jeremy Holden:
That's incredible. You're not just somebody working on the film though. You also have a personal connection to ALS.
Adrian Ochoa:
Yes. My personal connection to ALS is that my grandfather passed away in 1994 of ALS.
Jeremy Holden:
How did that experience impact your approach to the work on Luka and the Lights?
Adrian Ochoa:
It's actually brought back a lot of memories that I haven't thought about in a long time. When he got diagnosed, he passed away within a year, but learning more about the disease and it just brought back so many memories during that time that we were with him.
Jeremy Holden:
Yeah. It occurs to me that as a languageless film it allows you to be global and not be isolated to one culture, one language.
Anjo:
Luka has to deal with a lot of loss of functioning, including speak. There's a very beautiful scene in which he tries to express himself and it doesn't work by a speech. And then his friend comfort him and says it's okay and understands him in another way. And that... I can't wait to show you all, but that it is definitely in the moon.
Jeremy Holden:
I can't wait to see where are you all in the process right now?
Adrian Ochoa:
Right now we are about 60% done with the film.
Jeremy Holden:
Okay. This is incredible, incredible story. Any other thoughts about the process of making Luka and the Lights?
Diana Hernadez:
Yeah, so I'm Diana Hernandez and I am the CMO, the chief marketing officer for Luka. And one of the key important elements of Luka and the Lights is we see this beautiful, charming robot that has light bulbs. In the beginning of the movie. We see him living a great life, his day to day, and much like many people that are diagnosed with ALS, something doesn't work quite as intended that causes that red flag of something's going on. We will see Luka go to the doctor and I have that experience of being diagnosed and being told that he's diagnosed with ALS. And then we see his journey and how he responds to his diagnosis.
And we also see his friends around him that help him and are part of the caregiving process because we recognize that yes, it is somebody that is diagnosed with ALS, it is also an entire community that comes together and supports. And that's very important that we learned in connecting with Sascha and Anjo of how it truly has been their friends, their family, even their children that have stepped into a caregiver role that's important to showcase in this film so that people really... Yes, it's for the community and also for the people that are not engaged in the community. It's similar to the way they know the Ice Bucket Challenge. We really want the world and be aware of what is ALS and inspire hope and a generation that doesn't have to live with this disease.
Toby Cochran:
Yeah, and allow people to live their life with dignity. And that's part of what we see in Luka's journey. And a lot of that inspiration comes from Anjo and Sascha in the story of Luka's character and really just seeing, okay, I've been diagnosed with this terrible disease, what do I do with that now? What are the decisions I get to make out of that? We get to see Lukas's choices on how he navigates that.
Jeremy Holden:
It's a really beautiful message. And I think you were talking about the impact on the whole community. And we've heard that from so many people that we've been able to talk to on Connecting ALS, that it's a diagnosis for the whole family, for the whole community, for the whole friend group. What can you tell me about the animators who were working on the film?
Adrian Ochoa:
Yeah, we have such an amazing crew. We have over 77 artists working around the world, and man, if it wasn't for them, we wouldn't be able to create this beautiful film. I mean, they've given us their everything. They've gone above and beyond helping us with this project.
Toby Cochran:
Yeah. Pound for pound, we are punching way above our weight class and the team as well. There's 77 artists from 15 different countries. A majority of them have been impacted directly from ALS. They either had a family member or a friend have it or pass away from it. So for a lot of them as well, this is the first time a character in animation has ever depicted this disease. So a lot of people on our team and others as well as we're starting to share this with the world, are very excited to see what Luka's going to do for the community, and for the world.
Adrian Ochoa:
So we're 60% done with the film, but we can't really finish the film without additional funding. So we would love people to go to Lukaandthelights.com or the Lukayouthfoundation.org to donate for the film.
Jeremy Holden:
Wrapping things up, we were having this conversation out in San Diego, kind of a global community coming together to talk about progress. Anjo have you heard anything this week that kind of inspires a hope in you that we're moving in the right direction in the fight?
Anjo:
Absolutely. The connections made here at the Alliance, research, connecting and cooperation, trying to rule out duplication in a bad way, and also meeting everybody in person again for first time in three years, there have been a lot of conversations on the side between all those researchers, clinical people, advocacy groups, and that it makes a change. Yeah, I've got a lot of hope that we will end up curing this disease and make the film obsolete.
Jeremy Holden:
Well, I can't wait to see it. Anjo it strikes me, you said at the top that you were an educator and you're still teaching people today. So thanks for teaching us a little bit.
I want to thank my guest this week, Anjo, Toby, Adrian, and Diana. We'll share links in the show notes where you can learn more about Luka and the Lights, along with ways for you to get involved with helping bring that film to life. If you like this episode, share it with a friend. And while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Racecar, post production by Alex Brower, production management by Gabriel [inaudible 00:15:48], supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.
ConnectingALS_120822_Ready2 (Completed 12/06/22)
Transcript by Rev.com
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