I'm Dying to Tell You
I'm Dying to Tell You
Animated Film, LUKi & the Lights: Helping Children Understand ALS/MND
"LUKi and the Lights" is not just an animated short film; it's a beacon for children trying to grasp the complexities of ALS. Inspired by the real-life journey of Anjo Snijders and Sascha Groen, this episode unravels how their personal ALS/MND experiences fueled the creation of a groundbreaking resource for families worldwide. Hear how the layers of creativity, medical accuracy, and emotional authenticity make this film a vital tool for understanding ALS/MND.
Meet my insightful guests — Toby Cochran, Adrian Ochoa, and Dr. Melinda Kavanaugh — who reveal the unexpected journey behind this project. Dr. Kavanaugh shares her unique path into the collaboration, while Toby and Adrian discuss how this team navigated challenges to create a story that resonates globally and transcends cultural and linguistic barriers. Their dedication ensures the film retains its heartfelt essence and medical integrity, proving invaluable for children and families.
Beyond the screen, "LUKi and the Lights" is making waves with its global reach and festival appearances, even vying for Oscar consideration. As a follow-up to this episode, we invite you to participate in a Special Virtual Screening, Tuesday, November 12th at 7pm EST, where you can connect with the creators and delve deeper into the mission of spreading ALS awareness. Join us in supporting this initiative by visiting Global Neuro YCare’s website to help bring LUKi's message to families worldwide. Thank you for sharing LUKi with your friends and family. If it's on your heart to review this episode to help share LUKi, thank you for doing so!
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Hey, I'm Paul.
Speaker 1:And I'm Christian.
Speaker 2:Welcome to. I'm Dying to Tell you inspiration shared by our mom, who is dying from ALS. There is no cure for our mom or anyone else with ALS, but right now she's on a mission to find and share stories of inspiration Coming to you from Cincinnati, ohio. We're happy to introduce the one lady we've both loved since the first day we laid eyes on her the queen of the queen city, our mom, your host, lori.
Speaker 3:Hello, I'm Lori, your host of. I'm Dying to Tell you Thank you for being here. Unique, where the focus of our chat is about Lukey. Lukey, lukey, my only robot friend, the only robot that has been diagnosed with ALS. Lukey is the star of a film, a short animated film, that was born out of love and necessity to help tell children about ALS.
Speaker 3:If you've been listening for a while, I actually spoke to the creators of Lukey and the Lights, which is the name of the film a young couple who had ALS come into their life and needed a way to tell their young children. So if you go back to 2022, you'll find the episode, and at that time the film was going to be called Luca and the Lights, so you'll see that in the title if you want to go back and look for it. So when Anja Sniders and I'm probably not saying it right, because this couple's from the Netherlands, but when Anja was diagnosed, he and his wife, sasha both looked around to find resources to help them explain ALS to their young children and even though they were both school teachers and had been trained to have difficult conversations with children, they still were on a quest to find information, to find aids that would help them best explain something that's so complicated and very scary to kids. After they didn't find it, they got together with an animated production team, big Grand Productions, out of California, and now there is an 11 minute short film, an animated film called Loki and the Lights that does such an incredible job illustrating ALS. And what I love about this is they didn't stop there with the film. They actually teamed up with Global Neuro-Wide Care to make sure that anyone that was showing this film to their family, to their children, that they had additional resources and support to go along with it, and have worked really hard to make this available and accessible in different languages different languages so that no one is out there scrambling for resources to deliver this really tough news to someone they love.
Speaker 3:I cannot tell you how much this initiative means to me. You know I've had ALS for 20 years and my two sons were 11 and 13 when I was diagnosed and still I will tell you that the day we sat them down and told them that I was diagnosed with ALS and told them what that meant, that was the hardest conversation of my life, and my husband's as well. So I am all in team Lukey, so much that our I am ALS community outreach team is going to be hosting a virtual screening of the film Lukeyuki and the Lights on Tuesday, november 12th, at 7 pm Eastern Time. I will put that link in the show notes. I will also put it in my bio on Instagram at I'm Dying to Tell you podcast. So within the hour we will show the film it's only 11 minutes and then we will have all of the guests today on the call as well, so then they can answer your questions anything that you have. So I'll just be sending back and facilitating. This will be your chance to ask them about Lukey, about the film or the foundation that is creating all of the resources to help all of our children. So all right.
Speaker 3:So today I am jumping on Zoom with the director of Leaky in the Lights, toby Cochran. Also the producer, adrienne Ochoa, and the founder of Global Neuro-Wide Care, dr Melinda Kavanaugh. Absolutely brilliant what she's doing. So, okay, time to meet Team Lukey. Let's go to our chat.
Speaker 1:Hi Laurie.
Speaker 3:Hello, good to see you guys. Thank you all for joining me. I'm really really excited for this chat, so we're picking back up after a couple of years ago sitting down and talking to you all. Melinda, you weren't a part of that conversation, so I'm really happy that you're here.
Speaker 4:Yeah, I'm happy to be here.
Speaker 3:Yes, yeah, but we had the masterminds behind the project, both Anyo and Sasha, so I'm also doing this episode in memory and in honor of Anyo. So why don't we start by take us back and do a little recap of like how it all even started?
Speaker 4:Well, I think it's interesting because we have different we came in at different time points. Yeah, you know what I mean. Yeah, I I'll just say my little bit and pass it over to Toby and Adrian, who are the the actual artists and creators. I love telling this because I got an email out of the blue from Sasha I don't know how long ago now, but it was a long time ago and I had written a graphic novel for children and youth living in families with ALS and it had just been translated to Dutch.
Speaker 4:And she saw the graphic novel and sent me an email and said I have this idea, for you know the story. My husband and I are creating this. We have children. He is, you know, fairly newly diagnosed with ALS and we want something that is really accessible and kind of fun, shall we say, for children to really understand ALS. But you know, all of my clinical work and all of my research has been in, you know, really developing programs and education and materials and supports for children and youth in families with ALS. So she reached out to me and said would you be a part of this or help us in any way? And I said sure, absolutely. What do you know what can I do, like I'm in what do you need. And that was how I got involved, just kind of putting my hat into the ring and saying you know what do you need, I'll be a part of it, happy to do what I can. And so, personally, that's how I got involved with. Lukey was just answering a cold email from someone in the Netherlands.
Speaker 3:Oh my gosh. So what is your connection to the ALS space? So what is?
Speaker 4:your connection to the ALS space. Yeah, I don't have anybody in my family with ALS, Never had anybody in my family with ALS. I'm a licensed clinical social worker. I'm also a professor of social work and all of my clinical work was in neurology. So many like 25 years ago plus, I started working in neurology and working directly with families and going into homes and nursing homes and hospitals and holding hands and talking with kids and trying to figure out how to help them, how to help families, how to create a more, I suppose, holistic approach in disease management and knowledge and care, because there's just, you know, there's still so many areas that don't get included and children and youth are a huge piece of that. So I came about it from my clinical practice and training.
Speaker 3:So yeah, okay, great, all right Toby.
Speaker 5:As Melinda shared. I think, melinda, you were contacted in February of 2021. And then they contacted us, and then we said no.
Speaker 3:Oh, I didn't know that, yeah.
Speaker 5:Because I just I recommended there's so many great incentives for studios in Europe where the government helps subsidize a lot of these types of programs, and I was like, why would you want to work with American animation studio? But they enjoyed, Adrian and I, and our our kind of like creative approach, what we would do with with their idea. And then we started on Mookie in March of 2021. Actually, fun Easter egg. The clock in the opening shot says March 16th. That's the very first date that we started production in 2021. So that was a little Easter egg.
Speaker 3:Oh, nice, nice.
Speaker 5:And then we worked with Melinda the entire duration of the project, our expert medical advisor, because that was one of the you know commands, demands from from Anyo and Sasha was you know how to be medically accurate, so she was our go-to for all of that outside of just you know, picking Anyo's brain and asking. You know from firsthand experience, like for Lukey to be at home by himself and you know go through the flood of emotions that were kind of overtaking him, because that was something that was never a part of the story or script and, from what I could tell, it was really important that we needed to honor the emotions and stuff like that.
Speaker 5:And thankfully backed me up on that saying. Not only is that important, but it also helps encourage children for understanding. It's important to honor these emotions as well and display them and not kind of shy away from that For sure, that's kind of a bit of our journey. And then Melinda sat, you know, pretty much shotgun, with us on a crazy freaking roller coaster for the last three years I mean, it's really been interesting, laurie, because it, you know, I I'm not.
Speaker 4:I'm not an artist by even the remotest stretch. I'm not an animator like these. Are the guys who you know I I'm not, I'm not an artist by even the remotest stretch. I'm not an animator like these. Are the guys who you know. They're the rock stars, they're the experts, they know what they're doing. You know, yeah, I come from that clinical perspective, but it's really been. It's been a really interesting and a very um, yeah, roller coaster. It's had its ups and downs. I'm sure that you put anybody on your podcast who has made a film of any length in any, whatever makeup will tell you what a crazy roller coaster it is.
Speaker 4:But yeah, I mean, it's really, it's been interesting.
Speaker 3:Yeah, and I'm super glad you guys have stuck with it. Adrian, if I remember correctly, you have a personal ALS connection as well.
Speaker 1:Correct. Yeah, so my name is Adrian Ochoa. I was the producer of Luke and the Lights and my personal connection to ALS was that my grandfather got diagnosed with ALS in 1994. And when he first started experiencing symptoms he had trouble swallowing, he couldn't really swallow and it was his throat. So when he went in and he got diagnosed, like the whole family was like what is this? Like we're not really, you know, we've never heard of this. And within a year he passed away and again working with Melinda. You know, one thing that affected my family is that the family becomes the caretakers. I remember my aunts and my uncles and my mom, my mom especially taking care of my grandfather as he um, as he got worse, and after that, like after my grandfather passed away, then you know we were trying to be more at the more um, proactive in terms of the als community. We would always do the als walks and we would try to raise him, you know, and so so on yeah, well, I'm happy that you joined us today.
Speaker 3:Um, let's just go back real quick and, to my listeners, I will link back to our original chat a couple of years ago where sasha and anyo were able to tell their story and their motivation for this amazing idea in the first place. So you can listen to that episode after this one. But who wants to just give a quick, you know, just talk about from anyo's perspective the motivation for this film's there was quite a bit.
Speaker 4:There's a lot of motivations, I think Laurie yeah.
Speaker 5:I mean first and foremost for Sasha and Anya. It was a way for them to help explain what the heck was going on with his body to their children, because at the time, you know, to kind of help remedy this disease for them to explain to their kids, sasha designed and created this robot character with light bulbs in the joints and as the disease progressed they could kind of follow along and fill in the light bulbs one by one. As you know, anyo's wrist or elbow would kind of go out. And then, like Melinda shared, her comic book literally is the only thing years ago that was remotely accessible for families and thank goodness they were able to find it online. But for them, as Sasha and Anjo shared, they searched for years trying to find something which just led them to like, okay, we just need to create our own thing. And then the robot character kind of became an unofficial mascot of the Dutch, the Netherland ALS community and it just kind of grew in popularity from there.
Speaker 3:Oh, okay.
Speaker 4:And one of the things you know, lori, I mean like one of the things that's hard to talk to kids about and, frankly, adults is that you know ALS, you've seen what do they say? You've seen one person with ALS, you've seen one person with ALS and there's. So it's very hard to try to say, oh, this is the exact thing that happens with every person, and so just trying to be able to figure out a way to convey that in like a fun and engaging way for kids primarily but I'm sure we can talk more that quite frankly, I think more adults have gotten more out of watching Lukey quite frankly as far as, like, what's been you know, kind of responded to me but yeah, it's really it's hard to say here's what a disease is and here's what it looks like in a way that makes sense to particularly young kids, if they're still really, you know, and their children are fairly young, they're still really concrete thinkers.
Speaker 4:You know One plus one is two, like that's all there is to it, and you know something like ALS that looks weird and different and, you know, kind of complicated.
Speaker 3:Yeah, absolutely. I think when we spoke you all had sent me kind of like a rough animated storyboard kind of piece and you know I was able to tell what was going on in the whole story and at that time it was Lucas and the lights. At that time it was Lucas and the lights. So tell me about the name change. And then, what else did you change? Didn't you learn from our last conversation that was really important to put out the final product in one minute.
Speaker 4:No, I'll say one thing about the name change. The one thing I can say about the name change is we were working with a lawyer. You know the foundation existed already. We were working with a lawyer, with all the trademarks and everything, and it's quite the process and I am not the expert on that, which is why we have a lawyer doing it and they, you know, you submit all of these things and it goes through all of these checks. And it got flagged Because there is a film called Luca, which has nothing to do with ALS or robots or any of like anything.
Speaker 4:Yeah, but what our attorney was told and kind of conveyed to us is that you know another large animation studio apparently doesn't take too kindly, and the way they kind of registered their trademarks is on anything very remotely related. And so we were told that some little baby nonprofit with this brilliant film about a robot with ALS we would get obliterated. So we had to change the name.
Speaker 3:It's funny because even back when we talked a couple years ago, I started talking to my great niece, who at that time was three, using Lucas. She remembers our conversations about Lucas. She was over yesterday and I was really interested to start talking to her about it again and I was saying Lukey, and she said Lucas, and then she said he's on Disney and uh, you know, I mean, they know so much, she's five and she, and so anyway, we did the right move, gentlemen.
Speaker 3:We did the right yeah she was like pulling up on disney and I'm like, no, no, she's like what's that on what? How do I get is it on youtube, you know? I mean she wanted to know how do I go back and watch it. Anyway, I had her come in here and watch it and I really made note. Um, you know what she was engaging in. Uh, you know she's five, she's busy, she normally isn't allowed in my office, so she was looking around, you know, like and um.
Speaker 3:But I was really really touched because she saw him making the wheelchair, she saw him playing in the wheelchair and she said that's like new Auntie Lori. Now I use a walker sometimes, but she put it together that it was a device and then she said he looks like he feels a lot better when he was in the wheelchair racing. And to her, that gave her this light, an encouragement light, when Auntie Lori is using the walker. That must help her, that must make her feel a lot better. Because look what it did to luki and I'm like, oh my god, you know she didn't sit there and look at it the whole 11 minutes, but she got that out of that and I was like, okay, okay, she's fine, that was perfect and I need a little video clip of her telling me about that that I'll share.
Speaker 3:The other thing she said was what are the friends' names? She really wanted to know. She asked me later on that night what are the friends' names? And I'm thinking that maybe she wants to be one of the friends. But it was really. Does she have the coloring book, did you?
Speaker 4:give her the coloring book.
Speaker 3:Oh yeah, yay. I printed the coloring book and I was flipping through it with my sister before we watched it. I went in to ask her opinion Do you think that is too much? She said no, it'll be fine. Well then she overheard me, my niece, and she was like coloring book. And then when we were watching the movie, he was going where's the coloring book? Where's the coloring book? And so I let her take it home. She colored it. It really really answered some questions for her. She's like why do your hands look like that? Why can't you chase me Stuff like that? It was good, it was really good.
Speaker 5:That's incredible. That's that's incredible.
Speaker 4:That just means everything, lori. It just means everything that you share, that yeah.
Speaker 3:For her and just thinking that one little thing, because at five they're very, very observant and not shy and I thought, wow, that was good, and she watched it one time. She watched the film one time and that was with her dancing around in the chair and you know, asking me this and that about my office. Yeah, I was really, really impressed, so I wanted to share that Thank you. Yeah, definitely.
Speaker 5:Yeah, I was just going to share that Thank you yeah, definitely yeah. I was just going to share it. You know, it's been incredible seeing audience members and things like that from all over respond to the film, especially the ALS community, but more so children responding. As you know, that's probably one of the youngest viewers. Maybe we've been to a couple of festivals, maybe there's some five or six year olds in the audience. But like, the kids get it.
Speaker 5:You know they engage, they find different moments that they can kind of associate with, just like your niece was sharing about the wheelchair, understanding, like you know, other kids with family members you, you know, they kind of race or they play with the wheelchair and stuff like that.
Speaker 5:So they connect to certain points and, even though the ending is sad from all the kids that I've heard from or speaking with festival directors, every, every single one, even though they're sad or there may be tears in their eyes at the end, they all understand it and are able to kind of engage with the family, their parents even more so. And it's not shied away from, and that was, that was something that we were very intentional about and we had many conversations with Sasha, nanya where, and Melinda where in Europe and other places around the world. You know, talking about death is not shied away from at all, but more so, kind of in western culture, it's like, oh, we don't really go there, don't, don't talk about that, or or don't show a character you know passing away on screen or you know cut away and that, that sort of thing. You know, and that was something that we wanted to be intentional about showing and and just like, hey, this is a is a part of life and a part of this terrible disease.
Speaker 3:Yeah, I don't know that. I let you fully answer my question on things that you saw that you needed to change over the last couple of years. Did you have any more to that?
Speaker 5:Well, since and God bless you for watching an animatic, because I know that's probably difficult to to watch and understand um, I mean, we pitch that thing around to a lot of foundations and even even the als association. And you know, for people that don't kind of understand how animation is made, everything's drawn first with like a kind of a storybook look, or what we call storyboards, and it's cut together and timed together, but it's all black and white.
Speaker 1:You know, it's actually kind of cool though yeah, frankly yeah, the animatics are awesome, yeah yeah, even early on, like we had to really like walk sasha and anya through the process. You know, it's like these are just drawings and then we're gonna go into layout and the characters are gonna look very static, and we had to kind of walk them through that process as well, because if you're not used to seeing the production pipeline, it's very charming. What am I looking at?
Speaker 5:and you know, some people don't there's. I mean, there was all kinds of stuff that we ended up changing or kind of modifying, since you probably saw the animatic a couple years ago, just from from a story perspective.
Speaker 5:For me, as I was developing it and the more I got to learn about anyo, the more I was trying to infuse luki with the kind of personality and character traits of anyo and and you know it's a little cliche, like when, when people, directors and things like that share, like usually, the characters or the story needs to tell you what it needs to say.
Speaker 5:And I kept finding myself in that position of Lukey was really wanting to say certain things and I needed to kind of explore what those were, one being the moment when he got home that evening after like a full day of testing at the doctor's office. Another being, you know know, the inspiration for luki to make his own wheelchair was directly influenced by learning. Anyo was this kind of this dyi, you know, craftsman, made stuff around his house like his, his table and bookshelves and, yeah, love dungeons and dragons and painting, all this kind of stuff. So that was, like you know, that kind of artistic and also just hands-on approach was like okay, this is very much who Lukey is as well, and just looking for moments and those kinds of slices of authenticity and honesty to just like kind of plug in and then trying to stitch it all together. Oh, I love that. Yeah, that's really good authenticity and honesty to just like kind of plug in and then trying to stitch it all together oh, I love that.
Speaker 3:Yeah, that's really good and for your niece.
Speaker 5:Uh, the friend's name's the big yellow guy's, theo, and the purple one is nifa. Uh, theo is actually the voice of anyo, so anyo's been immortalized in the film forever and we were able to capture his voice. So a lot of people don't know that Anyo was the voice of the big yellow guy, the friend.
Speaker 3:Oh, that's great. Okay, perfect. Yeah, I wondered about some of the things and then like the roll the dice sticker, you know, is there any meaning behind that?
Speaker 4:Oh, yeah, yeah there any meaning behind that, or? Oh, yeah, yeah yeah, there's meaning behind everything. They did such a great job, lori there's meaning behind everything, absolutely I mean.
Speaker 1:That's why, luke, he lived in a windmill, because he knows as a certain another means but you know, you know it was actually.
Speaker 4:It was interesting and there were, you know, there were many conversations, some of which I deeply involved in trying to understand. And this is an interesting thing, laurie, like because it was created to be a global film, right, so there's no language to global audiences, like getting it out there, like here, als group, in whatever country this is, watch this film with me, see what you think, and so it really resonates. But it was interesting making it. You realize how different countries approach things very differently, and particularly healthcare.
Speaker 4:So one of the early kind of setups and structures had a nurse in the home, kind of taking care of Lukey and doing all of this stuff, and one of you know my first comments was like that's not going to resonate, certainly not in the US, you know, you don't just automatic, you know, and they were like well, in the Netherlands you automatically get this, and I said well, in the US you don't, and lots of other places around the world you might barely have family or friends. So it was really interesting to kind of work across country culture, kind of perspective, context, to really put something together that had such reach, but yet at the same time, like what Adrian was saying. I mean, he lived in a windmill, so it was Dutch, but it wasn't fully Dutch, you know. So that's, I think that was a really wonderful way it came about, because it does, it really does resonate on that global level. Because of that, because it doesn't kind of make you immediately go wait who what you know, because friends and family take care of people.
Speaker 3:Right, right, right, yeah, and I can see how challenging that has made the whole project. You know, keeping that in mind, that you're wanting to reach so many people you know in in different aspects. So tell me about this past year. You guys have been taking the film to festivals and, you know, really trying to get it out there. So tell me how that experience has been.
Speaker 5:It's been absolutely wild. Um again, just on another, a new roller coaster with with. So we last year probably october I think, of 23 we had kind of made this awesome plan with sasha nanyo to have them come to america and we do a screening in in March in New York so that they could see the Big Apple and you know, bringing their kids and all that kind of stuff. But Anyo, you know, he started, he just started getting really, really bad with the.
Speaker 5:Yeah, he progressed pretty quickly, yeah, he progressed very quickly from like October to December and then even January to February, and that kind of changed our approach where we kind of we wanted to focus a little bit more on specific festivals Academy qualifying festivals but we kind of did a shotgun approach at that point, just trying to get the film into as many festivals as possible so hopefully Sasha and Anyo could experience what it would be like to go and see it with an audience. So we entered a lot in Europe and things like that. But fortunately, you know, before he passed, they were able to have a friends and family screening in the Netherlands and then I think it was like two weeks later we we still had the screening in New York.
Speaker 4:yeah, in in New York, yeah but we, yeah, but we also did.
Speaker 4:You know we did in Switzerland last year for the big international ALS and motor neuron disease meeting. You know we had a a kind of fancy film screening, if you will, there and we had a little red carpet, we had like signs, we had stickers, we had everything and Anyo and Sasha and the girls were both there and it was. It was really.
Speaker 4:I think it's spectacular the way Lukey is moving through the world, kind of in a, in a dual capacity, if you will, one like just that, that festival reach, where most people don't have a lot of personal connections, and it's, you know, kind of getting out there in that way. But then also this, this really cool reach within ALS and motor neuron disease community and, and you know it started with that kind of premier, if you will, at the international. And from then I personally and other organizations have been a part of just you know showing, doing leaky showings throughout the ALS community around the world. You know different countries are doing different showings and you know hosting different things. So I think it's you know Anyo, before he died, knew that that's where it was going.
Speaker 3:That you know that Lukey was in festivals and we were in.
Speaker 4:New York doing our world premiere, but then also the ALS world was really being exposed to it as well, and I think that's what's been so spectacular about this team is that we've really approached it on all sides, you know.
Speaker 3:I love that, I love that and that makes my heart so happy, like knowing that he was able to experience that. Tell me some of the feedback that you received at these screenings or festivals and specifically, maybe things that you didn't expect or you know that were great learnings from that.
Speaker 1:For me it's the amount of people that have been personally affected by ALS. It's very surprising because, again, going back to my grandfather, it was a disease that we didn't really know nothing about me personally and it's also a lot of people don't know about it. You know, some people know it as Lou Gehrig's disease and you know there's that aspect of it. They're like oh yeah, I've heard of it. You know, they know about the ice bucket challenge, but a lot of people aren't very informed about what ALS is. I remember, even when we were making the film, someone told me you should have chosen a different disease that people know about. Like, oh, I should have done a cancer film or an AIDS film.
Speaker 4:It's like no one knows about this film because but through the process, it's so surprising to know how many people have actually been affected and it's more common than we think.
Speaker 4:Yeah, Interesting. You know I've shown it personally to a lot of ALS organizations, either in person and showed the film and, you know, talked about it afterward or on webinars. And it has struck me in different countries, people who work in the ALS and motor neuron disease space are so taken aback at and this will be my word the ease with which we're able to tell the story of ALS and, as practitioners, people who've been working in the field for sometimes many, many, many years they say, ah, okay, like I have struggled to talk about how to explain this to adults, much less children, which they aren't. So we're so grateful that Lukey is out there to help with that process, but that they see it and it makes it just easier to access and easier to explain. And I've had many, many clinics around the world say we're going to use this for our adults as well, like, yeah, you made it for kids, that's great, good for you. We're using it for adults, perfect.
Speaker 3:Do what you need to do. Yeah, I was going gonna ask about that and then also like one of the things that I learned in the our first chat was that the film was also intended to for kids that are affected by als to be able to tell their friends about ALS, which I think is a whole other level for kids to talk about ALS to other kids that don't know anything about it. So are you learning that that's been really successful as well?
Speaker 4:So I don't mean to talk too much, I'll say this quickly. But I do a program called Y-Care which is a caregiving skill education, training, support program for kids who provide care to a family member across neurological disorders, including ALS. And I have shown when we've done Y-Care, I'll show Lukey in the lights, and I have shown when we've done Luke. When we've done Y care, I'll show Lukey in the lights. And after this combination of like sitting all day and talking about what this disease is and how do we help care for it, then they watch this movie.
Speaker 4:You see that like defenses go down. You see kids interest in sharing more as opposed to just kind of saying, yeah, my dad or grandma has this, and then moving on. But it's almost like we're giving them more tools to be communicative with their peers and and I personally seen that the kids are like, okay, yeah, I'm gonna share it. Can we show this to my friends? Can we, you know, have that link and show it at my school and whatever, and it it gives them more I want to say ammunition in a positive way for talking about and kind of creating a more supportive environment around them.
Speaker 3:Awesome and you mentioned I don't know what I want to say it right, do I say oh, I know, is it Global Neuro Y Care, right on. It is yeah, that's because I'm at the website. I'm at the website and I just wanted to talk about the website.
Speaker 4:So yeah, so if you direct everybody to Global Neuro Y Care, not only is there a tab for the Lukey, they can watch the full film, there's all the educational materials, there's the coloring book, free of charge, and then there's a tab where they can get any of the other resources for kids and families in ALS, including the graphic novel which was just translated into its 12th language, and it's all free of charge. Like they just download it all good, free, take it however many times they want, print it, send it to anybody they want. Yeah.
Speaker 3:Yeah, okay, and I'm on the website right now and this is where I got the coloring book for my great niece.
Speaker 3:And then I printed it out. This is also where I went to watch the movie and it's really simple. There is no charge. You put in your first and your last name and your email and then you're able to watch the movie. And, like you said, there's other resources here caregiving videos, and I will put a link in the show notes on my website and Facebook page, both at I'm Dying to Tell you podcast, but again, it's globalneurowhyecareorg.
Speaker 4:Thank you, lori. No, that's awesome. We're, we're really excited.
Speaker 3:Okay, so that's the best way to watch it. And then, what can we do to help spread this film? To talk about Lukey to you know how, like my friend Shirley, she's up here on my wall, shirley Schmelze. She was the one that designed the sunflower and made the sunflower be a symbol for ALS in the United States, and I was a part of that little focus group many years ago, and now you'll see that sunflower as a symbol of ALS. How do we help bring Lukey as a symbol to kids affected by ALS?
Speaker 4:Well, I'll just jump in really quick and say, as a global nonprofit, our goal is to create as many materials as possible that are accessible to as many children as possible, meaning things that get to be translated across multiple languages, things without language. So, frankly, we need as many donations as possible to continue spreading Lukey and all of Lukey's materials around the world, and there are several places on the global neuro white care page that people can donate, and any amount is, you know, obviously incredibly grateful. Yeah, yeah. So, first and foremost, yeah, helping us continue to do the work. Okay.
Speaker 3:Tell me. I feel like you have something to say.
Speaker 5:Sure, yeah, okay, tommy, I feel like you have something to say. Sure, yeah, yeah, please go to globalneurowhikeyorg and help us get Lukey's message out into the world. And I'll also add you know, one of the demands and kind of crazy requests from audio is that this film be Oscar worthy. And you know, three years ago I was like I kind of dismissed that. I was like, look, we got to make a good film first. I don't know anybody that just goes off and kind of you know, sets their focus on doing that first and foremost. Well, you had asked about the festival circuit and it being a wild, wild year for us. We have been privileged to screen in 15 Oscar qualifying film festivals. We're in over 75 festivals around the world. We've won at 24 festivals, many of which the wins come from the audience, which is absolutely incredible. And because of that we have now Lukey has qualified to be considered for the Oscars. So Lukey is sitting on the Oscar portal right now and will be part of the voting process in December. So we are going to honor Anya's crazy last request of trying to get Lukey on the big red carpet stage, because we would love to not only honor that idea but to get there and to use that as a platform to help spread the awareness around ALS Global Neuro-Wide Care, the ALS Association.
Speaker 5:In my kind of biased perspective, you know what's really been going on in the ALS community over the last 10 years. We had the Ice Buck bucket challenge. When I share that with people they're very surprised that it was 10 years ago. There's been a lot of great kind of progress with some pharmaceutical drug advancements and things like that. And now, for the first time ever, with Global Neuro-Y Care's support, there's something for children and families. Neuroycare's support there's something for children and families. So we want to take it all the way and do as much as we can with it possibly, and getting to the Oscars is just kind of the beginning of what would be possible. So again, any support to Global NeuroYcare would help with that and the additional educational materials that Melinda's got in her. You know master plan for beyond. You know just that.
Speaker 3:Yeah, yeah. What call to action is most important for the listeners that want to help get Lukey on the red carpet? What specifically can we do?
Speaker 5:For any of your listeners to help us get Lukey onto the red carpet for the Oscars, as we're campaigning for all of that. Yeah, having them share, reshare go to globalneurowhitecareorg. They could watch the film and we would love for people to just share what they experienced from watching it, a little quote that we can reshare on our social media. People can also go to Letterboxd it's an app or a website letterboxdcom and leave a little review and also do that on IMDb. All of that sort of stuff helps us and it helps build momentum about just kind of getting it to the masses and spreading it outside of, you know, just the ALS community, because we want to let voting members of the Oscar, the academies, know that Lukey is coming, lukey's here to stay and we're going to go all the way and do our best. So we would love all the support we can get.
Speaker 3:Okay, great.
Speaker 1:Add to that too, even like Rotten Tomatoes, if you can, because there's a lot of audience members that can leave reviews on Rotten Tomatoes. So that's another venue that people can leave comments.
Speaker 3:On Rotten Tomatoes, okay, and I'll put some links in the show notes so that listeners can grab a direct link there as well. Okay, great, okay.
Speaker 5:So Globinar Y Care, go to their Instagram, help reshare the stuff that Melinda and her team is sharing and posting. It's not just Lukey, it's also additional work that they're doing. And then Big Rin, our Big Rin Productions social media. We're focusing on the film from the festival perspective, but with those two social medias your listeners and everybody can get more than enough information on, you know, keeping track of what's going on.
Speaker 3:Okay, awesome. My great niece wanted to know if you're going to make another one.
Speaker 5:A sequel.
Speaker 3:Yeah.
Speaker 5:Or a prequel, yeah, or a prequel you can do, a prequel yeah.
Speaker 3:I can't really do it.
Speaker 5:Does she want to be a voice in the next one?
Speaker 3:Yeah, okay, yeah, she has quite the voice. She has the voice, that's for sure. Oh my gosh, after she left last night, I did not move Five is.
Speaker 4:I did not move five. Yeah, it's a really good age.
Speaker 3:really good age, um, okay, so, since I ask at the end of every episode, money and dynatel is, why don't we, from Lukey's perspective, if he was able to use his robot voice? So, lukey, what are you dying to tell us? And any of you can jump in and answer.
Speaker 4:I'm dying to tell you that it's okay to talk about ALS with everybody you know.
Speaker 1:Yeah it's okay.
Speaker 3:Yeah, I'm dying to tell you that I am so happy that I can finally share my story with the world. Yeah, I love that.
Speaker 5:And I'm dying to tell you that every single one of us has a story to share, and when we can shine a light on our story, we can help make an impact around the world and on others.
Speaker 3:Absolutely yeah, which is the reason I do this podcast because everyone has a story and every voice matters, whether you're using a speech generating device or if you're a robot. Every voice matters to help bring awareness to ALS, to help bring comfort and understanding to kids, to teens, to even adults about a disease that is so complicated and so devastating. I just cannot thank you all enough, so I appreciate you all.
Speaker 5:Thank you, lori, it's an honor to be here. Thank you, Lori.
Speaker 4:It's an honor to be here. Thank you, Lori.
Speaker 1:It's nice to meet you again.
Speaker 3:Yeah, everyone, keep in touch and thank you again. Thanks again, team Lukey. I appreciate all of you so much. Life is so incredibly hard and then you get something like ALS or cancer or any life altering disease that impacts the entire family, and sometimes the toughest part is thinking about the impact that the disease or the new situation will have on your child. I know that's the way it was with me and my children. Even though they are 32 and almost 34 now, it still is that way.
Speaker 3:So I love what this team has done and continues to do and I really would love it if you would join me and Toby and Adrian and Melinda all on the virtual screening of Leaky and the Lights and again, it's hosted by I Am ALS and it's going to be on Tuesday, november 12th, at 7pm Eastern Time. I'll be putting information up and I'm sure I am ALS will as well on all of their social media and mine at I'm Dying to Tell you podcast. And yeah, if you're new here, you can find me pretty much everywhere on Facebook, twitter, instagram, linkedin and even TikTok, all at I'm Dying to Tell you Podcast. Thank you so much for being here. I really appreciate you. Okay, until next time. Know you are loved and not alone. Thanks for listening.
Speaker 2:Thank you for listening.