October 30, 2024 • 53 mins
"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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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:09):
Hey, I'm Paul.
Speaker 1 (00:10):
And I'm Christian.
Speaker 2 (00:11):
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
the first day we laid eyes onher the queen of the queen city,
(00:32):
our mom, your host, lori.
Speaker 3 (00:49):
Hello, I'm Lori, your host of.
I'm Dying to Tell you Thank youfor being here.
(01:17):
Unique, where the focus of ourchat is about Lukey.
Lukey, lukey, my only robotfriend, the only robot that has
been diagnosed with ALS.
Lukey is the star of a film, ashort animated film, that was
born out of love and necessityto help tell children about ALS.
(01:42):
If you've been listening for awhile, I actually spoke to the
creators of Lukey and the Lights, which is the name of the film
a young couple who had ALS comeinto their life and needed a way
to tell their young children.
(02:02):
So if you go back to 2022,you'll find the episode, and at
that time the film was going tobe called Luca and the Lights,
so you'll see that in the titleif you want to go back and look
for it.
So when Anja Sniders and I'mprobably not saying it right,
(02:26):
because this couple's from theNetherlands, but when Anja was
diagnosed, he and his wife,sasha both looked around to find
resources to help them explainALS to their young children and
even though they were bothschool teachers and had been
(02:49):
trained to have difficultconversations with children,
they still were on a quest tofind information, to find aids
that would help them bestexplain something that's so
complicated and very scary tokids.
(03:12):
After they didn't find it, theygot together with an animated
production team, big GrandProductions, out of California,
and now there is an 11 minuteshort film, an animated film
(03:33):
called Loki and the Lights thatdoes such an incredible job
illustrating ALS.
And what I love about this isthey didn't stop there with the
film.
They actually teamed up withGlobal Neuro-Wide Care to make
(03:54):
sure that anyone that wasshowing this film to their
family, to their children, thatthey had additional resources
and support to go along with it,and have worked really hard to
(04:14):
make this available andaccessible in different
languages different languages sothat no one is out there
scrambling for resources todeliver this really tough news
(04:35):
to someone they love.
I cannot tell you how much thisinitiative means to me.
You know I've had ALS for 20years and my two sons were 11
and 13 when I was diagnosed andstill I will tell you that the
(04:57):
day we sat them down and toldthem that I was diagnosed with
ALS and told them what thatmeant, that was the hardest
conversation of my life, and myhusband's as well.
(05:21):
So I am all in team Lukey, somuch that our I am ALS community
outreach team is going to behosting a virtual screening of
(05:41):
the film Lukeyuki and the Lightson Tuesday, november 12th, at 7
pm Eastern Time.
I will put that link in theshow notes.
I will also put it in my bio onInstagram at I'm Dying to Tell
you podcast.
(06:03):
So within the hour we will showthe film it's only 11 minutes
and then we will have all of theguests today on the call as
well, so then they can answeryour questions anything that you
have.
So I'll just be sending backand facilitating.
(06:28):
This will be your chance to askthem about Lukey, about the
film or the foundation that iscreating all of the resources to
help all of our children.
So all right.
So today I am jumping on Zoomwith the director of Leaky in
(06:51):
the Lights, toby Cochran.
Also the producer, adrienneOchoa, and the founder of Global
Neuro-Wide Care, dr MelindaKavanaugh.
Absolutely brilliant what she'sdoing.
So, okay, time to meet TeamLukey.
(07:15):
Let's go to our chat.
Speaker 1 (07:19):
Hi Laurie.
Speaker 3 (07:23):
Hello, good to see you guys.
Thank you all for joining me.
I'm really really excited forthis chat, so we're picking back
up after a couple of years agositting down and talking to you
all.
Melinda, you weren't a part ofthat conversation, so I'm really
(07:43):
happy that you're here.
Speaker 4 (07:45):
Yeah, I'm happy to be here.
Speaker 3 (07:47):
Yes, yeah, but we had the masterminds behind the
project, both Anyo and Sasha, soI'm also doing this episode in
memory and in honor of Anyo.
So why don't we start by takeus back and do a little recap of
(08:12):
like how it all even started?
Speaker 4 (08:17):
Well, I think it's interesting because we have
different we came in atdifferent time points.
Yeah, you know what I mean.
Yeah, I I'll just say my littlebit and pass it over to Toby
and Adrian, who are the theactual artists and creators.
I love telling this because Igot an email out of the blue
from Sasha I don't know how longago now, but it was a long time
(08:41):
ago and I had written a graphicnovel for children and youth
living in families with ALS andit had just been translated to
Dutch.
And she saw the graphic noveland sent me an email and said I
have this idea, for you know thestory.
My husband and I are creatingthis.
(09:01):
We have children.
He is, you know, fairly newlydiagnosed with ALS and we want
something that is reallyaccessible and kind of fun,
shall we say, for children toreally understand ALS.
But you know, all of myclinical work and all of my
research has been in, you know,really developing programs and
(09:23):
education and materials andsupports for children and youth
in families with ALS.
So she reached out to me andsaid 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
(09:45):
into the ring and saying youknow what do you need, I'll be a
part of it, happy to do what Ican.
And so, personally, that's howI got involved with.
Lukey was just answering a coldemail from someone in the
Netherlands.
Speaker 3 (09:59):
Oh my gosh.
So what is your connection tothe ALS space?
So what is?
Speaker 4 (10:05):
your connection to the ALS space.
Yeah, I don't have anybody inmy family with ALS, Never had
anybody in my family with ALS.
I'm a licensed clinical socialworker.
I'm also a professor of socialwork and all of my clinical work
was in neurology.
So many like 25 years ago plus,I started working in neurology
(10:28):
and working directly withfamilies and going into homes
and nursing homes and hospitalsand holding hands and talking
with kids and trying to figureout how to help them, how to
help families, how to create amore, I suppose, holistic
approach in disease managementand knowledge and care, because
(10:48):
there's just, you know, there'sstill so many areas that don't
get included and children andyouth are a huge piece of that.
So I came about it from myclinical practice and training.
Speaker 3 (11:02):
So yeah, okay, great, all right Toby.
Speaker 5 (11:05):
As Melinda shared.
I think, melinda, you werecontacted in February of 2021.
And then they contacted us, andthen we said no.
Speaker 3 (11:15):
Oh, I didn't know that, yeah.
Speaker 5 (11:17):
Because I just I recommended there's so many
great incentives for studios inEurope where the government
helps subsidize a lot of thesetypes of programs, and I was
like, why would you want to workwith American animation studio?
But they enjoyed, Adrian and I,and our our kind of like
creative approach, what we woulddo with with their idea.
(11:39):
And then we started on Mookiein March of 2021.
Actually, fun Easter egg.
The clock in the opening shotsays March 16th.
That's the very first date thatwe started production in 2021.
So that was a little Easter egg.
Speaker 3 (11:59):
Oh, nice, nice.
Speaker 5 (12:01):
And then we worked with Melinda the entire duration
of the project, our expertmedical advisor, because that
was one of the you know commands, demands from from Anyo and
Sasha was you know how to bemedically accurate, so she was
(12:45):
our go-to for all of thatoutside of just you know,
picking Anyo's brain and asking.
You know from firsthandexperience, like for Lukey to be
at home by himself and you knowgo through the flood of
emotions that were kind ofovertaking him, because that was
something that was never a partof the story or script and,
from what I could tell, it wasreally important that we needed
to honor the emotions and stufflike that.
And thankfully backed me up onthat saying.
(13:07):
Not only is that important, butit also helps encourage
children for understanding.
It's important to honor theseemotions as well and display
them and not kind of shy awayfrom that For sure, that's kind
of a bit of our journey.
And then Melinda sat, you know,pretty much shotgun, with us on
(13:29):
a crazy freaking roller coasterfor the last three years I mean
, it's really been interesting,laurie, because it, you know, I
I'm not.
Speaker 4 (13:41):
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'mnot, 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'rethe experts, they know what
they're doing.
You know, yeah, I come fromthat clinical perspective, but
it's really been.
It's been a really interestingand a very um, yeah, roller
coaster.
It's had its ups and downs.
I'm sure that you put anybodyon your podcast who has made a
(14:03):
film of any length in any,whatever makeup will tell you
what a crazy roller coaster itis.
But yeah, I mean, it's really,it's been interesting.
Speaker 3 (14:16):
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 (14:26):
Correct.
Yeah, so my name is AdrianOchoa.
I was the producer of Luke andthe Lights and my personal
connection to ALS was that mygrandfather got diagnosed with
ALS in 1994.
And when he first startedexperiencing symptoms he had
trouble swallowing, he couldn'treally swallow and it was his
throat.
So when he went in and he gotdiagnosed, like the whole family
(14:46):
was like what is this?
Like we're not really, you know, we've never heard of this.
And within a year he passedaway and again working with
Melinda.
You know, one thing thataffected my family is that the
family becomes the caretakers.
I remember my aunts and myuncles and my mom, my mom
especially taking care of mygrandfather as he um, as he got
(15:08):
worse, and after that, likeafter my grandfather passed away
, then you know we were tryingto be more at the more um,
proactive in terms of the alscommunity.
We would always do the alswalks 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 (15:25):
Um, let's just go back real quick and, to my
listeners, I will link back toour original chat a couple of
years ago where sasha and anyowere able to tell their story
and their motivation for thisamazing idea in the first place.
(15:47):
So you can listen to thatepisode after this one.
But who wants to just give aquick, you know, just talk about
from anyo's perspective themotivation for this film's there
was quite a bit.
Speaker 4 (16:07):
There's a lot of motivations, I think Laurie yeah
.
Speaker 5 (16:10):
I mean first and foremost for Sasha and Anya.
It was a way for them to helpexplain what the heck was going
on with his body to theirchildren, because at the time,
you know, to kind of help remedythis disease for them to
explain to their kids, sashadesigned and created this robot
character with light bulbs inthe joints and as the disease
(16:30):
progressed they could kind offollow along and fill in the
light bulbs one by one.
As you know, anyo's wrist orelbow would kind of go out.
And then, like Melinda shared,her comic book literally is the
only thing years ago that wasremotely accessible for families
and thank goodness they wereable to find it online.
(16:51):
But for them, as Sasha and Anjoshared, they searched for years
trying to find something whichjust led them to like, okay, we
just need to create our ownthing.
And then the robot characterkind of became an unofficial
mascot of the Dutch, theNetherland ALS community and it
just kind of grew in popularityfrom there.
Speaker 3 (17:14):
Oh, okay.
Speaker 4 (17:14):
And one of the things you know, lori, I mean like one
of the things that's hard totalk 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
(17:35):
that happens with every person,and so just trying to be able to
figure out a way to convey thatin like a fun and engaging way
for kids primarily but I'm surewe can talk more that quite
frankly, I think more adultshave gotten more out of watching
Lukey quite frankly as far as,like, what's been you know, kind
(17:58):
of responded to me but yeah,it's really it's hard to say
here's what a disease is andhere's what it looks like in a
way that makes sense toparticularly young kids, if
they're still really, you know,and their children are fairly
young, they're still reallyconcrete thinkers.
You know One plus one is two,like that's all there is to it,
and you know something like ALSthat looks weird and different
(18:18):
and, you know, kind ofcomplicated.
Speaker 3 (18:22):
Yeah, absolutely.
I think when we spoke you allhad sent me kind of like a rough
animated storyboard kind ofpiece and you know I was able to
tell what was going on in thewhole story and at that time it
was Lucas and the lights.
(18:42):
At that time it was Lucas andthe lights.
So tell me about the namechange.
And then, what else did youchange?
Didn't you learn from our lastconversation that was really
important to put out the finalproduct in one minute.
Speaker 4 (19:01):
No, I'll say one thing about the name change.
The one thing I can say aboutthe name change is we were
working with a lawyer.
You know the foundation existedalready.
We were working with a lawyer,with all the trademarks and
everything, and it's quite theprocess and I am not the expert
on that, which is why we have alawyer doing it and they, you
(19:22):
know, you submit all of thesethings and it goes through all
of these checks.
And it got flagged Becausethere is a film called Luca,
which has nothing to do with ALSor robots or any of like
anything.
Yeah, but what our attorney wastold and kind of conveyed to us
(19:45):
is that you know another largeanimation studio apparently
doesn't take too kindly, and theway they kind of registered
their trademarks is on anythingvery remotely related.
And so we were told that somelittle baby nonprofit with this
brilliant film about a robotwith ALS we would get
(20:08):
obliterated.
So we had to change the name.
Speaker 3 (20:11):
It's funny because even back when we talked a
couple years ago, I startedtalking to my great niece, who
at that time was three, usingLucas.
She remembers our conversationsabout Lucas.
She was over yesterday and Iwas really interested to start
(20:36):
talking to her about it againand I was saying Lukey, and she
said Lucas, and then she saidhe'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.
We did the right yeah she waslike pulling up on disney and
(20:58):
I'm like, no, no, she's likewhat's that on what?
How do I get is it on youtube,you know?
I mean she wanted to know howdo I go back and watch it.
Anyway, I had her come in hereand watch it and I really made
note.
Um, you know what she wasengaging in.
Uh, you know she's five, she'sbusy, she normally isn't allowed
(21:19):
in my office, so she waslooking around, you know, like
and um.
But I was really really touchedbecause she saw him making the
wheelchair, she saw him playingin the wheelchair and she said
that's like new Auntie Lori.
(21:40):
Now I use a walker sometimes,but she put it together that it
was a device and then she saidhe looks like he feels a lot
better when he was in thewheelchair racing.
And to her, that gave her thislight, an encouragement light,
(22:05):
when Auntie Lori is using thewalker.
That must help her, that mustmake her feel a lot better.
Because look what it did toluki and I'm like, oh my god,
you know she didn't sit thereand look at it the whole 11
(22:26):
minutes, but she got that out ofthat and I was like, okay, okay
, she's fine, that was perfectand I need a little video clip
of her telling me about thatthat I'll share.
The other thing she said waswhat are the friends' names?
She really wanted to know.
She asked me later on thatnight what are the friends'
(22:49):
names?
And I'm thinking that maybe shewants to be one of the friends.
But it was really.
Does she have the coloring book, did you?
Speaker 4 (22:59):
give her the coloring book.
Speaker 3 (23:00):
Oh yeah, yay.
I printed the coloring book andI was flipping through it with
my sister before we watched it.
I went in to ask her opinion Doyou think that is too much?
She said no, it'll be fine.
Well then she overheard me, myniece, and she was like coloring
(23:22):
book.
And then when we were watchingthe 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 somequestions for her.
She's like why do your handslook like that?
(23:45):
Why can't you chase me Stufflike that?
It was good, it was really good.
Speaker 5 (23:53):
That's incredible.
That's that's incredible.
Speaker 4 (23:55):
That just means everything, lori.
It just means everything thatyou share, that yeah.
Speaker 3 (24:00):
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 timeand that was with her dancing
(24:21):
around in the chair and you know, asking me this and that about
my office.
Yeah, I was really, reallyimpressed, so I wanted to share
that Thank you.
Yeah, definitely.
Speaker 5 (24:33):
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 incredibleseeing audience members and
things like that from all overrespond to the film, especially
the ALS community, but more sochildren responding.
As you know, that's probablyone of the youngest viewers.
Maybe we've been to a couple offestivals, maybe there's some
(24:54):
five or six year olds in theaudience.
But like, the kids get it.
You know they engage, they finddifferent moments that they can
kind of associate with, justlike your niece was sharing
about the wheelchair,understanding, like you know,
other kids with family membersyou, you know, they kind of race
or they play with thewheelchair and stuff like that.
(25:15):
So they connect to certainpoints and, even though the
ending is sad from all the kidsthat I've heard from or speaking
with festival directors, every,every single one, even though
they're sad or there may betears in their eyes at the end,
they all understand it and areable to kind of engage with the
family, their parents even moreso.
(25:37):
And it's not shied away from,and that was, that was something
that we were very intentionalabout and we had many
conversations with Sasha, nanyawhere, and Melinda where in
Europe and other places aroundthe world.
You know, talking about deathis not shied away from at all,
but more so, kind of in westernculture, it's like, oh, we don't
(25:58):
really go there, don't, don'ttalk about that, or or don't
show a character you knowpassing away on screen or you
know cut away and that, thatsort of thing.
You know, and that wassomething that we wanted to be
intentional about showing andand just like, hey, this is a is
a part of life and a part ofthis terrible disease.
Speaker 3 (26:16):
Yeah, I don't know that.
I let you fully answer myquestion on things that you saw
that you needed to change overthe last couple of years.
Did you have any more to that?
Speaker 5 (26:31):
Well, since and God bless you for watching an
animatic, because I know that'sprobably difficult to to watch
and understand um, I mean, wepitch that thing around to a lot
of foundations and even eventhe als association.
And you know, for people thatdon't kind of understand how
animation is made, everything'sdrawn first with like a kind of
(26:52):
a storybook look, or what wecall storyboards, and it's cut
together and timed together, butit's all black and white.
Speaker 1 (26:58):
You know, it's actually kind of cool though
yeah, frankly yeah, theanimatics are awesome, yeah yeah
, even early on, like we had toreally like walk sasha and anya
through the process.
You know, it's like these arejust drawings and then we're
gonna go into layout and thecharacters are gonna look very
static, and we had to kind ofwalk them through that process
as well, because if you're notused to seeing the production
pipeline, it's very charming.
(27:19):
What am I looking at?
Speaker 5 (27:20):
and you know, some people don't there's.
I mean, there was all kinds ofstuff that we ended up changing
or kind of modifying, since youprobably saw the animatic a
couple years ago, just from froma story perspective.
For me, as I was developing itand the more I got to learn
about anyo, the more I wastrying to infuse luki with the
(27:42):
kind of personality andcharacter traits of anyo and and
you know it's a little cliche,like when, when people,
directors and things like thatshare, like usually, the
characters or the story needs totell you what it needs to say.
And I kept finding myself inthat position of Lukey was
really wanting to say certainthings and I needed to kind of
(28:02):
explore what those were, onebeing the moment when he got
home that evening after like afull day of testing at the
doctor's office.
Another being, you know know,the inspiration for luki to make
his own wheelchair was directlyinfluenced by learning.
Anyo was this kind of this dyi,you know, craftsman, made stuff
(28:27):
around his house like his, histable and bookshelves and, yeah,
love dungeons and dragons andpainting, all this kind of stuff
.
So that was, like you know,that kind of artistic and also
just hands-on approach was likeokay, this is very much who
Lukey is as well, and justlooking for moments and those
kinds of slices of authenticityand honesty to just like kind of
(28:50):
plug in and then trying tostitch it all together.
Oh, I love that.
Yeah, that's really goodauthenticity and honesty to just
like kind of plug in and thentrying to stitch it all together
oh, I love that.
Speaker 3 (28:56):
Yeah, that's really good and for your niece.
Speaker 5 (29:00):
Uh, the friend's name's the big yellow guy's,
theo, and the purple one is nifa.
Uh, theo is actually the voiceof anyo, so anyo's been
immortalized in the film foreverand we were able to capture his
voice.
So a lot of people don't knowthat Anyo was the voice of the
big yellow guy, the friend.
Speaker 3 (29:20):
Oh, that's great.
Okay, perfect.
Yeah, I wondered about some ofthe things and then like the
roll the dice sticker, you know,is there any meaning behind
that?
Speaker 4 (29:33):
Oh, yeah, yeah there any meaning behind that, or?
Oh, yeah, yeah yeah, there'smeaning behind everything.
They did such a great job, lorithere's meaning behind
everything, absolutely I mean.
Speaker 1 (29:42):
That's why, luke, he lived in a windmill, because he
knows as a certain another meansbut you know, you know it was
actually.
Speaker 4 (29:50):
It was interesting and there were, you know, there
were many conversations, some ofwhich I deeply involved in
trying to understand.
And this is an interestingthing, laurie, like because it
was created to be a global film,right, so there's no language
to global audiences, likegetting it out there, like here,
(30:11):
als group, in whatever countrythis is, watch this film with me
, see what you think, and so itreally resonates.
But it was interesting makingit.
You realize how differentcountries approach things very
differently, and particularlyhealthcare.
So one of the early kind ofsetups and structures had a
(30:34):
nurse in the home, kind oftaking care of Lukey and doing
all of this stuff, and one ofyou know my first comments was
like that's not going toresonate, certainly not in the
US, you know, you don't justautomatic, you know, and they
were like well, in theNetherlands you automatically
get this, and I said well, inthe US you don't, and lots of
(30:56):
other places around the worldyou might barely have family or
friends.
So it was really interesting tokind 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.
(31:16):
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 areally wonderful way it came
about, because it does, itreally does resonate on that
global level.
Because of that, because itdoesn't kind of make you
immediately go wait who what youknow, because friends and
(31:39):
family take care of people.
Speaker 3 (31:41):
Right, right, right, yeah, and I can see how
challenging that has made thewhole project.
You know, keeping that in mind,that you're wanting to reach so
many people you know in indifferent aspects.
So tell me about this past year.
You guys have been taking thefilm to festivals and, you know,
(32:07):
really trying to get it outthere.
So tell me how that experiencehas been.
Speaker 5 (32:13):
It's been absolutely wild.
Um again, just on another, anew roller coaster with with.
So we last year probablyoctober I think, of 23 we had
kind of made this awesome planwith sasha nanyo to have them
come to america and we do ascreening in in March in New
(32:35):
York so that they could see theBig Apple and you know, bringing
their kids and all that kind ofstuff.
But Anyo, you know, he started,he just started getting really,
really bad with the.
Yeah, he progressed prettyquickly, yeah, he progressed
very quickly from like Octoberto December and then even
January to February, and thatkind of changed our approach
(32:58):
where we kind of we wanted tofocus a little bit more on
specific festivals Academyqualifying festivals but we kind
of did a shotgun approach atthat point, just trying to get
the film into as many festivalsas possible so hopefully Sasha
and Anyo could experience whatit would be like to go and see
it with an audience.
So we entered a lot in Europeand things like that.
But fortunately, you know,before he passed, they were able
(33:22):
to have a friends and familyscreening in the Netherlands and
then I think it was like twoweeks later we we still had the
screening in New York.
Speaker 4 (33:31):
yeah, in in New York, yeah but we, yeah, but we also
did.
You know we did in Switzerlandlast year for the big
international ALS and motorneuron disease meeting.
You know we had a a kind offancy film screening, if you
will, there and we had a littlered carpet, we had like signs,
we had stickers, we hadeverything and Anyo and Sasha
(33:52):
and the girls were both thereand it was.
It was really.
I think it's spectacular the wayLukey is moving through the
world, kind of in a, in a dualcapacity, if you will, one like
just that, that festival reach,where most people don't have a
lot of personal connections, andit's, you know, kind of getting
(34:13):
out there in that way.
But then also this, this reallycool reach within ALS and motor
neuron disease community and,and you know it started with
that kind of premier, if youwill, at the international.
And from then I personally andother organizations have been a
part of just you know showing,doing leaky showings throughout
(34:34):
the ALS community around theworld.
You know different countriesare doing different showings and
you know hosting differentthings.
So I think it's you know Anyo,before he died, knew that that's
where it was going.
Speaker 3 (34:47):
That you know that Lukey was in festivals and we
were in.
Speaker 4 (34:50):
New York doing our world premiere, but then also
the ALS world was really beingexposed to it as well, and I
think that's what's been sospectacular about this team is
that we've really approached iton all sides, you know.
Speaker 3 (35:05):
I love that, I love that and that makes my heart so
happy, like knowing that he wasable to experience that.
Tell me some of the feedbackthat you received at these
screenings or festivals andspecifically, maybe things that
you didn't expect or you knowthat were great learnings from
(35:30):
that.
Speaker 1 (35:32):
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 diseasethat we didn't really know
nothing about me personally andit's also a lot of people don't
know about it.
You know, some people know itas Lou Gehrig's disease and you
know there's that aspect of it.
(35:52):
They're like oh yeah, I'veheard of it.
You know, they know about theice bucket challenge, but a lot
of people aren't very informedabout what ALS is.
I remember, even when we weremaking the film, someone told me
you should have chosen adifferent disease that people
know about.
Like, oh, I should have done acancer film or an AIDS film.
Speaker 4 (36:07):
It's like no one knows about this film because
but through the process, it's sosurprising to know how many
people have actually beenaffected and it's more common
than we think.
Yeah, Interesting.
You know I've shown itpersonally to a lot of ALS
(36:28):
organizations, either in personand showed the film and, you
know, talked about it afterwardor on webinars.
And it has struck me indifferent countries, people who
work in the ALS and motor neurondisease space are so taken
aback at and this will be myword the ease with which we're
able to tell the story of ALSand, as practitioners, people
(36:52):
who've been working in the fieldfor sometimes many, many, many
years they say, ah, okay, like Ihave struggled to talk about
how to explain this to adults,much less children, which they
aren't.
So we're so grateful that Lukeyis out there to help with that
process, but that they see itand it makes it just easier to
(37:16):
access and easier to explain.
And I've had many, many clinicsaround the world say we're
going to use this for our adultsas well, like, yeah, you made
it for kids, that's great, goodfor you.
We're using it for adults,perfect.
Speaker 3 (37:34):
Do what you need to do.
Yeah, I was going gonna askabout that and then also like
one of the things that I learnedin the our first chat was that
the film was also intended tofor kids that are affected by
als to be able to tell theirfriends about ALS, which I think
(37:57):
is a whole other level for kidsto talk about ALS to other kids
that don't know anything aboutit.
So are you learning that that'sbeen really successful as well?
Speaker 4 (38:13):
So I don't mean to talk too much, I'll say this
quickly.
But I do a program calledY-Care which is a caregiving
skill education, training,support program for kids who
provide care to a family memberacross neurological disorders,
including ALS.
And I have shown when we'vedone Y-Care, I'll show Lukey in
the lights, and I have shownwhen we've done Luke.
(38:34):
When we've done Y care, I'llshow Lukey in the lights.
And after this combination oflike sitting all day and talking
about what this disease is andhow do we help care for it, then
they watch this movie.
You see that like defenses godown.
You see kids interest insharing more as opposed to just
(38:58):
kind of saying, yeah, my dad orgrandma has this, and then
moving on.
But it's almost like we'regiving them more tools to be
communicative with their peersand 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 thatlink and show it at my school
(39:18):
and whatever, and it it givesthem more I want to say
ammunition in a positive way fortalking about and kind of
creating a more supportiveenvironment around them.
Speaker 3 (39:30):
Awesome and you mentioned I don't know what I
want to say it right, do I sayoh, I know, is it Global Neuro Y
Care, right on.
It is yeah, that's because I'mat the website.
I'm at the website and I justwanted to talk about the website
(39:51):
.
Speaker 4 (39:51):
So yeah, so if you direct everybody to Global Neuro
Y Care, not only is there a tabfor the Lukey, they can watch
the full film, there's all theeducational materials, there's
the coloring book, free ofcharge, and then there's a tab
where they can get any of theother resources for kids and
families in ALS, including thegraphic novel which was just
(40:15):
translated into its 12thlanguage, and it's all free of
charge.
Like they just download it allgood, free, take it however many
times they want, print it, sendit to anybody they want.
Yeah.
Speaker 3 (40:26):
Yeah, okay, and I'm on the website right now and
this is where I got the coloringbook for my great niece.
And then I printed it out.
This is also where I went towatch the movie and it's really
simple.
There is no charge.
You put in your first and yourlast name and your email and
(40:48):
then you're able to watch themovie.
And, like you said, there'sother resources here caregiving
videos, and I will put a link inthe show notes on my website
and Facebook page, both at I'mDying to Tell you podcast, but
(41:09):
again, it'sglobalneurowhyecareorg.
Speaker 4 (41:14):
Thank you, lori.
No, that's awesome.
We're, we're really excited.
Speaker 3 (41:18):
Okay, so that's the best way to watch it.
And then, what can we do tohelp spread this film?
To talk about Lukey to you knowhow, like my friend Shirley,
she's up here on my wall,shirley Schmelze.
(41:38):
She was the one that designedthe sunflower and made the
sunflower be a symbol for ALS inthe United States, and I was a
part of that little focus groupmany years ago, and now you'll
see that sunflower as a symbolof ALS.
(42:01):
How do we help bring Lukey as asymbol to kids affected by ALS?
Speaker 4 (42:11):
Well, I'll just jump in really quick and say, as a
global nonprofit, our goal is tocreate as many materials as
possible that are accessible toas many children as possible,
meaning things that get to betranslated across multiple
languages, things withoutlanguage.
So, frankly, we need as manydonations as possible to
(42:33):
continue spreading Lukey and allof Lukey's materials around the
world, and there are severalplaces on the global neuro white
care page that people candonate, and any amount is, you
know, obviously incrediblygrateful.
Yeah, yeah.
So, first and foremost, yeah,helping us continue to do the
work.
Okay.
Speaker 3 (42:52):
Tell me.
I feel like you have somethingto say.
Speaker 5 (42:54):
Sure, yeah, okay, tommy, I feel like you have
something to say.
Sure, yeah, yeah, please go toglobalneurowhikeyorg and help us
get Lukey's message out intothe world.
And I'll also add you know, oneof the demands and kind of
crazy requests from audio isthat this film be Oscar worthy.
And you know, three years ago Iwas like I kind of dismissed
(43:16):
that.
I was like, look, we got tomake a good film first.
I don't know anybody that justgoes off and kind of you know,
sets their focus on doing thatfirst and foremost.
Well, you had asked about thefestival circuit and it being a
wild, wild year for us.
We have been privileged toscreen in 15 Oscar qualifying
(43:38):
film festivals.
We're in over 75 festivalsaround the world.
We've won at 24 festivals, manyof which the wins come from the
audience, which is absolutelyincredible.
And because of that we have nowLukey has qualified to be
considered for the Oscars.
So Lukey is sitting on theOscar portal right now and will
(44:03):
be part of the voting process inDecember.
So we are going to honor Anya'scrazy last request of trying to
get Lukey on the big red carpetstage, because we would love to
not only honor that idea but toget there and to use that as a
platform to help spread theawareness around ALS Global
(44:25):
Neuro-Wide Care, the ALSAssociation.
In my kind of biased perspective, you know what's really been
going on in the ALS communityover the last 10 years.
We had the Ice Buck bucketchallenge.
When I share that with peoplethey're very surprised that it
was 10 years ago.
There's been a lot of greatkind of progress with some
pharmaceutical drug advancementsand things like that.
(44:47):
And now, for the first timeever, with Global Neuro-Y Care's
support, there's something forchildren and families.
Neuroycare's support there'ssomething for children and
families.
So we want to take it all theway and do as much as we can
with it possibly, and getting tothe Oscars is just kind of the
beginning of what would bepossible.
So again, any support to GlobalNeuroYcare would help with that
(45:09):
and the additional educationalmaterials that Melinda's got in
her.
You know master plan for beyond.
You know just that.
Speaker 3 (45:17):
Yeah, yeah.
What call to action is mostimportant for the listeners that
want to help get Lukey on thered carpet?
What specifically can we do?
Speaker 5 (45:33):
For any of your listeners to help us get Lukey
onto the red carpet for theOscars, as we're campaigning for
all of that.
Yeah, having them share,reshare go to
globalneurowhitecareorg.
They could watch the film andwe would love for people to just
share what they experiencedfrom watching it, a little quote
(45:55):
that we can reshare on oursocial media.
People can also go toLetterboxd it's an app or a
website letterboxdcom and leavea little review and also do that
on IMDb.
All of that sort of stuff helpsus and it helps build momentum
about just kind of getting it tothe masses and spreading it
(46:17):
outside of, you know, just theALS community, because we want
to let voting members of theOscar, the academies, know that
Lukey is coming, lukey's here tostay and we're going to go all
the way and do our best.
So we would love all thesupport we can get.
Speaker 3 (46:33):
Okay, great.
Speaker 1 (46:35):
Add to that too, even like Rotten Tomatoes, if you
can, because there's a lot ofaudience members that can leave
reviews on Rotten Tomatoes.
So that's another venue thatpeople can leave comments.
Speaker 3 (46:44):
On Rotten Tomatoes, okay, and I'll put some links in
the show notes so thatlisteners can grab a direct link
there as well.
Okay, great, okay.
Speaker 5 (46:58):
So Globinar Y Care, go to their Instagram, help
reshare the stuff that Melindaand her team is sharing and
posting.
It's not just Lukey, it's alsoadditional work that they're
doing.
And then Big Rin, our Big RinProductions social media.
We're focusing on the film fromthe festival perspective, but
with those two social mediasyour listeners and everybody can
(47:21):
get more than enoughinformation on, you know,
keeping track of what's going on.
Speaker 3 (47:27):
Okay, awesome.
My great niece wanted to knowif you're going to make another
one.
Speaker 5 (47:33):
A sequel.
Speaker 3 (47:34):
Yeah.
Speaker 5 (47:36):
Or a prequel, yeah, or a prequel you can do, a
prequel yeah.
Speaker 3 (47:39):
I can't really do it.
Speaker 5 (47:42):
Does she want to be a voice in the next one?
Speaker 3 (47:45):
Yeah, okay, yeah, she has quite the voice.
She has the voice, that's forsure.
Oh my gosh, after she left lastnight, I did not move Five is.
Speaker 4 (47:58):
I did not move five.
Yeah, it's a really good age.
Speaker 3 (47:59):
really good age, um, okay, so, since I ask at the end
of every episode, money anddynatel is, why don't we, from
Lukey's perspective, if he wasable to use his robot voice?
So, lukey, what are you dyingto tell us?
(48:22):
And any of you can jump in andanswer.
Speaker 4 (48:28):
I'm dying to tell you that it's okay to talk about
ALS with everybody you know.
Speaker 1 (48:38):
Yeah it's okay.
Speaker 3 (48:39):
Yeah, I'm dying to tell you that I am so happy that
I can finally share my storywith the world.
Yeah, I love that.
Speaker 5 (48:49):
And I'm dying to tell you that every single one of us
has a story to share, and whenwe can shine a light on our
story, we can help make animpact around the world and on
others.
Speaker 3 (49:03):
Absolutely yeah, which is the reason I do this
podcast because everyone has astory and every voice matters,
whether you're using a speechgenerating device or if you're a
robot.
Every voice matters to helpbring awareness to ALS, to help
(49:28):
bring comfort and understandingto kids, to teens, to even
adults about a disease that isso complicated and so
(49:48):
devastating.
I just cannot thank you allenough, so I appreciate you all.
Speaker 5 (49:54):
Thank you, lori, it's an honor to be here.
Thank you, Lori.
Speaker 4 (49:56):
It's an honor to be here.
Thank you, Lori.
Speaker 1 (49:58):
It's nice to meet you again.
Speaker 3 (49:59):
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 andthen you get something like ALS
(50:25):
or cancer or any life alteringdisease that impacts the entire
family, and sometimes thetoughest part is thinking about
the impact that the disease orthe new situation will have on
(50:51):
your child.
I know that's the way it waswith me and my children.
Even though they are 32 andalmost 34 now, it still is that
way.
So I love what this team hasdone and continues to do and I
(51:13):
really would love it if youwould join me and Toby and
Adrian and Melinda all on thevirtual screening of Leaky and
the Lights and again, it'shosted by I Am ALS and it's
(51:34):
going to be on Tuesday, november12th, at 7pm Eastern Time.
I'll be putting information upand I'm sure I am ALS will as
well on all of their socialmedia and mine at I'm Dying to
Tell you podcast.
And yeah, if you're new here,you can find me pretty much
(51:58):
everywhere on Facebook, twitter,instagram, linkedin and even
TikTok, all at I'm Dying to Tellyou Podcast.
Thank you so much for beinghere.
I really appreciate you.
(52:19):
Okay, until next time.
Know you are loved and notalone.
Thanks for listening.
Speaker 2 (52:36):
Thank you for listening.
Hey, I'm Paul.
Speaker 1 (00:10):
And I'm Christian.
Speaker 2 (00:11):
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
the first day we laid eyes onher the queen of the queen city,
(00:32):
our mom, your host, lori.
Speaker 3 (00:49):
Hello, I'm Lori, your host of.
I'm Dying to Tell you Thank youfor being here.
(01:17):
Unique, where the focus of ourchat is about Lukey.
Lukey, lukey, my only robotfriend, the only robot that has
been diagnosed with ALS.
Lukey is the star of a film, ashort animated film, that was
born out of love and necessityto help tell children about ALS.
(01:42):
If you've been listening for awhile, I actually spoke to the
creators of Lukey and the Lights, which is the name of the film
a young couple who had ALS comeinto their life and needed a way
to tell their young children.
(02:02):
So if you go back to 2022,you'll find the episode, and at
that time the film was going tobe called Luca and the Lights,
so you'll see that in the titleif you want to go back and look
for it.
So when Anja Sniders and I'mprobably not saying it right,
(02:26):
because this couple's from theNetherlands, but when Anja was
diagnosed, he and his wife,sasha both looked around to find
resources to help them explainALS to their young children and
even though they were bothschool teachers and had been
(02:49):
trained to have difficultconversations with children,
they still were on a quest tofind information, to find aids
that would help them bestexplain something that's so
complicated and very scary tokids.
(03:12):
After they didn't find it, theygot together with an animated
production team, big GrandProductions, out of California,
and now there is an 11 minuteshort film, an animated film
(03:33):
called Loki and the Lights thatdoes such an incredible job
illustrating ALS.
And what I love about this isthey didn't stop there with the
film.
They actually teamed up withGlobal Neuro-Wide Care to make
(03:54):
sure that anyone that wasshowing this film to their
family, to their children, thatthey had additional resources
and support to go along with it,and have worked really hard to
(04:14):
make this available andaccessible in different
languages different languages sothat no one is out there
scrambling for resources todeliver this really tough news
(04:35):
to someone they love.
I cannot tell you how much thisinitiative means to me.
You know I've had ALS for 20years and my two sons were 11
and 13 when I was diagnosed andstill I will tell you that the
(04:57):
day we sat them down and toldthem that I was diagnosed with
ALS and told them what thatmeant, that was the hardest
conversation of my life, and myhusband's as well.
(05:21):
So I am all in team Lukey, somuch that our I am ALS community
outreach team is going to behosting a virtual screening of
(05:41):
the film Lukeyuki and the Lightson Tuesday, november 12th, at 7
pm Eastern Time.
I will put that link in theshow notes.
I will also put it in my bio onInstagram at I'm Dying to Tell
you podcast.
(06:03):
So within the hour we will showthe film it's only 11 minutes
and then we will have all of theguests today on the call as
well, so then they can answeryour questions anything that you
have.
So I'll just be sending backand facilitating.
(06:28):
This will be your chance to askthem about Lukey, about the
film or the foundation that iscreating all of the resources to
help all of our children.
So all right.
So today I am jumping on Zoomwith the director of Leaky in
(06:51):
the Lights, toby Cochran.
Also the producer, adrienneOchoa, and the founder of Global
Neuro-Wide Care, dr MelindaKavanaugh.
Absolutely brilliant what she'sdoing.
So, okay, time to meet TeamLukey.
(07:15):
Let's go to our chat.
Speaker 1 (07:19):
Hi Laurie.
Speaker 3 (07:23):
Hello, good to see you guys.
Thank you all for joining me.
I'm really really excited forthis chat, so we're picking back
up after a couple of years agositting down and talking to you
all.
Melinda, you weren't a part ofthat conversation, so I'm really
(07:43):
happy that you're here.
Speaker 4 (07:45):
Yeah, I'm happy to be here.
Speaker 3 (07:47):
Yes, yeah, but we had the masterminds behind the
project, both Anyo and Sasha, soI'm also doing this episode in
memory and in honor of Anyo.
So why don't we start by takeus back and do a little recap of
(08:12):
like how it all even started?
Speaker 4 (08:17):
Well, I think it's interesting because we have
different we came in atdifferent time points.
Yeah, you know what I mean.
Yeah, I I'll just say my littlebit and pass it over to Toby
and Adrian, who are the theactual artists and creators.
I love telling this because Igot an email out of the blue
from Sasha I don't know how longago now, but it was a long time
(08:41):
ago and I had written a graphicnovel for children and youth
living in families with ALS andit had just been translated to
Dutch.
And she saw the graphic noveland sent me an email and said I
have this idea, for you know thestory.
My husband and I are creatingthis.
(09:01):
We have children.
He is, you know, fairly newlydiagnosed with ALS and we want
something that is reallyaccessible and kind of fun,
shall we say, for children toreally understand ALS.
But you know, all of myclinical work and all of my
research has been in, you know,really developing programs and
(09:23):
education and materials andsupports for children and youth
in families with ALS.
So she reached out to me andsaid 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
(09:45):
into the ring and saying youknow what do you need, I'll be a
part of it, happy to do what Ican.
And so, personally, that's howI got involved with.
Lukey was just answering a coldemail from someone in the
Netherlands.
Speaker 3 (09:59):
Oh my gosh.
So what is your connection tothe ALS space?
So what is?
Speaker 4 (10:05):
your connection to the ALS space.
Yeah, I don't have anybody inmy family with ALS, Never had
anybody in my family with ALS.
I'm a licensed clinical socialworker.
I'm also a professor of socialwork and all of my clinical work
was in neurology.
So many like 25 years ago plus,I started working in neurology
(10:28):
and working directly withfamilies and going into homes
and nursing homes and hospitalsand holding hands and talking
with kids and trying to figureout how to help them, how to
help families, how to create amore, I suppose, holistic
approach in disease managementand knowledge and care, because
(10:48):
there's just, you know, there'sstill so many areas that don't
get included and children andyouth are a huge piece of that.
So I came about it from myclinical practice and training.
Speaker 3 (11:02):
So yeah, okay, great, all right Toby.
Speaker 5 (11:05):
As Melinda shared.
I think, melinda, you werecontacted in February of 2021.
And then they contacted us, andthen we said no.
Speaker 3 (11:15):
Oh, I didn't know that, yeah.
Speaker 5 (11:17):
Because I just I recommended there's so many
great incentives for studios inEurope where the government
helps subsidize a lot of thesetypes of programs, and I was
like, why would you want to workwith American animation studio?
But they enjoyed, Adrian and I,and our our kind of like
creative approach, what we woulddo with with their idea.
(11:39):
And then we started on Mookiein March of 2021.
Actually, fun Easter egg.
The clock in the opening shotsays March 16th.
That's the very first date thatwe started production in 2021.
So that was a little Easter egg.
Speaker 3 (11:59):
Oh, nice, nice.
Speaker 5 (12:01):
And then we worked with Melinda the entire duration
of the project, our expertmedical advisor, because that
was one of the you know commands, demands from from Anyo and
Sasha was you know how to bemedically accurate, so she was
(12:45):
our go-to for all of thatoutside of just you know,
picking Anyo's brain and asking.
You know from firsthandexperience, like for Lukey to be
at home by himself and you knowgo through the flood of
emotions that were kind ofovertaking him, because that was
something that was never a partof the story or script and,
from what I could tell, it wasreally important that we needed
to honor the emotions and stufflike that.
And thankfully backed me up onthat saying.
(13:07):
Not only is that important, butit also helps encourage
children for understanding.
It's important to honor theseemotions as well and display
them and not kind of shy awayfrom that For sure, that's kind
of a bit of our journey.
And then Melinda sat, you know,pretty much shotgun, with us on
(13:29):
a crazy freaking roller coasterfor the last three years I mean
, it's really been interesting,laurie, because it, you know, I
I'm not.
Speaker 4 (13:41):
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'mnot, 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'rethe experts, they know what
they're doing.
You know, yeah, I come fromthat clinical perspective, but
it's really been.
It's been a really interestingand a very um, yeah, roller
coaster.
It's had its ups and downs.
I'm sure that you put anybodyon your podcast who has made a
(14:03):
film of any length in any,whatever makeup will tell you
what a crazy roller coaster itis.
But yeah, I mean, it's really,it's been interesting.
Speaker 3 (14:16):
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 (14:26):
Correct.
Yeah, so my name is AdrianOchoa.
I was the producer of Luke andthe Lights and my personal
connection to ALS was that mygrandfather got diagnosed with
ALS in 1994.
And when he first startedexperiencing symptoms he had
trouble swallowing, he couldn'treally swallow and it was his
throat.
So when he went in and he gotdiagnosed, like the whole family
(14:46):
was like what is this?
Like we're not really, you know, we've never heard of this.
And within a year he passedaway and again working with
Melinda.
You know, one thing thataffected my family is that the
family becomes the caretakers.
I remember my aunts and myuncles and my mom, my mom
especially taking care of mygrandfather as he um, as he got
(15:08):
worse, and after that, likeafter my grandfather passed away
, then you know we were tryingto be more at the more um,
proactive in terms of the alscommunity.
We would always do the alswalks 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 (15:25):
Um, let's just go back real quick and, to my
listeners, I will link back toour original chat a couple of
years ago where sasha and anyowere able to tell their story
and their motivation for thisamazing idea in the first place.
(15:47):
So you can listen to thatepisode after this one.
But who wants to just give aquick, you know, just talk about
from anyo's perspective themotivation for this film's there
was quite a bit.
Speaker 4 (16:07):
There's a lot of motivations, I think Laurie yeah
.
Speaker 5 (16:10):
I mean first and foremost for Sasha and Anya.
It was a way for them to helpexplain what the heck was going
on with his body to theirchildren, because at the time,
you know, to kind of help remedythis disease for them to
explain to their kids, sashadesigned and created this robot
character with light bulbs inthe joints and as the disease
(16:30):
progressed they could kind offollow along and fill in the
light bulbs one by one.
As you know, anyo's wrist orelbow would kind of go out.
And then, like Melinda shared,her comic book literally is the
only thing years ago that wasremotely accessible for families
and thank goodness they wereable to find it online.
(16:51):
But for them, as Sasha and Anjoshared, they searched for years
trying to find something whichjust led them to like, okay, we
just need to create our ownthing.
And then the robot characterkind of became an unofficial
mascot of the Dutch, theNetherland ALS community and it
just kind of grew in popularityfrom there.
Speaker 3 (17:14):
Oh, okay.
Speaker 4 (17:14):
And one of the things you know, lori, I mean like one
of the things that's hard totalk 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
(17:35):
that happens with every person,and so just trying to be able to
figure out a way to convey thatin like a fun and engaging way
for kids primarily but I'm surewe can talk more that quite
frankly, I think more adultshave gotten more out of watching
Lukey quite frankly as far as,like, what's been you know, kind
(17:58):
of responded to me but yeah,it's really it's hard to say
here's what a disease is andhere's what it looks like in a
way that makes sense toparticularly young kids, if
they're still really, you know,and their children are fairly
young, they're still reallyconcrete thinkers.
You know One plus one is two,like that's all there is to it,
and you know something like ALSthat looks weird and different
(18:18):
and, you know, kind ofcomplicated.
Speaker 3 (18:22):
Yeah, absolutely.
I think when we spoke you allhad sent me kind of like a rough
animated storyboard kind ofpiece and you know I was able to
tell what was going on in thewhole story and at that time it
was Lucas and the lights.
(18:42):
At that time it was Lucas andthe lights.
So tell me about the namechange.
And then, what else did youchange?
Didn't you learn from our lastconversation that was really
important to put out the finalproduct in one minute.
Speaker 4 (19:01):
No, I'll say one thing about the name change.
The one thing I can say aboutthe name change is we were
working with a lawyer.
You know the foundation existedalready.
We were working with a lawyer,with all the trademarks and
everything, and it's quite theprocess and I am not the expert
on that, which is why we have alawyer doing it and they, you
(19:22):
know, you submit all of thesethings and it goes through all
of these checks.
And it got flagged Becausethere is a film called Luca,
which has nothing to do with ALSor robots or any of like
anything.
Yeah, but what our attorney wastold and kind of conveyed to us
(19:45):
is that you know another largeanimation studio apparently
doesn't take too kindly, and theway they kind of registered
their trademarks is on anythingvery remotely related.
And so we were told that somelittle baby nonprofit with this
brilliant film about a robotwith ALS we would get
(20:08):
obliterated.
So we had to change the name.
Speaker 3 (20:11):
It's funny because even back when we talked a
couple years ago, I startedtalking to my great niece, who
at that time was three, usingLucas.
She remembers our conversationsabout Lucas.
She was over yesterday and Iwas really interested to start
(20:36):
talking to her about it againand I was saying Lukey, and she
said Lucas, and then she saidhe'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.
We did the right yeah she waslike pulling up on disney and
(20:58):
I'm like, no, no, she's likewhat's that on what?
How do I get is it on youtube,you know?
I mean she wanted to know howdo I go back and watch it.
Anyway, I had her come in hereand watch it and I really made
note.
Um, you know what she wasengaging in.
Uh, you know she's five, she'sbusy, she normally isn't allowed
(21:19):
in my office, so she waslooking around, you know, like
and um.
But I was really really touchedbecause she saw him making the
wheelchair, she saw him playingin the wheelchair and she said
that's like new Auntie Lori.
(21:40):
Now I use a walker sometimes,but she put it together that it
was a device and then she saidhe looks like he feels a lot
better when he was in thewheelchair racing.
And to her, that gave her thislight, an encouragement light,
(22:05):
when Auntie Lori is using thewalker.
That must help her, that mustmake her feel a lot better.
Because look what it did toluki and I'm like, oh my god,
you know she didn't sit thereand look at it the whole 11
(22:26):
minutes, but she got that out ofthat and I was like, okay, okay
, she's fine, that was perfectand I need a little video clip
of her telling me about thatthat I'll share.
The other thing she said waswhat are the friends' names?
She really wanted to know.
She asked me later on thatnight what are the friends'
(22:49):
names?
And I'm thinking that maybe shewants to be one of the friends.
But it was really.
Does she have the coloring book, did you?
Speaker 4 (22:59):
give her the coloring book.
Speaker 3 (23:00):
Oh yeah, yay.
I printed the coloring book andI was flipping through it with
my sister before we watched it.
I went in to ask her opinion Doyou think that is too much?
She said no, it'll be fine.
Well then she overheard me, myniece, and she was like coloring
(23:22):
book.
And then when we were watchingthe 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 somequestions for her.
She's like why do your handslook like that?
(23:45):
Why can't you chase me Stufflike that?
It was good, it was really good.
Speaker 5 (23:53):
That's incredible.
That's that's incredible.
Speaker 4 (23:55):
That just means everything, lori.
It just means everything thatyou share, that yeah.
Speaker 3 (24:00):
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 timeand that was with her dancing
(24:21):
around in the chair and you know, asking me this and that about
my office.
Yeah, I was really, reallyimpressed, so I wanted to share
that Thank you.
Yeah, definitely.
Speaker 5 (24:33):
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 incredibleseeing audience members and
things like that from all overrespond to the film, especially
the ALS community, but more sochildren responding.
As you know, that's probablyone of the youngest viewers.
Maybe we've been to a couple offestivals, maybe there's some
(24:54):
five or six year olds in theaudience.
But like, the kids get it.
You know they engage, they finddifferent moments that they can
kind of associate with, justlike your niece was sharing
about the wheelchair,understanding, like you know,
other kids with family membersyou, you know, they kind of race
or they play with thewheelchair and stuff like that.
(25:15):
So they connect to certainpoints and, even though the
ending is sad from all the kidsthat I've heard from or speaking
with festival directors, every,every single one, even though
they're sad or there may betears in their eyes at the end,
they all understand it and areable to kind of engage with the
family, their parents even moreso.
(25:37):
And it's not shied away from,and that was, that was something
that we were very intentionalabout and we had many
conversations with Sasha, nanyawhere, and Melinda where in
Europe and other places aroundthe world.
You know, talking about deathis not shied away from at all,
but more so, kind of in westernculture, it's like, oh, we don't
(25:58):
really go there, don't, don'ttalk about that, or or don't
show a character you knowpassing away on screen or you
know cut away and that, thatsort of thing.
You know, and that wassomething that we wanted to be
intentional about showing andand just like, hey, this is a is
a part of life and a part ofthis terrible disease.
Speaker 3 (26:16):
Yeah, I don't know that.
I let you fully answer myquestion on things that you saw
that you needed to change overthe last couple of years.
Did you have any more to that?
Speaker 5 (26:31):
Well, since and God bless you for watching an
animatic, because I know that'sprobably difficult to to watch
and understand um, I mean, wepitch that thing around to a lot
of foundations and even eventhe als association.
And you know, for people thatdon't kind of understand how
animation is made, everything'sdrawn first with like a kind of
(26:52):
a storybook look, or what wecall storyboards, and it's cut
together and timed together, butit's all black and white.
Speaker 1 (26:58):
You know, it's actually kind of cool though
yeah, frankly yeah, theanimatics are awesome, yeah yeah
, even early on, like we had toreally like walk sasha and anya
through the process.
You know, it's like these arejust drawings and then we're
gonna go into layout and thecharacters are gonna look very
static, and we had to kind ofwalk them through that process
as well, because if you're notused to seeing the production
pipeline, it's very charming.
(27:19):
What am I looking at?
Speaker 5 (27:20):
and you know, some people don't there's.
I mean, there was all kinds ofstuff that we ended up changing
or kind of modifying, since youprobably saw the animatic a
couple years ago, just from froma story perspective.
For me, as I was developing itand the more I got to learn
about anyo, the more I wastrying to infuse luki with the
(27:42):
kind of personality andcharacter traits of anyo and and
you know it's a little cliche,like when, when people,
directors and things like thatshare, like usually, the
characters or the story needs totell you what it needs to say.
And I kept finding myself inthat position of Lukey was
really wanting to say certainthings and I needed to kind of
(28:02):
explore what those were, onebeing the moment when he got
home that evening after like afull day of testing at the
doctor's office.
Another being, you know know,the inspiration for luki to make
his own wheelchair was directlyinfluenced by learning.
Anyo was this kind of this dyi,you know, craftsman, made stuff
(28:27):
around his house like his, histable and bookshelves and, yeah,
love dungeons and dragons andpainting, all this kind of stuff
.
So that was, like you know,that kind of artistic and also
just hands-on approach was likeokay, this is very much who
Lukey is as well, and justlooking for moments and those
kinds of slices of authenticityand honesty to just like kind of
(28:50):
plug in and then trying tostitch it all together.
Oh, I love that.
Yeah, that's really goodauthenticity and honesty to just
like kind of plug in and thentrying to stitch it all together
oh, I love that.
Speaker 3 (28:56):
Yeah, that's really good and for your niece.
Speaker 5 (29:00):
Uh, the friend's name's the big yellow guy's,
theo, and the purple one is nifa.
Uh, theo is actually the voiceof anyo, so anyo's been
immortalized in the film foreverand we were able to capture his
voice.
So a lot of people don't knowthat Anyo was the voice of the
big yellow guy, the friend.
Speaker 3 (29:20):
Oh, that's great.
Okay, perfect.
Yeah, I wondered about some ofthe things and then like the
roll the dice sticker, you know,is there any meaning behind
that?
Speaker 4 (29:33):
Oh, yeah, yeah there any meaning behind that, or?
Oh, yeah, yeah yeah, there'smeaning behind everything.
They did such a great job, lorithere's meaning behind
everything, absolutely I mean.
Speaker 1 (29:42):
That's why, luke, he lived in a windmill, because he
knows as a certain another meansbut you know, you know it was
actually.
Speaker 4 (29:50):
It was interesting and there were, you know, there
were many conversations, some ofwhich I deeply involved in
trying to understand.
And this is an interestingthing, laurie, like because it
was created to be a global film,right, so there's no language
to global audiences, likegetting it out there, like here,
(30:11):
als group, in whatever countrythis is, watch this film with me
, see what you think, and so itreally resonates.
But it was interesting makingit.
You realize how differentcountries approach things very
differently, and particularlyhealthcare.
So one of the early kind ofsetups and structures had a
(30:34):
nurse in the home, kind oftaking care of Lukey and doing
all of this stuff, and one ofyou know my first comments was
like that's not going toresonate, certainly not in the
US, you know, you don't justautomatic, you know, and they
were like well, in theNetherlands you automatically
get this, and I said well, inthe US you don't, and lots of
(30:56):
other places around the worldyou might barely have family or
friends.
So it was really interesting tokind 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.
(31:16):
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 areally wonderful way it came
about, because it does, itreally does resonate on that
global level.
Because of that, because itdoesn't kind of make you
immediately go wait who what youknow, because friends and
(31:39):
family take care of people.
Speaker 3 (31:41):
Right, right, right, yeah, and I can see how
challenging that has made thewhole project.
You know, keeping that in mind,that you're wanting to reach so
many people you know in indifferent aspects.
So tell me about this past year.
You guys have been taking thefilm to festivals and, you know,
(32:07):
really trying to get it outthere.
So tell me how that experiencehas been.
Speaker 5 (32:13):
It's been absolutely wild.
Um again, just on another, anew roller coaster with with.
So we last year probablyoctober I think, of 23 we had
kind of made this awesome planwith sasha nanyo to have them
come to america and we do ascreening in in March in New
(32:35):
York so that they could see theBig Apple and you know, bringing
their kids and all that kind ofstuff.
But Anyo, you know, he started,he just started getting really,
really bad with the.
Yeah, he progressed prettyquickly, yeah, he progressed
very quickly from like Octoberto December and then even
January to February, and thatkind of changed our approach
(32:58):
where we kind of we wanted tofocus a little bit more on
specific festivals Academyqualifying festivals but we kind
of did a shotgun approach atthat point, just trying to get
the film into as many festivalsas possible so hopefully Sasha
and Anyo could experience whatit would be like to go and see
it with an audience.
So we entered a lot in Europeand things like that.
But fortunately, you know,before he passed, they were able
(33:22):
to have a friends and familyscreening in the Netherlands and
then I think it was like twoweeks later we we still had the
screening in New York.
Speaker 4 (33:31):
yeah, in in New York, yeah but we, yeah, but we also
did.
You know we did in Switzerlandlast year for the big
international ALS and motorneuron disease meeting.
You know we had a a kind offancy film screening, if you
will, there and we had a littlered carpet, we had like signs,
we had stickers, we hadeverything and Anyo and Sasha
(33:52):
and the girls were both thereand it was.
It was really.
I think it's spectacular the wayLukey is moving through the
world, kind of in a, in a dualcapacity, if you will, one like
just that, that festival reach,where most people don't have a
lot of personal connections, andit's, you know, kind of getting
(34:13):
out there in that way.
But then also this, this reallycool reach within ALS and motor
neuron disease community and,and you know it started with
that kind of premier, if youwill, at the international.
And from then I personally andother organizations have been a
part of just you know showing,doing leaky showings throughout
(34:34):
the ALS community around theworld.
You know different countriesare doing different showings and
you know hosting differentthings.
So I think it's you know Anyo,before he died, knew that that's
where it was going.
Speaker 3 (34:47):
That you know that Lukey was in festivals and we
were in.
Speaker 4 (34:50):
New York doing our world premiere, but then also
the ALS world was really beingexposed to it as well, and I
think that's what's been sospectacular about this team is
that we've really approached iton all sides, you know.
Speaker 3 (35:05):
I love that, I love that and that makes my heart so
happy, like knowing that he wasable to experience that.
Tell me some of the feedbackthat you received at these
screenings or festivals andspecifically, maybe things that
you didn't expect or you knowthat were great learnings from
(35:30):
that.
Speaker 1 (35:32):
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 diseasethat we didn't really know
nothing about me personally andit's also a lot of people don't
know about it.
You know, some people know itas Lou Gehrig's disease and you
know there's that aspect of it.
(35:52):
They're like oh yeah, I'veheard of it.
You know, they know about theice bucket challenge, but a lot
of people aren't very informedabout what ALS is.
I remember, even when we weremaking the film, someone told me
you should have chosen adifferent disease that people
know about.
Like, oh, I should have done acancer film or an AIDS film.
Speaker 4 (36:07):
It's like no one knows about this film because
but through the process, it's sosurprising to know how many
people have actually beenaffected and it's more common
than we think.
Yeah, Interesting.
You know I've shown itpersonally to a lot of ALS
(36:28):
organizations, either in personand showed the film and, you
know, talked about it afterwardor on webinars.
And it has struck me indifferent countries, people who
work in the ALS and motor neurondisease space are so taken
aback at and this will be myword the ease with which we're
able to tell the story of ALSand, as practitioners, people
(36:52):
who've been working in the fieldfor sometimes many, many, many
years they say, ah, okay, like Ihave struggled to talk about
how to explain this to adults,much less children, which they
aren't.
So we're so grateful that Lukeyis out there to help with that
process, but that they see itand it makes it just easier to
(37:16):
access and easier to explain.
And I've had many, many clinicsaround the world say we're
going to use this for our adultsas well, like, yeah, you made
it for kids, that's great, goodfor you.
We're using it for adults,perfect.
Speaker 3 (37:34):
Do what you need to do.
Yeah, I was going gonna askabout that and then also like
one of the things that I learnedin the our first chat was that
the film was also intended tofor kids that are affected by
als to be able to tell theirfriends about ALS, which I think
(37:57):
is a whole other level for kidsto talk about ALS to other kids
that don't know anything aboutit.
So are you learning that that'sbeen really successful as well?
Speaker 4 (38:13):
So I don't mean to talk too much, I'll say this
quickly.
But I do a program calledY-Care which is a caregiving
skill education, training,support program for kids who
provide care to a family memberacross neurological disorders,
including ALS.
And I have shown when we'vedone Y-Care, I'll show Lukey in
the lights, and I have shownwhen we've done Luke.
(38:34):
When we've done Y care, I'llshow Lukey in the lights.
And after this combination oflike sitting all day and talking
about what this disease is andhow do we help care for it, then
they watch this movie.
You see that like defenses godown.
You see kids interest insharing more as opposed to just
(38:58):
kind of saying, yeah, my dad orgrandma has this, and then
moving on.
But it's almost like we'regiving them more tools to be
communicative with their peersand 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 thatlink and show it at my school
(39:18):
and whatever, and it it givesthem more I want to say
ammunition in a positive way fortalking about and kind of
creating a more supportiveenvironment around them.
Speaker 3 (39:30):
Awesome and you mentioned I don't know what I
want to say it right, do I sayoh, I know, is it Global Neuro Y
Care, right on.
It is yeah, that's because I'mat the website.
I'm at the website and I justwanted to talk about the website
(39:51):
.
Speaker 4 (39:51):
So yeah, so if you direct everybody to Global Neuro
Y Care, not only is there a tabfor the Lukey, they can watch
the full film, there's all theeducational materials, there's
the coloring book, free ofcharge, and then there's a tab
where they can get any of theother resources for kids and
families in ALS, including thegraphic novel which was just
(40:15):
translated into its 12thlanguage, and it's all free of
charge.
Like they just download it allgood, free, take it however many
times they want, print it, sendit to anybody they want.
Yeah.
Speaker 3 (40:26):
Yeah, okay, and I'm on the website right now and
this is where I got the coloringbook for my great niece.
And then I printed it out.
This is also where I went towatch the movie and it's really
simple.
There is no charge.
You put in your first and yourlast name and your email and
(40:48):
then you're able to watch themovie.
And, like you said, there'sother resources here caregiving
videos, and I will put a link inthe show notes on my website
and Facebook page, both at I'mDying to Tell you podcast, but
(41:09):
again, it'sglobalneurowhyecareorg.
Speaker 4 (41:14):
Thank you, lori.
No, that's awesome.
We're, we're really excited.
Speaker 3 (41:18):
Okay, so that's the best way to watch it.
And then, what can we do tohelp spread this film?
To talk about Lukey to you knowhow, like my friend Shirley,
she's up here on my wall,shirley Schmelze.
(41:38):
She was the one that designedthe sunflower and made the
sunflower be a symbol for ALS inthe United States, and I was a
part of that little focus groupmany years ago, and now you'll
see that sunflower as a symbolof ALS.
(42:01):
How do we help bring Lukey as asymbol to kids affected by ALS?
Speaker 4 (42:11):
Well, I'll just jump in really quick and say, as a
global nonprofit, our goal is tocreate as many materials as
possible that are accessible toas many children as possible,
meaning things that get to betranslated across multiple
languages, things withoutlanguage.
So, frankly, we need as manydonations as possible to
(42:33):
continue spreading Lukey and allof Lukey's materials around the
world, and there are severalplaces on the global neuro white
care page that people candonate, and any amount is, you
know, obviously incrediblygrateful.
Yeah, yeah.
So, first and foremost, yeah,helping us continue to do the
work.
Okay.
Speaker 3 (42:52):
Tell me.
I feel like you have somethingto say.
Speaker 5 (42:54):
Sure, yeah, okay, tommy, I feel like you have
something to say.
Sure, yeah, yeah, please go toglobalneurowhikeyorg and help us
get Lukey's message out intothe world.
And I'll also add you know, oneof the demands and kind of
crazy requests from audio isthat this film be Oscar worthy.
And you know, three years ago Iwas like I kind of dismissed
(43:16):
that.
I was like, look, we got tomake a good film first.
I don't know anybody that justgoes off and kind of you know,
sets their focus on doing thatfirst and foremost.
Well, you had asked about thefestival circuit and it being a
wild, wild year for us.
We have been privileged toscreen in 15 Oscar qualifying
(43:38):
film festivals.
We're in over 75 festivalsaround the world.
We've won at 24 festivals, manyof which the wins come from the
audience, which is absolutelyincredible.
And because of that we have nowLukey has qualified to be
considered for the Oscars.
So Lukey is sitting on theOscar portal right now and will
(44:03):
be part of the voting process inDecember.
So we are going to honor Anya'scrazy last request of trying to
get Lukey on the big red carpetstage, because we would love to
not only honor that idea but toget there and to use that as a
platform to help spread theawareness around ALS Global
(44:25):
Neuro-Wide Care, the ALSAssociation.
In my kind of biased perspective, you know what's really been
going on in the ALS communityover the last 10 years.
We had the Ice Buck bucketchallenge.
When I share that with peoplethey're very surprised that it
was 10 years ago.
There's been a lot of greatkind of progress with some
pharmaceutical drug advancementsand things like that.
(44:47):
And now, for the first timeever, with Global Neuro-Y Care's
support, there's something forchildren and families.
Neuroycare's support there'ssomething for children and
families.
So we want to take it all theway and do as much as we can
with it possibly, and getting tothe Oscars is just kind of the
beginning of what would bepossible.
So again, any support to GlobalNeuroYcare would help with that
(45:09):
and the additional educationalmaterials that Melinda's got in
her.
You know master plan for beyond.
You know just that.
Speaker 3 (45:17):
Yeah, yeah.
What call to action is mostimportant for the listeners that
want to help get Lukey on thered carpet?
What specifically can we do?
Speaker 5 (45:33):
For any of your listeners to help us get Lukey
onto the red carpet for theOscars, as we're campaigning for
all of that.
Yeah, having them share,reshare go to
globalneurowhitecareorg.
They could watch the film andwe would love for people to just
share what they experiencedfrom watching it, a little quote
(45:55):
that we can reshare on oursocial media.
People can also go toLetterboxd it's an app or a
website letterboxdcom and leavea little review and also do that
on IMDb.
All of that sort of stuff helpsus and it helps build momentum
about just kind of getting it tothe masses and spreading it
(46:17):
outside of, you know, just theALS community, because we want
to let voting members of theOscar, the academies, know that
Lukey is coming, lukey's here tostay and we're going to go all
the way and do our best.
So we would love all thesupport we can get.
Speaker 3 (46:33):
Okay, great.
Speaker 1 (46:35):
Add to that too, even like Rotten Tomatoes, if you
can, because there's a lot ofaudience members that can leave
reviews on Rotten Tomatoes.
So that's another venue thatpeople can leave comments.
Speaker 3 (46:44):
On Rotten Tomatoes, okay, and I'll put some links in
the show notes so thatlisteners can grab a direct link
there as well.
Okay, great, okay.
Speaker 5 (46:58):
So Globinar Y Care, go to their Instagram, help
reshare the stuff that Melindaand her team is sharing and
posting.
It's not just Lukey, it's alsoadditional work that they're
doing.
And then Big Rin, our Big RinProductions social media.
We're focusing on the film fromthe festival perspective, but
with those two social mediasyour listeners and everybody can
(47:21):
get more than enoughinformation on, you know,
keeping track of what's going on.
Speaker 3 (47:27):
Okay, awesome.
My great niece wanted to knowif you're going to make another
one.
Speaker 5 (47:33):
A sequel.
Speaker 3 (47:34):
Yeah.
Speaker 5 (47:36):
Or a prequel, yeah, or a prequel you can do, a
prequel yeah.
Speaker 3 (47:39):
I can't really do it.
Speaker 5 (47:42):
Does she want to be a voice in the next one?
Speaker 3 (47:45):
Yeah, okay, yeah, she has quite the voice.
She has the voice, that's forsure.
Oh my gosh, after she left lastnight, I did not move Five is.
Speaker 4 (47:58):
I did not move five.
Yeah, it's a really good age.
Speaker 3 (47:59):
really good age, um, okay, so, since I ask at the end
of every episode, money anddynatel is, why don't we, from
Lukey's perspective, if he wasable to use his robot voice?
So, lukey, what are you dyingto tell us?
(48:22):
And any of you can jump in andanswer.
Speaker 4 (48:28):
I'm dying to tell you that it's okay to talk about
ALS with everybody you know.
Speaker 1 (48:38):
Yeah it's okay.
Speaker 3 (48:39):
Yeah, I'm dying to tell you that I am so happy that
I can finally share my storywith the world.
Yeah, I love that.
Speaker 5 (48:49):
And I'm dying to tell you that every single one of us
has a story to share, and whenwe can shine a light on our
story, we can help make animpact around the world and on
others.
Speaker 3 (49:03):
Absolutely yeah, which is the reason I do this
podcast because everyone has astory and every voice matters,
whether you're using a speechgenerating device or if you're a
robot.
Every voice matters to helpbring awareness to ALS, to help
(49:28):
bring comfort and understandingto kids, to teens, to even
adults about a disease that isso complicated and so
(49:48):
devastating.
I just cannot thank you allenough, so I appreciate you all.
Speaker 5 (49:54):
Thank you, lori, it's an honor to be here.
Thank you, Lori.
Speaker 4 (49:56):
It's an honor to be here.
Thank you, Lori.
Speaker 1 (49:58):
It's nice to meet you again.
Speaker 3 (49:59):
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 andthen you get something like ALS
(50:25):
or cancer or any life alteringdisease that impacts the entire
family, and sometimes thetoughest part is thinking about
the impact that the disease orthe new situation will have on
(50:51):
your child.
I know that's the way it waswith me and my children.
Even though they are 32 andalmost 34 now, it still is that
way.
So I love what this team hasdone and continues to do and I
(51:13):
really would love it if youwould join me and Toby and
Adrian and Melinda all on thevirtual screening of Leaky and
the Lights and again, it'shosted by I Am ALS and it's
(51:34):
going to be on Tuesday, november12th, at 7pm Eastern Time.
I'll be putting information upand I'm sure I am ALS will as
well on all of their socialmedia and mine at I'm Dying to
Tell you podcast.
And yeah, if you're new here,you can find me pretty much
(51:58):
everywhere on Facebook, twitter,instagram, linkedin and even
TikTok, all at I'm Dying to Tellyou Podcast.
Thank you so much for beinghere.
I really appreciate you.
(52:19):
Okay, until next time.
Know you are loved and notalone.
Thanks for listening.
Speaker 2 (52:36):
Thank you for listening.
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