April 2, 2025 • 50 mins
When faced with an ALS diagnosis, finding trustworthy information shouldn't add to your burden. This episode introduces a groundbreaking solution born from one son's love for his father.
Vikram Bhaskaran takes us through the painful journey that sparked innovation – watching his father battle ALS in India while struggling to access reliable information and expertise. The stark contrast between his Silicon Valley tech job, where brilliant minds created seamless user experiences, and the "dark ages" of health information access, drove him to action. The result? ROON.
Roon addresses the three dimensions of living with ALS – medical knowledge, practical daily concerns, and the emotional/existential questions that arise. Through short, digestible videos, users can find answers to questions they might never get to ask during brief clinical appointments.
This episode offers a masterclass in turning personal tragedy into purpose. Beyond highlighting a valuable resource for the ALS community, it demonstrates how technology, when designed with genuine empathy, can create what Vikram beautifully describes as "a doctor friend who has your back."
Download Roon to experience this sanctuary of knowledge, where the burden of searching for reliable information is lifted, and a community of experts and fellow patients are ready to help. Thanks for sharing with a friend. Hugs, Lorri
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Lorri Carey (00:01):
Hi, I'm Lorri, your host of I'm Dying to Tell you
Thank you for being here.
I am super happy that you arechiming in to this episode.
It's going to be if you are inthe ALS community or you know
(00:24):
someone that is, or if you justwant to hear an amazing story of
someone who is honoring theirfather by building something
incredible for a specialcommunity, than listening.
(00:48):
So one of the things that Ihave learned over the past 21
years living with ALS is howincredible and how powerful it
is to do a couple of things.
Number one to gather withothers who are living with ALS
(01:18):
and to be able to share ourexperiences with each other is
one.
And the second one is the veryunique opportunity when people
are living with ALS, get togather with an expert in the
(01:42):
field, whether you're at asymposium, at a conference, at a
gala and you're able to meet ascientist, a physician, a
researcher, someone that iscommitted and really involved in
(02:03):
the ALS world.
It's really a great opportunityand, like I said, a very unique
opportunity to chat with themand hear what's going on, what
they've learned, updates, and soone of the things that I
absolutely love about my guesttoday is that he has created
(02:31):
something that gives you anopportunity very similar to both
of those, and I'm going to letVikram tell most of his story.
Going to let Vikram tell mostof his story, but real quick.
(02:51):
He was a caregiver for his dadwho had ALS, and through
Vikram's experience he foundthat finding a community and
navigating medical, gainingmedical information from where
they were in India andeverywhere, could be
dramatically improved, and soVikram and his team have created
(03:17):
something very unique andaccessible to the ALS community,
and I am so excited to bringhim on to talk about his
inspiration for creating Roon ,and I want him to walk step by
(03:38):
step Roon Rune works.
I know he's going to make itvery easy for you to check out.
(13:48):
hey lori hi, how are you?
Vikram Bhaskaran (13:50):
fine, we're able to catch up finally yeah, I
know, thank you for having youknow.
I really appreciate what you doand uh, yeah, and remind me
where are you based um.
Lorri Carey (14:03):
I am in cincinnati ohio oh, amazing, amazing.
Vikram Bhaskaran (14:06):
Okay, I hope I at some point we get to meet
either in new york somewhere,yeah, yeah, that would be great.
Lorri Carey (14:13):
That'd be great.
I'd love that.
All right, all right.
Well, I'm so happy to finallycatch up with you.
You know I've been watching, uh, what you've been doing with
the rune app and and I justthink it's such a valuable
resource even me, who has hadals for 21 years, years like I
(14:39):
love it, and you know I'velearned through this podcast the
power of hearing directly fromlike that is just worth so much.
(15:03):
So, right off the bat, thank youfor putting this together and
getting it out into ourcommunity.
I really really appreciate it.
Vikram Bhaskaran (15:15):
Thank you for saying that and I'm'm very
excited to chat and appreciateyou reaching out to highlight
our work.
Lorri Carey (15:24):
So I know that you developed this app because you
had a special place in yourheart from your own experience
with ALS with your dad, so tellme a little bit about your dad.
Vikram Bhaskaran (15:43):
Yeah, I'll, you know, I'll tell you about my
dad, you know, before he hadALS so important sometimes to
kind of remember people.
You know the.
So my dad was born in India, inBangalore, actually.
He was born in a town calledMadurai, which is in a state
called Tamil Nadu.
Uh, but we are from Bangalore,which is in South India, and my
(16:06):
dad was an entrepreneur.
He was a tennis player.
Uh, he was an incrediblestoryteller, um, very big
personality, uh, gregarious, andloved sort of really everything
about life.
Yeah, he was the person youwould kind of gravitate towards
(16:26):
in a party or in any sort ofsocial setting.
Lorri Carey (16:29):
Oh, I love that.
Vikram Bhaskaran (16:31):
Yeah, and he was, you know, he was an
engineer and a very brilliantengineer and entrepreneur and a
very brilliant engineer andentrepreneur.
I was diagnosed with ALS inkind of 2012 and really spent
about six to seven years, youknow, fighting ALS and it wasn't
sort of a fast journey but itwas slowish.
(16:53):
But you know it kind of in mymind it happened very fast, yeah
.
And in the journey ofnavigating ALS, you know it kind
of in my mind it happened veryfast, you know.
And in the journey ofnavigating ALS, you know a few
things.
One is because he was in India.
We just it took us a while toget diagnosed.
It took us about 18 months tounderstand what this was.
India has a massive neurologyshortage.
(17:14):
There's about 5,000neurologists in India, which is
the same number of neurologistsin Massachusetts, and so
understanding something likethis is very hard and you know,
for most of the world we don'thave access to sort of the great
academic medical hospitals wehave here in the US and the
specialty care, and so it tookhim a while to get diagnosed.
(17:36):
And then, you know, as a family, we spend so much time on the
internet looking for answers,seeing, finding support, and we
were.
Lorri Carey (17:49):
We struggled with sort of access to information
and access to expertise and andyeah, so the journey was very,
very it was I was a very darkplace for all of us as a family,
but it inspired Rune and itinspired me to create this
company to ALS and quicklybecome frustrated and feeling
(18:19):
helpless that they're notgetting the information that
they need or at the speed thatthey want, and so but you had a
skill set that you were able toactually take action, you know,
and build something with that.
So tell me a little bit about,like how you were able to
(18:41):
hearing this idea through andactually make it reality.
Vikram Bhaskaran (18:46):
Yeah, so the you know I was.
You know I was in SiliconValley at a company called
Pinterest.
You know was I helped sort ofbuild that platform and it was
an amazing, amazing endeavor.
But when my dad had ALS, I hadthis sort of like head
scratching moment where I feltso many of the brightest minds
(19:07):
of my generation were buildingthese beautiful apps like
Pinterest, airbnb, slack, uber.
You know all of the amazingcompanies Netflix, spotify,
healthy, happy people.
Have you know all of theamazing companies Netflix,
spotify, healthy, happy peoplehave you know, instantly on
their phone.
And so many of these companieswere built.
So many of these companies hadamazing user experiences and
(19:28):
really took time to understandtheir consumer.
But when it comes to health, itfelt like we were in the dark
ages.
You know, I was day jobinterest, surrounded by the
brightest minds in engineeringand design, and I'd go home
every night and I'd be in thislike dystopian world of Facebook
groups, misinformation onTikTok.
(19:49):
You know the doctor Googleproblem, where you have go down
these rabbit holes ofmisinformation.
The first thing you'll readwhen you go to Google is that,
like, als is a terminalcondition and you will die in
three to five years.
And so all of it felt either itwas like the information was
too superficial or it felt theexperiences were like nobody
(20:11):
really cared about the actualjourney of someone that was
navigating at these apps.
These services felt they werereally built in like the late
90s, early aughts.
And the other thing I justnoticed was the access to
experts.
I felt that so much of theinternet is about making people
(20:32):
and information available, butwhen it comes to healthcare
there's only a finite number ofexperts.
It takes a hard time toschedule an appointment with an
expert.
When you're meeting with aneurologist, you know, let's say
, for ALS, you have 20 minutesto get all your questions
answered.
You know my dad flew fromBangalore to UCSF to meet with
someone for 18 minutes and likeit was just crazy to me that you
(20:55):
know a three-day trip forsomeone with a terminal
condition.
You finally get to meet thisperson and you're rushed in and
out of the experience and wehave so many questions that were
unanswered.
So I took all of this together.
My basic question was can wetake all of the things we've
learned from consumer internetcompanies good design, good UI,
(21:16):
thoughtful, empatheticstorytelling, products that
actually think and look aroundthe corner and like, think about
the journeys, of what peopleare navigating and can we apply
it to this space that feels rawand where people just have so
little access?
You know, and the big kind ofhuman insight I had is like what
if we took the best neurologistin the world and the feeling of
(21:38):
being able to sit in front ofthem and get your questions
answered, put that on an app andmake it available universally?
You know, there's this oneneurologist that specifically
sparked the inspiration for thecompany.
Her name is Dr Jinzi Andrewsand she's at Columbia and she's
an incredible communicator.
And when I met her, I was waslike imagine if the world could
(21:58):
have Jinzy in their pocketwherever they needed, wherever
they wanted.
You know, yeah, empathy,compact and and advice.
And so that was the quest, andso I quit my job at Pinterest
and I knew that to do this well,I needed to get a team of
doctors and academic medicalexperts, as well as the tech and
(22:20):
engineering and design people,and so we have a nice motley
crew of public health folks,designers, engineers and lots of
doctors on the team who are allpart of this movement to build
the best place online for healthaccess and health information.
So we can all really say like,no more Dr Google and there's a
(22:41):
safe space to get access toexperts that we can trust and
also in a form factor that wecan consume.
No one wants to read whitepapers and watch law.
We just want answers toquestions and get back to life.
Right?
Lorri Carey (22:55):
You're right, you're right, you're right.
Yeah, great point.
Vikram Bhaskaran (22:58):
I founded Rune .
It's called Rune because it's a.
It's really a nod to my dad.
My dad's name was a RuneA-R-U-N and Roon is I wanted to
be short, easy to remember.
Yeah, a nod to the person thatinspired the company Rune.
Backwards is Nur, which islight in the time of darkness in
Arabic, and so the brand isvery much like a sanctuary, a
(23:21):
place of of light and hope andyeah.
So that that's just a littlebit about how I got started and
and and what we built yeah, Ilove that.
Lorri Carey (23:30):
And you know you were mentioning about having the
top neurologists or the topexperts as a part of this app.
You know, I was talking aboutjust the community and the
one-on-one Like.
I know you know what I'm goingthrough as far as other patients
talking to other patients,other caregivers talking to
(23:51):
caregivers.
But that's a great point,because even if you happen to
have one of those top alsexperts in your area and you go
to them, maybe they are anexpert in research, but maybe
(24:12):
not so much over here, you know,maybe not so much respiratory
or um or trials, or you know, Ifeel like over 21 years
physicians and I have met theyall have their little niche.
Yeah, I mean not that theycan't do everything, but when I
(24:32):
think of dr Bedlack, I thinkabout man.
That guy has got the besthopeful, inspiring attitude and
you know, in my mind, withoutbeing his patient, that's what I
associate him with.
And then you know, maybesomeone else he's the research
(24:52):
guy.
He can tell you exactly what isgoing on and where I should go.
So I like that, I like go.
So I'm like that, I'm like that.
Yeah, that makes sense.
Vikram Bhaskaran (25:03):
Yeah, and you know, to build on that, als is
so multidisciplinary, right.
I remember my dad having tofigure out how to kind of cobble
together OT and PT and speechpathology and people that can
think about like home renovation.
There's such a big cast ofpeople that you need to actually
(25:25):
tap into that.
The average person probably hasto have many, many appointments
.
You know, like at Mass General,you show up and it has this.
All the whole cast shows up,right, but most of the world we
don't have access to an entiremultidisciplinary team and so
part of the app is actually howdo I kind of create the feeling
(25:47):
of the best from the Duke clinic, the best from the Harvard MGH
clinic?
You know the caregiver thatknows how to think about travel
and mobility and have all ofthis in one place so that you,
as the patient or you personliving with ALS, you don't have
to think about travel andmobility and have all of this in
one place so that you, as thepatient or you person living
with ALS, you don't have tothink about going to all of
these different sources.
Yeah, because not only is ALS ahard, like the double tax of
(26:08):
having the condition and thenhaving to navigate.
All of the expertise is is isgreat Right so.
Lorri Carey (26:15):
Yeah, it's like a double whammy.
I it's like, man, am I notsuffering enough?
Am I not handed this hugeburden?
And that isn't enough.
And I have to go sortingthrough and I have to figure out
, and I have to figure outwhat's right, what's wrong, you
know, and all that, yeah,unnecessary on that point I've
often felt when you arenavigating something hard that's
(26:38):
health related.
Vikram Bhaskaran (26:39):
There's kind of three sources of knowledge.
There's like the medical rightand you want someone with an MD
or a PhD next to their nameteaching you stuff that's
medical.
There's the practical right howshould I set up my home?
What wheelchair should I get?
What is the best in my dad'scase, like the Hoyer lift, like
(27:01):
actually the best lift, and howdo we design that in our home in
India?
There are all these very, verypractical concerns.
And then there's the emotional,which is like how do I think
about mortality?
How should I communicate to mykids, in my dad's case, like
should we go on a big trip?
And like what does it mean toyou know, if you have limited
(27:21):
time on the planet?
And like how do you make yourdays meaningful?
And there's so much ofemotional stuff and most people
navigate all three.
Right, you want you want themedical, the emotional and the
practical, and it's very hardtoday to find all of those three
things in the same space.
You know you tend to yourcommunity for the emotional you
might tend to.
(27:42):
You might look at Reddit andfind like practical advice and
then you might go back to yourneurologist for the medical.
And so a big part of my visionis it can ruin be like one place
for all types of informationneeds, because a health journey
has all of those things and infact, sadly, the practical and
(28:02):
the emotional tends to weigh onyou more than just the medical,
because medicine only can do somuch.
At least with ALS, there's onlyso much you can do medically.
And so how do you live with?
This becomes kind of the mostimportant question you know.
Lorri Carey (28:16):
Yeah, yeah, very true.
So I want to talk about the app, because I was in a symposium
at the beginning of this weekand I was featuring the podcast
and you know it's so reallysurprising how many people are
like what's a podcast?
How do I?
How do I get to a podcast?
(28:37):
Oh no, I don't want to watchthat.
I'm like, well, you listen, um.
So can we just start from thebeginning for a listener who
doesn't have any apps?
that they interact with on theirphone or on their desktop.
Can we just say from beginningthis is how you start.
Vikram Bhaskaran (28:59):
Yeah, I love that.
You know, I think it's such animportant.
It's so easy to just assumepeople download an app.
Yes, right.
So I would say for any listener, the easiest thing to do is to
go to rooncom, r-o-o-n dot com.
I'll start by saying we have avery easy like desktop.
You're on a computer, you haveaccess to a laptop.
(29:23):
ROON COM website.
It's easily accessible, it'seasy to go find and you don't
need to download anything, right?
So that's like the first thingI'll say.
And when you go ROON , you can.
The reason we ask you to sign up, the reason it's a sign-up
experience, is we want to tailorthe experience based on who you
(29:43):
are.
Are you someone living with it?
Are you a caregiver?
Are you a friend?
Are you a healthcareprofessional that just wants to
learn?
And so it's a free sign-up.
It takes like less than threeminutes.
We ask you some basicinformation and we're not using
the information in any like totarget you with anything.
It's just basically so we canbetter serve you.
It takes three minutes to getthrough.
(30:05):
You can sign up with your email,with your phone number or
through like Facebook login andGmail login as well.
Once you're in the app.
There are kind of like fourspaces.
There is, if you have aquestion you're like I have a
burning question we have afeature called Ask Rune, kind of
(30:25):
like ChatGPT or Google.
You can just go there and writeyour question and the question
may be like what are the mostcommon symptoms of ALS?
Or it could be again, goingback to the practical, emotional
and the medical.
It could be something veryemotional, like I'm feeling
scared or I feel anxiety, andthen all the answers that we
give you are pulled from theexperts on our platform and we
(30:48):
have hundreds of experts acrossall the leading academic medical
hospitals, across people withdifferent specialties, so from
neurology to speech, languagepathology, to even mental health
and therapists who havespecialized in ALS.
And so these answers are notlike the internet at large.
They're all vetted, they're allhighly trusted and they're from
(31:12):
world experts or people withlived experiences.
But let's say you don't have aquestion.
You're like I don't have aquestion, I just want to learn
and I don't know what I don'tknow.
You know, in my case I had somany questions about genetics
but I didn't know what the rightquestions were.
So we you can go to somethingcalled kind of explore on the
app and the explore button hasall of the topics, and these
(31:34):
topics range from breathing tonutrition, to advocacy, to
mental health, to treatments,caregiver support, and we've
tried to build a little bit of amap of all of the most common
topics that you should learnabout and you can explore and
then browse content.
And then the last thing I'llsay is there's a place on the
(31:55):
app for experts.
Very often, as you said earlier, people have bed lack for a
certain reason, so we have aplace on the app for experts.
Very often, as you said earlier, like people have bedlock for a
certain reason, so we havebedlock on the platform and so
you can go and browse any expertand you can see their answers
to questions, like on theirprofile.
Yeah, right we have folks likeDr Merritt, who's the world
leader at Harvard, james Berry,ginzi, christina Fournier,
(32:21):
timothy Miller, who invented oneof the most important ALS
interventions, to nonprofitleaders, to folks like and I'm
just looking at the list hereLowman at UCSF.
So it's a full cast ofcharacters, from caregivers to
pulmonologists, geneticcounselors, pt, ot, mental
health, nursing, you know, andincluding the science and
(32:44):
research as well.
And then yeah, and then that'sit right?
It's super simple.
You can ask questions, you canbrowse, you can look at profiles
, and the whole app is centeredon short form video Q&A.
Lorri Carey (32:59):
Yeah, and if I can jump in, that's the key right
there is that this is video Veryshort, concise video clips that
you can watch.
That's what people are used toright now we're very mindful of
(33:29):
your time.
Vikram Bhaskaran (33:29):
We're respectful that you shouldn't be
watching a webinar, so all theanswers are short, they're meant
to give you something quick anddigestible, and there's also
read mode where on every answer,we have a little read button
where you can hit read and readan answer.
Now, if you have an Apple phoneand you are on the go and you
(33:50):
prefer, like a mobile device,search for Rune in your app
store and Rune will be one ofthe top hits and you can
download the app.
Lorri Carey (34:00):
Right and there's no cost to use it.
There's no cost to download itas well.
Vikram Bhaskaran (34:05):
Yeah, and you know, every time you have itched
to go to Google or chat GPD, Iwould say don't do that, but go
to Roon, because we have expertled, expert content and so
everything is empathetic, easydigest, easily digestible and
easy to use.
Lorri Carey (34:40):
Yeah, I love that.
And so, just like you weredescribing getting to a specific
physician or researcher that iswell known in our community and
you're in your 20s and you wantto connect with someone like
Brooke Evie, then you can typein her name and then you can see
all of the questions that shehas answered and you might
(35:03):
already think, ok, this issomeone that I can really relate
to, because I don't havechildren and I'm, you know, not
worrying about that right now.
I'm young.
I'm worried about, you know, doI have to live with my parents
forever and all that kind ofstuff.
And then so you get connectedand I know that you can follow
(35:24):
that particular person if theyare someone that you, you know,
are in line with yeah, I thinkthat's a really important.
Vikram Bhaskaran (35:32):
I think so much, so much of this whole
experience is like connectingwith a person.
That's relatable to your ownspecific way of receiving
information.
You know, in my case, like Idon't like doctors who are very
blunt and short.
I want that a slight like thenuance and the emotional way of
(35:53):
communicating with good bedsidemanner.
But some people are like, giveme the facts right.
And so we have all types ofcommunication styles on the
platform, almost by design, andwe also have community members
who have lived through ALS andbasically are bringing it
forward and giving theirinsights and suggestions and
(36:13):
wisdom, and lots of caregiversas well.
Yeah, yeah A lot of caregiverinsights, that are partners of
people with ALS, and they alsohave contributed tremendous
amount of knowledge and insightsand yeah, so it's all in this
one place.
Lorri Carey (36:30):
How do you even like with research updates?
How do you ensure that theinformation that you have in
your app is the most up to date?
Vikram Bhaskaran (36:45):
It's a really hard.
It's a good question.
It's a hard question as well.
One of the things we do is oneis we're continuously scouring
the internet for anything new.
Right, we have alerts set up.
We have if there's new ALSscience, research, anything, a
new type of standard of care, weget alerts and then we are
(37:06):
notified as a company.
And then we write questions andwe go back to our experts and
we say you know, hey, this newthing happened.
We need to either update orreplace this content.
So that's very top down and avery but an important kind of
active living breathing value.
We have that said because wehave so many experts.
(37:28):
Very often they themselves,they all have profiles.
They want to keep theirprofiles updated, and so our
medical team will email us andsay this study has changed or
this is a new protocol and Iwant to update my profile.
And because it's so easy tocreate content, you just shoot
an answer on the go.
And because it's so easy tocreate content, you just shoot
an answer on the goal.
(37:48):
We take that updated contentand then sometimes people in the
community and this is why Ilove the ALS community will
challenge us and say like hey,we recently got an email about
like something on a veteran'spage that was outdated and you
know we immediately saidapologize for this, let's keep
it updated, and then we go findthe answer.
So it's a little bit ofcommunity-driven,
(38:10):
doctor-reinforced and then usalso continuously making sure
the information is up to date.
Lorri Carey (38:16):
Yeah, it's a team effort.
Yeah, so, as far as where youare right now with the app, are
you happy with where you are?
Do you have goals or somethingthat you wish that you were able
, you know, to do as a part ofthis endeavor?
Vikram Bhaskaran (38:37):
yeah, you know I'm always dissatisfied with
the state of the.
That's a.
Uh, you know, I always look atit.
I'm like, ah, we can do so muchbetter, which is, I think, a
good, good thing.
And I think the, the placeswhere we're making big
investments, um, you know, oneis just making it even more
accessible.
(38:57):
I think accessibility I justremember my dad, for instance,
at some point he couldn'tactually move his arms, and so
it's so important to make it.
I think we're just we're kindof I'd give ourselves like four
on ten, right.
So, um, so, this quest to makeit more accessible, easier to
read, even things like thecolors it's a dark app, like how
do we make it like extremelyeasy to read?
(39:19):
So we're on a continuousjourney of making it more
accessible, readable, digestible.
Um, we want more experts aswell.
You know, I think think we havea lot of we skew very medical.
You know we have like all thebest neurologists and I think.
But so many people have told usthey'd like to hear from the
community and they want to havecommunity members contribute
(39:40):
content in a more seamless way,and so we're making big
investments in like, can anyonejust answer a question and can
you.
You learn from another memberof the community, so eventually
we'll be making investments inthe community as well.
Communicators, teaching in adigestible format and giving
(40:12):
people instant answers and aguide to any condition is like a
big broader public health need,and so we are doing.
If you go to RUNE, you'll see,like other conditions or other
health areas that are allpersonal to us and where we feel
there's a big gap in access tocare or access to information,
(40:33):
and so over the next few yearswe'll be, you know, really
spanning more health areas, evenbeyond ALS.
My roots are in ALS becausethat's where we started the
company.
So my goal is to always makesure that the ALS app is the
best experience for peoplenavigating ROON, and I want the
(40:55):
ALS app to be kind of the beaconfor anything else we build.
Lorri Carey (40:58):
Yeah, so right now, if I went on to the app and I
had a question, I type it in.
No videos come up.
Is there a way for me to submitthat question?
Vikram Bhaskaran (41:14):
Really good question.
And so today, if there's noanswers and that happens, right,
sometimes people ask a questionyeah, there's a flow to ask a
ask, ruin the question and then.
But the way you do it is youalmost give the answer a thumbs
down and then you can ask's a?
There's a flow to ask a ask,rune the question and then.
But the way you do it is youalmost give the answer a thumbs
down and then you can ask thequestion, and then that question
goes into our database, whichwe then go back to our experts
(41:36):
to ask.
So every day the app getsbetter because we find new
things that we couldn't predictthat someone asked.
And you know the whole systemis like this, living breathing.
You know, unlike like anon-profit, where once a quarter
they update things, or unlikelike webmd or google that might
look at something.
We're continuously updating thecontent.
Lorri Carey (41:58):
So like I went on there yesterday and I asked a
couple of questions and Icouldn't find anything on oh,
okay, shame on us, and then I'llmake sure we yeah, yeah, yeah,
no, let me just ask you and seeif, um, I'm missing something.
So one question I asked wasabout someone that had had ALS
(42:22):
for a long time, like is thereanyone that's had als for 20
years?
You know, like me, because,again, you know, I would want to
connect with them on certainthings and like.
Another question is survivor'sguilt, and that comes up a lot
in my podcast.
When I'm interviewing someonethat's had ALS for even six
(42:47):
years, seven years, 10 years,they always bring it up Do you
ever have survivor's guiltBecause all of the people that
you met on day one at supportgroup are now gone?
You know that kind of thing.
So, anyway, those are a coupleof that.
Vikram Bhaskaran (43:08):
Yeah, I think, firstly, those are two really
great areas and I'm happy tolike personally take them and
get some, get some content on onthose two topics, you know,
yeah, yeah, that'd be great.
Lorri Carey (43:21):
When you think where the app is right now and
you think of your dad, what doyou think he would say to you
now, having created this app?
Vikram Bhaskaran (43:37):
yeah, oh wow, that's a big, big question well
done yeah, you know, I think hewas an entrepreneur and he was a
builder and he was an engineer,and you know yeah.
I think I feel my dad would beproud that I didn't just
(43:58):
experience this as a caregiverand kind of move on with my life
um and I think he would beproud that this thing kind of
like really stopped me in mytracks and I decided, decided to
do something about.
you know, he was like that.
Weirdly, I think I got thatfrom him.
You know, my dad was not apassive person.
If something wasn't working, hewould.
He has a high agency, he would,even during with ALS, he built,
(44:20):
he was an engineer, so he builtlike ramps and he built his own
wheelchair accessible car andhe built a machine that would
pick him up and take him to thebathroom, and so he was a high
agency person where, um, and soI think like he would be happy
that I, I did something withthis.
uh, you know yeah and so I think, I think, yeah, I think he
(44:42):
would be proud, I hope he wouldbe proud oh, yeah, for sure,
yeah, yeah and I think, I thinkalso.
I think also the thing that hewould probably be especially
happy about is we grew up inIndia, and I think it's a
completely different experiencewhen you're outside of the
United States, in parts of theworld without access and so I
(45:03):
think the idea that we'rebringing some of the world
without access and so I thinkthe idea that we're bringing
some of the best Americandoctors and experts who study
ALS to any part of the worldwould be, I think, something you
would be happy about.
I think, if I judge this as arich person, western concierge
(45:25):
like you have to pay to getaccess to get something, and
like it's not available in indiaor other parts of the world, it
would have missed the buck.
So that's always a not star forme yeah, yeah.
Lorri Carey (45:39):
How do you fund the app?
How do you keep on going?
Vikram Bhaskaran (45:42):
I want to make the app free and as accessible
as possible and and so to dothat.
The kind of business model thatsupports that is, sponsorships,
where the app is sponsored andthen the content is free.
There are other things we coulddo where we partner with
hospital systems, we partnerwith ALS clinics, we partner
(46:03):
with insurance companies, sowe're exploring all of those in
parallel clinics.
We partner with insurancecompanies, so we're exploring
all of those in parallel.
But the goal is to make it asfree as available to people
navigating ALS and, you know,make it part of a benefits plan
or make it part of a you knowoffering from a hospital?
Yeah, it's, but healthcare isvery hard and, like there's so
many different, you know ways toget something to work, and so
(46:25):
we're in sort of activediscussions to do that.
Lorri Carey (46:28):
Mm-hmm.
Okay, as far as AI technology,how do you see that playing a
role in what you're doing rightnow?
Vikram Bhaskaran (46:41):
So when you ask a question on ROON, what we
are doing is our AI is kind oftaking all of the content and
giving you like an instant,multi-perspective answer summary
, and so we're already using AIin that way and it's kind of
magical, right.
Like any of our doctors are like, oh wow, you've stitched
(47:04):
together like Bedlack and Ginziand married Catherine Lohman
into a single answer, like for apre-AI, you would have to have
each and you'd have to go toeach person and get the answer
and have someone write up ananswer and editorialize it and
summarize it and fact check itLike in one instant.
We have AI doing that for you.
(47:25):
So the answer AI product islike instant.
We call it instant answersbecause you could, in one second
, get an answer from.
The other way in which we planto use AI is to really around
guidance and assistance, and so,you know, I think information
is one need, but very oftenpeople want help navigating.
(47:47):
You know, I think informationis one need, but very often
people want help navigating someaspect of ALS, and so we're
thinking of like how do we builda roadmap around making it even
easier?
You know, we think of like ROONshould be like your chief of
staff, right?
We're doing things for you thatmake your life easier outside
of just the information need,whether it's bookings, whether
it's like linking back toresources, whether it's helping
(48:08):
you buy something, and so that'svery aspirational, but we have
a whole roadmap around.
Can Rune be your best AIassistant, chief of staff for
navigating this and takes on theheavy lifting of planning
navigation that usually falls onfamilies.
(48:28):
And then the other big, justphilosophical AI question is you
know we don't want to replacedoctors and so, unlike chat, gpt
and perplexity, you know, weactually believe in a little bit
of a very old school, pre-ainotion of like there's nothing
that can be like thisinteraction.
Right, I'm looking at, we're ina room together and we're
(48:51):
having a conversation.
The essence of the app is anescaling doctor conversations or
doctor, um, medical expertknowledge, and so we never want
to subordinate or replace thejinxies or the Merritt's or the
James Berry's of the world.
It's actually inverse.
We were like how can AIhighlight their knowledge versus
(49:15):
replace or subordinate them,which is very different than
like Google ChatGPT.
They extract knowledge and theyjust give you the thing and a
doctor just becomes like asource.
You know.
Lorri Carey (49:29):
Right right right.
Vikram Bhaskaran (49:30):
Yeah, you know , we think one thing that will
be ai proof is a world expertwith empathy like human to human
, explaining something yeahnothing can actually replace
that, and there's a very humanneed for connection for someone
that legitimately cares, and sohow can we bottle that and make
(49:51):
sure that it enables that anddoesn't dilute the most
important thing, which is thethe doctor patient interaction,
you know?
Lorri Carey (49:58):
yeah, and you know, when you're talking right now,
I'm thinking Like how currentusing an app on your phone is,
and then how basic a one-on-oneconversation, trusting that
interaction, how like old schoolthat is, and so I think it's
(50:20):
really neat that you have an app, you have something state, stay
in the yard where you canaccess that warm, trusting
feeling of having someone thatknows what they're talking about
at a time that is so vulnerablein your life, you know yeah, I
(50:43):
think that's.
Vikram Bhaskaran (50:44):
That's the holy grail for us, which is
technology should be subservientto what humans do best, which
is like legitimately care andempathize and be compassionate,
and we almost give space andtime right to that.
Yeah, but that's a broader kindof philosophical question.
Lorri Carey (51:05):
Yeah, yeah, but that's a broader kind of
philosophical question.
Yeah, yeah, what's been themost rewarding feedback as a
result of putting this app outthere?
Vikram Bhaskaran (51:31):
I think what's been most rewarding is when I
hear two types online, um, thatthey are in facebook groups and
they're in reddit forums andthey are kind of just like
scouring the internet forknowledge, insights they're
trying to, and then they find usand then, like there's a like
drop the shoulders feeling ofokay, I finally found someplace
where I just have I don't haveto do the work and the work is
done for me, and the feedback weget a lot is like ROON feels
(51:54):
like a guide, you know, likepeople use the guide, like a
person, like a doctor friendthat has your back.
Someone once said that you havelike this, like doctor friend
that's not just a doctor butthat's guiding you, and like has
your back, and like that is theultimate um, you know, promise
of the service.
And when I hear that, I getreally happy because like the
(52:15):
persona of the brand and whatwe're trying to do is like a
doctor friend who has your back,you know yeah, and who gives
you space and time, and sothat's the feedback.
And then, on the other side, Ithink what is very heartwarming
is when doctors and ALS expertsexpress humility, when they say
(52:35):
like oh, I didn't even know.
Like this was what peoplenavigate, go through, and the
kinds of questions that your appanswers about the emotional,
the spiritual, spiritual, thepractical that, like, we would
never cover, you know, in aclinical setting.
Right, you're touching on allof that like, and like very
(52:55):
often neurologists would be.
Like I was humbled to learnthis, or I didn't even know
people asking this question, orI didn't know that, like, one of
the biggest concerns forsomeone when they leave my
clinic was, like, like you knowhow to navigate, genetic testing
is such a complex question, forinstance, and I didn't even
know that was the number onestress for someone that might
(53:17):
have left my clinic.
And so I think that is veryinteresting because, like, even
for clinicians, they suddenlyhave a window into, like, the
entire spectrum of experience ofals, way beyond the medical
side yeah and they're almostforced to up their game a little
bit because they know that,like wow, there's an amazing
(53:38):
communicator who's in anotherplace, who's able to talk about
end of life or mortality in thisexpansive, beautiful way.
And hey, I'm just like tellingthem about new dexa, you know
right, yeah, about a specifictreatment, and so I think many
of them have told us that runelike allows like ups their game
(53:59):
a little bit because theysuddenly see in one space like
all the best communicators,which I think is better for the
whole field because, you know,it makes the provider base
better as well and moreempathetic.
Lorri Carey (54:12):
Yeah, yeah, true, it's kind of like just having a
conversation over a cup ofcoffee with one of those experts
, right?
So you don't have like you'renot following your computer
screen and entering all the data.
You allow again, again, timeand space for new conversation
(54:37):
and new ideas and new thoughtsbetween the two of you.
Vikram Bhaskaran (54:44):
I have so much empathy for them.
Their lives are crazy.
Lorri Carey (54:48):
Yeah.
Vikram Bhaskaran (54:50):
One of the neurologists I won't name like
doesn't even have an admin at aleading academic center and so
scheduling their own ALSmeetings and and basically is
like completely under undersiege, understaffed, and so this
platform gives someone that'slike rushing between 12 minute
sessions, like the space toactually be themselves and to
(55:12):
pause and say why did I get it,why did I get into medicine?
What is my philosophy of care,you know?
And that spaciousness is reallyimportant.
Lorri Carey (55:20):
Yeah.
Vikram Bhaskaran (55:21):
The last thing I'll say sorry, this is no, no,
no, it's like.
The other thing I learned isthe importance of like not just
neurology but um pulmonology.
And the other very interestingpiece of the platform is like
the neurologist will learn aboutlike respiratory interventions
that actually end up extendinglife.
(55:43):
You know, way more thanactually any specific um
treatment or anything that canslow the progression of the
disease.
So it's actually been veryheartening to see different
disciplines kind of like learnfrom each other and people
outside of the academic medicalcenters who don't treat that
many ALS patients like, suddenlylook at the app and reference
(56:06):
and know what the true standardof care should be.
You know.
Lorri Carey (56:12):
Well, I love all that you and your team have done
.
I think this is an incredibleresource and you know, because
I've been around for a while, Iget a lot of calls.
I'll probably get a call a weekfrom someone that's just
diagnosed, because they hearthat I've had it for 21 years
(56:34):
and of course, they want to know, hey, what do you do, what do
you eat, what do you suggest?
Because I want to be a longtimer as well, and so this is
something you know, that I tellpeople about that they might not
have a question when I'm on thephone with them, and they're
going to have a different onewhen we hang up and along the
(56:55):
journey, and so this is a greatresource for everyone, no matter
what stage they're in.
And to my listeners, I will puta link in the show notes that
you can go directly to the app,and it's at roon.
com, r-o-o-n.
com.
Of course, I'll put a directlink in the show notes that you
(57:19):
can find on Facebook and thewebsite, both at I'm Dying to
Tell you Podcast.
Okay, I have one more question.
So, vikram, what are you dyingto tell us?
Vikram Bhaskaran (57:40):
I am dying to tell you that there is a space
called ROON that there is aspace called ROON, R-O-O-N.
com, and ALS is a very, veryhard journey.
It's hard, it's complex, it'sthe hardest thing that anyone
can ever go through for thefamilies, but there is a place
(58:01):
on the internet where peoplelike yourself can find comfort,
can feel less alone, and there'sa lot of hope in this community
, more in this community thanany other community that I've
been in.
A lot of hope, a lot ofstrength, a lot of compassion
(58:23):
and I've never seen a group ofpeople more motivated to kind of
change the world and shape thething that is affecting them.
And my inspiration comes fromyou, the listeners.
Lorri Carey (58:39):
Thank you so much.
I really appreciate you and itwas great meeting you.
Hopefully we'll get to hug inperson one day.
Vikram Bhaskaran (58:47):
No, thank you so much, laurie, and you
yourself are kind of an amazinghuman.
I I would love to just atanother time get to know you
better and yeah, yeah.
Thank you for doing what you'redoing and I think like, yeah,
you're super inspiring.
Lorri Carey (59:04):
Thank you, thank you, thank you again.
(01:01:06):
Again, Vikram, I reallyappreciate you and your entire
team for bringing out ROON toall of us in the ALS community.
Okay, to my listeners.
Thank you for being here and,like I said, I will put links in
the show notes on the websiteand Facebook page, both at I'm
(01:01:32):
Dying to Tell you podcast.
If you are just finding thispodcast, you know someone that
can benefit from ROON.
Please share this episode.
(01:01:56):
I mean, anytime there is anopportunity to lessen the burden
of ALS with a family, we simplycannot pass it up.
So I know this can help a lotof people and answer a lot of
questions Either they have nowor they're going to have in the
(01:02:20):
future.
So thank you for doing that.
Okay, thank you so much forbeing here.
Until next time, know you areloved and not alone.
Thanks for listening.
Thank you, boss.
(01:03:08):
Come on, boss, come on.
Is that right?
Okay, okay.
Hi, I'm Lorri, your host of I'm Dying to Tell you
Thank you for being here.
I am super happy that you arechiming in to this episode.
It's going to be if you are inthe ALS community or you know
(00:24):
someone that is, or if you justwant to hear an amazing story of
someone who is honoring theirfather by building something
incredible for a specialcommunity, than listening.
(00:48):
So one of the things that Ihave learned over the past 21
years living with ALS is howincredible and how powerful it
is to do a couple of things.
Number one to gather withothers who are living with ALS
(01:18):
and to be able to share ourexperiences with each other is
one.
And the second one is the veryunique opportunity when people
are living with ALS, get togather with an expert in the
(01:42):
field, whether you're at asymposium, at a conference, at a
gala and you're able to meet ascientist, a physician, a
researcher, someone that iscommitted and really involved in
(02:03):
the ALS world.
It's really a great opportunityand, like I said, a very unique
opportunity to chat with themand hear what's going on, what
they've learned, updates, and soone of the things that I
absolutely love about my guesttoday is that he has created
(02:31):
something that gives you anopportunity very similar to both
of those, and I'm going to letVikram tell most of his story.
Going to let Vikram tell mostof his story, but real quick.
(02:51):
He was a caregiver for his dadwho had ALS, and through
Vikram's experience he foundthat finding a community and
navigating medical, gainingmedical information from where
they were in India andeverywhere, could be
dramatically improved, and soVikram and his team have created
(03:17):
something very unique andaccessible to the ALS community,
and I am so excited to bringhim on to talk about his
inspiration for creating Roon ,and I want him to walk step by
(03:38):
step Roon Rune works.
I know he's going to make itvery easy for you to check out.
(13:48):
hey lori hi, how are you?
Vikram Bhaskaran (13:50):
fine, we're able to catch up finally yeah, I
know, thank you for having youknow.
I really appreciate what you doand uh, yeah, and remind me
where are you based um.
Lorri Carey (14:03):
I am in cincinnati ohio oh, amazing, amazing.
Vikram Bhaskaran (14:06):
Okay, I hope I at some point we get to meet
either in new york somewhere,yeah, yeah, that would be great.
Lorri Carey (14:13):
That'd be great.
I'd love that.
All right, all right.
Well, I'm so happy to finallycatch up with you.
You know I've been watching, uh, what you've been doing with
the rune app and and I justthink it's such a valuable
resource even me, who has hadals for 21 years, years like I
(14:39):
love it, and you know I'velearned through this podcast the
power of hearing directly fromlike that is just worth so much.
(15:03):
So, right off the bat, thank youfor putting this together and
getting it out into ourcommunity.
I really really appreciate it.
Vikram Bhaskaran (15:15):
Thank you for saying that and I'm'm very
excited to chat and appreciateyou reaching out to highlight
our work.
Lorri Carey (15:24):
So I know that you developed this app because you
had a special place in yourheart from your own experience
with ALS with your dad, so tellme a little bit about your dad.
Vikram Bhaskaran (15:43):
Yeah, I'll, you know, I'll tell you about my
dad, you know, before he hadALS so important sometimes to
kind of remember people.
You know the.
So my dad was born in India, inBangalore, actually.
He was born in a town calledMadurai, which is in a state
called Tamil Nadu.
Uh, but we are from Bangalore,which is in South India, and my
(16:06):
dad was an entrepreneur.
He was a tennis player.
Uh, he was an incrediblestoryteller, um, very big
personality, uh, gregarious, andloved sort of really everything
about life.
Yeah, he was the person youwould kind of gravitate towards
(16:26):
in a party or in any sort ofsocial setting.
Lorri Carey (16:29):
Oh, I love that.
Vikram Bhaskaran (16:31):
Yeah, and he was, you know, he was an
engineer and a very brilliantengineer and entrepreneur and a
very brilliant engineer andentrepreneur.
I was diagnosed with ALS inkind of 2012 and really spent
about six to seven years, youknow, fighting ALS and it wasn't
sort of a fast journey but itwas slowish.
(16:53):
But you know it kind of in mymind it happened very fast, yeah
.
And in the journey ofnavigating ALS, you know it kind
of in my mind it happened veryfast, you know.
And in the journey ofnavigating ALS, you know a few
things.
One is because he was in India.
We just it took us a while toget diagnosed.
It took us about 18 months tounderstand what this was.
India has a massive neurologyshortage.
(17:14):
There's about 5,000neurologists in India, which is
the same number of neurologistsin Massachusetts, and so
understanding something likethis is very hard and you know,
for most of the world we don'thave access to sort of the great
academic medical hospitals wehave here in the US and the
specialty care, and so it tookhim a while to get diagnosed.
(17:36):
And then, you know, as a family, we spend so much time on the
internet looking for answers,seeing, finding support, and we
were.
Lorri Carey (17:49):
We struggled with sort of access to information
and access to expertise and andyeah, so the journey was very,
very it was I was a very darkplace for all of us as a family,
but it inspired Rune and itinspired me to create this
company to ALS and quicklybecome frustrated and feeling
(18:19):
helpless that they're notgetting the information that
they need or at the speed thatthey want, and so but you had a
skill set that you were able toactually take action, you know,
and build something with that.
So tell me a little bit about,like how you were able to
(18:41):
hearing this idea through andactually make it reality.
Vikram Bhaskaran (18:46):
Yeah, so the you know I was.
You know I was in SiliconValley at a company called
Pinterest.
You know was I helped sort ofbuild that platform and it was
an amazing, amazing endeavor.
But when my dad had ALS, I hadthis sort of like head
scratching moment where I feltso many of the brightest minds
(19:07):
of my generation were buildingthese beautiful apps like
Pinterest, airbnb, slack, uber.
You know all of the amazingcompanies Netflix, spotify,
healthy, happy people.
Have you know all of theamazing companies Netflix,
spotify, healthy, happy peoplehave you know, instantly on
their phone.
And so many of these companieswere built.
So many of these companies hadamazing user experiences and
(19:28):
really took time to understandtheir consumer.
But when it comes to health, itfelt like we were in the dark
ages.
You know, I was day jobinterest, surrounded by the
brightest minds in engineeringand design, and I'd go home
every night and I'd be in thislike dystopian world of Facebook
groups, misinformation onTikTok.
(19:49):
You know the doctor Googleproblem, where you have go down
these rabbit holes ofmisinformation.
The first thing you'll readwhen you go to Google is that,
like, als is a terminalcondition and you will die in
three to five years.
And so all of it felt either itwas like the information was
too superficial or it felt theexperiences were like nobody
(20:11):
really cared about the actualjourney of someone that was
navigating at these apps.
These services felt they werereally built in like the late
90s, early aughts.
And the other thing I justnoticed was the access to
experts.
I felt that so much of theinternet is about making people
(20:32):
and information available, butwhen it comes to healthcare
there's only a finite number ofexperts.
It takes a hard time toschedule an appointment with an
expert.
When you're meeting with aneurologist, you know, let's say
, for ALS, you have 20 minutesto get all your questions
answered.
You know my dad flew fromBangalore to UCSF to meet with
someone for 18 minutes and likeit was just crazy to me that you
(20:55):
know a three-day trip forsomeone with a terminal
condition.
You finally get to meet thisperson and you're rushed in and
out of the experience and wehave so many questions that were
unanswered.
So I took all of this together.
My basic question was can wetake all of the things we've
learned from consumer internetcompanies good design, good UI,
(21:16):
thoughtful, empatheticstorytelling, products that
actually think and look aroundthe corner and like, think about
the journeys, of what peopleare navigating and can we apply
it to this space that feels rawand where people just have so
little access?
You know, and the big kind ofhuman insight I had is like what
if we took the best neurologistin the world and the feeling of
(21:38):
being able to sit in front ofthem and get your questions
answered, put that on an app andmake it available universally?
You know, there's this oneneurologist that specifically
sparked the inspiration for thecompany.
Her name is Dr Jinzi Andrewsand she's at Columbia and she's
an incredible communicator.
And when I met her, I was waslike imagine if the world could
(21:58):
have Jinzy in their pocketwherever they needed, wherever
they wanted.
You know, yeah, empathy,compact and and advice.
And so that was the quest, andso I quit my job at Pinterest
and I knew that to do this well,I needed to get a team of
doctors and academic medicalexperts, as well as the tech and
(22:20):
engineering and design people,and so we have a nice motley
crew of public health folks,designers, engineers and lots of
doctors on the team who are allpart of this movement to build
the best place online for healthaccess and health information.
So we can all really say like,no more Dr Google and there's a
(22:41):
safe space to get access toexperts that we can trust and
also in a form factor that wecan consume.
No one wants to read whitepapers and watch law.
We just want answers toquestions and get back to life.
Right?
Lorri Carey (22:55):
You're right, you're right, you're right.
Yeah, great point.
Vikram Bhaskaran (22:58):
I founded Rune .
It's called Rune because it's a.
It's really a nod to my dad.
My dad's name was a RuneA-R-U-N and Roon is I wanted to
be short, easy to remember.
Yeah, a nod to the person thatinspired the company Rune.
Backwards is Nur, which islight in the time of darkness in
Arabic, and so the brand isvery much like a sanctuary, a
(23:21):
place of of light and hope andyeah.
So that that's just a littlebit about how I got started and
and and what we built yeah, Ilove that.
Lorri Carey (23:30):
And you know you were mentioning about having the
top neurologists or the topexperts as a part of this app.
You know, I was talking aboutjust the community and the
one-on-one Like.
I know you know what I'm goingthrough as far as other patients
talking to other patients,other caregivers talking to
(23:51):
caregivers.
But that's a great point,because even if you happen to
have one of those top alsexperts in your area and you go
to them, maybe they are anexpert in research, but maybe
(24:12):
not so much over here, you know,maybe not so much respiratory
or um or trials, or you know, Ifeel like over 21 years
physicians and I have met theyall have their little niche.
Yeah, I mean not that theycan't do everything, but when I
(24:32):
think of dr Bedlack, I thinkabout man.
That guy has got the besthopeful, inspiring attitude and
you know, in my mind, withoutbeing his patient, that's what I
associate him with.
And then you know, maybesomeone else he's the research
(24:52):
guy.
He can tell you exactly what isgoing on and where I should go.
So I like that, I like go.
So I'm like that, I'm like that.
Yeah, that makes sense.
Vikram Bhaskaran (25:03):
Yeah, and you know, to build on that, als is
so multidisciplinary, right.
I remember my dad having tofigure out how to kind of cobble
together OT and PT and speechpathology and people that can
think about like home renovation.
There's such a big cast ofpeople that you need to actually
(25:25):
tap into that.
The average person probably hasto have many, many appointments
.
You know, like at Mass General,you show up and it has this.
All the whole cast shows up,right, but most of the world we
don't have access to an entiremultidisciplinary team and so
part of the app is actually howdo I kind of create the feeling
(25:47):
of the best from the Duke clinic, the best from the Harvard MGH
clinic?
You know the caregiver thatknows how to think about travel
and mobility and have all ofthis in one place so that you,
as the patient or you personliving with ALS, you don't have
to think about travel andmobility and have all of this in
one place so that you, as thepatient or you person living
with ALS, you don't have tothink about going to all of
these different sources.
Yeah, because not only is ALS ahard, like the double tax of
(26:08):
having the condition and thenhaving to navigate.
All of the expertise is is isgreat Right so.
Lorri Carey (26:15):
Yeah, it's like a double whammy.
I it's like, man, am I notsuffering enough?
Am I not handed this hugeburden?
And that isn't enough.
And I have to go sortingthrough and I have to figure out
, and I have to figure outwhat's right, what's wrong, you
know, and all that, yeah,unnecessary on that point I've
often felt when you arenavigating something hard that's
(26:38):
health related.
Vikram Bhaskaran (26:39):
There's kind of three sources of knowledge.
There's like the medical rightand you want someone with an MD
or a PhD next to their nameteaching you stuff that's
medical.
There's the practical right howshould I set up my home?
What wheelchair should I get?
What is the best in my dad'scase, like the Hoyer lift, like
(27:01):
actually the best lift, and howdo we design that in our home in
India?
There are all these very, verypractical concerns.
And then there's the emotional,which is like how do I think
about mortality?
How should I communicate to mykids, in my dad's case, like
should we go on a big trip?
And like what does it mean toyou know, if you have limited
(27:21):
time on the planet?
And like how do you make yourdays meaningful?
And there's so much ofemotional stuff and most people
navigate all three.
Right, you want you want themedical, the emotional and the
practical, and it's very hardtoday to find all of those three
things in the same space.
You know you tend to yourcommunity for the emotional you
might tend to.
(27:42):
You might look at Reddit andfind like practical advice and
then you might go back to yourneurologist for the medical.
And so a big part of my visionis it can ruin be like one place
for all types of informationneeds, because a health journey
has all of those things and infact, sadly, the practical and
(28:02):
the emotional tends to weigh onyou more than just the medical,
because medicine only can do somuch.
At least with ALS, there's onlyso much you can do medically.
And so how do you live with?
This becomes kind of the mostimportant question you know.
Lorri Carey (28:16):
Yeah, yeah, very true.
So I want to talk about the app, because I was in a symposium
at the beginning of this weekand I was featuring the podcast
and you know it's so reallysurprising how many people are
like what's a podcast?
How do I?
How do I get to a podcast?
(28:37):
Oh no, I don't want to watchthat.
I'm like, well, you listen, um.
So can we just start from thebeginning for a listener who
doesn't have any apps?
that they interact with on theirphone or on their desktop.
Can we just say from beginningthis is how you start.
Vikram Bhaskaran (28:59):
Yeah, I love that.
You know, I think it's such animportant.
It's so easy to just assumepeople download an app.
Yes, right.
So I would say for any listener, the easiest thing to do is to
go to rooncom, r-o-o-n dot com.
I'll start by saying we have avery easy like desktop.
You're on a computer, you haveaccess to a laptop.
(29:23):
ROON COM website.
It's easily accessible, it'seasy to go find and you don't
need to download anything, right?
So that's like the first thingI'll say.
And when you go ROON , you can.
The reason we ask you to sign up, the reason it's a sign-up
experience, is we want to tailorthe experience based on who you
(29:43):
are.
Are you someone living with it?
Are you a caregiver?
Are you a friend?
Are you a healthcareprofessional that just wants to
learn?
And so it's a free sign-up.
It takes like less than threeminutes.
We ask you some basicinformation and we're not using
the information in any like totarget you with anything.
It's just basically so we canbetter serve you.
It takes three minutes to getthrough.
(30:05):
You can sign up with your email,with your phone number or
through like Facebook login andGmail login as well.
Once you're in the app.
There are kind of like fourspaces.
There is, if you have aquestion you're like I have a
burning question we have afeature called Ask Rune, kind of
(30:25):
like ChatGPT or Google.
You can just go there and writeyour question and the question
may be like what are the mostcommon symptoms of ALS?
Or it could be again, goingback to the practical, emotional
and the medical.
It could be something veryemotional, like I'm feeling
scared or I feel anxiety, andthen all the answers that we
give you are pulled from theexperts on our platform and we
(30:48):
have hundreds of experts acrossall the leading academic medical
hospitals, across people withdifferent specialties, so from
neurology to speech, languagepathology, to even mental health
and therapists who havespecialized in ALS.
And so these answers are notlike the internet at large.
They're all vetted, they're allhighly trusted and they're from
(31:12):
world experts or people withlived experiences.
But let's say you don't have aquestion.
You're like I don't have aquestion, I just want to learn
and I don't know what I don'tknow.
You know, in my case I had somany questions about genetics
but I didn't know what the rightquestions were.
So we you can go to somethingcalled kind of explore on the
app and the explore button hasall of the topics, and these
(31:34):
topics range from breathing tonutrition, to advocacy, to
mental health, to treatments,caregiver support, and we've
tried to build a little bit of amap of all of the most common
topics that you should learnabout and you can explore and
then browse content.
And then the last thing I'llsay is there's a place on the
(31:55):
app for experts.
Very often, as you said earlier, people have bed lack for a
certain reason, so we have aplace on the app for experts.
Very often, as you said earlier, like people have bedlock for a
certain reason, so we havebedlock on the platform and so
you can go and browse any expertand you can see their answers
to questions, like on theirprofile.
Yeah, right we have folks likeDr Merritt, who's the world
leader at Harvard, james Berry,ginzi, christina Fournier,
(32:21):
timothy Miller, who invented oneof the most important ALS
interventions, to nonprofitleaders, to folks like and I'm
just looking at the list hereLowman at UCSF.
So it's a full cast ofcharacters, from caregivers to
pulmonologists, geneticcounselors, pt, ot, mental
health, nursing, you know, andincluding the science and
(32:44):
research as well.
And then yeah, and then that'sit right?
It's super simple.
You can ask questions, you canbrowse, you can look at profiles
, and the whole app is centeredon short form video Q&A.
Lorri Carey (32:59):
Yeah, and if I can jump in, that's the key right
there is that this is video Veryshort, concise video clips that
you can watch.
That's what people are used toright now we're very mindful of
(33:29):
your time.
Vikram Bhaskaran (33:29):
We're respectful that you shouldn't be
watching a webinar, so all theanswers are short, they're meant
to give you something quick anddigestible, and there's also
read mode where on every answer,we have a little read button
where you can hit read and readan answer.
Now, if you have an Apple phoneand you are on the go and you
(33:50):
prefer, like a mobile device,search for Rune in your app
store and Rune will be one ofthe top hits and you can
download the app.
Lorri Carey (34:00):
Right and there's no cost to use it.
There's no cost to download itas well.
Vikram Bhaskaran (34:05):
Yeah, and you know, every time you have itched
to go to Google or chat GPD, Iwould say don't do that, but go
to Roon, because we have expertled, expert content and so
everything is empathetic, easydigest, easily digestible and
easy to use.
Lorri Carey (34:40):
Yeah, I love that.
And so, just like you weredescribing getting to a specific
physician or researcher that iswell known in our community and
you're in your 20s and you wantto connect with someone like
Brooke Evie, then you can typein her name and then you can see
all of the questions that shehas answered and you might
(35:03):
already think, ok, this issomeone that I can really relate
to, because I don't havechildren and I'm, you know, not
worrying about that right now.
I'm young.
I'm worried about, you know, doI have to live with my parents
forever and all that kind ofstuff.
And then so you get connectedand I know that you can follow
(35:24):
that particular person if theyare someone that you, you know,
are in line with yeah, I thinkthat's a really important.
Vikram Bhaskaran (35:32):
I think so much, so much of this whole
experience is like connectingwith a person.
That's relatable to your ownspecific way of receiving
information.
You know, in my case, like Idon't like doctors who are very
blunt and short.
I want that a slight like thenuance and the emotional way of
(35:53):
communicating with good bedsidemanner.
But some people are like, giveme the facts right.
And so we have all types ofcommunication styles on the
platform, almost by design, andwe also have community members
who have lived through ALS andbasically are bringing it
forward and giving theirinsights and suggestions and
(36:13):
wisdom, and lots of caregiversas well.
Yeah, yeah A lot of caregiverinsights, that are partners of
people with ALS, and they alsohave contributed tremendous
amount of knowledge and insightsand yeah, so it's all in this
one place.
Lorri Carey (36:30):
How do you even like with research updates?
How do you ensure that theinformation that you have in
your app is the most up to date?
Vikram Bhaskaran (36:45):
It's a really hard.
It's a good question.
It's a hard question as well.
One of the things we do is oneis we're continuously scouring
the internet for anything new.
Right, we have alerts set up.
We have if there's new ALSscience, research, anything, a
new type of standard of care, weget alerts and then we are
(37:06):
notified as a company.
And then we write questions andwe go back to our experts and
we say you know, hey, this newthing happened.
We need to either update orreplace this content.
So that's very top down and avery but an important kind of
active living breathing value.
We have that said because wehave so many experts.
(37:28):
Very often they themselves,they all have profiles.
They want to keep theirprofiles updated, and so our
medical team will email us andsay this study has changed or
this is a new protocol and Iwant to update my profile.
And because it's so easy tocreate content, you just shoot
an answer on the go.
And because it's so easy tocreate content, you just shoot
an answer on the goal.
(37:48):
We take that updated contentand then sometimes people in the
community and this is why Ilove the ALS community will
challenge us and say like hey,we recently got an email about
like something on a veteran'spage that was outdated and you
know we immediately saidapologize for this, let's keep
it updated, and then we go findthe answer.
So it's a little bit ofcommunity-driven,
(38:10):
doctor-reinforced and then usalso continuously making sure
the information is up to date.
Lorri Carey (38:16):
Yeah, it's a team effort.
Yeah, so, as far as where youare right now with the app, are
you happy with where you are?
Do you have goals or somethingthat you wish that you were able
, you know, to do as a part ofthis endeavor?
Vikram Bhaskaran (38:37):
yeah, you know I'm always dissatisfied with
the state of the.
That's a.
Uh, you know, I always look atit.
I'm like, ah, we can do so muchbetter, which is, I think, a
good, good thing.
And I think the, the placeswhere we're making big
investments, um, you know, oneis just making it even more
accessible.
(38:57):
I think accessibility I justremember my dad, for instance,
at some point he couldn'tactually move his arms, and so
it's so important to make it.
I think we're just we're kindof I'd give ourselves like four
on ten, right.
So, um, so, this quest to makeit more accessible, easier to
read, even things like thecolors it's a dark app, like how
do we make it like extremelyeasy to read?
(39:19):
So we're on a continuousjourney of making it more
accessible, readable, digestible.
Um, we want more experts aswell.
You know, I think think we havea lot of we skew very medical.
You know we have like all thebest neurologists and I think.
But so many people have told usthey'd like to hear from the
community and they want to havecommunity members contribute
(39:40):
content in a more seamless way,and so we're making big
investments in like, can anyonejust answer a question and can
you.
You learn from another memberof the community, so eventually
we'll be making investments inthe community as well.
Communicators, teaching in adigestible format and giving
(40:12):
people instant answers and aguide to any condition is like a
big broader public health need,and so we are doing.
If you go to RUNE, you'll see,like other conditions or other
health areas that are allpersonal to us and where we feel
there's a big gap in access tocare or access to information,
(40:33):
and so over the next few yearswe'll be, you know, really
spanning more health areas, evenbeyond ALS.
My roots are in ALS becausethat's where we started the
company.
So my goal is to always makesure that the ALS app is the
best experience for peoplenavigating ROON, and I want the
(40:55):
ALS app to be kind of the beaconfor anything else we build.
Lorri Carey (40:58):
Yeah, so right now, if I went on to the app and I
had a question, I type it in.
No videos come up.
Is there a way for me to submitthat question?
Vikram Bhaskaran (41:14):
Really good question.
And so today, if there's noanswers and that happens, right,
sometimes people ask a questionyeah, there's a flow to ask a
ask, ruin the question and then.
But the way you do it is youalmost give the answer a thumbs
down and then you can ask's a?
There's a flow to ask a ask,rune the question and then.
But the way you do it is youalmost give the answer a thumbs
down and then you can ask thequestion, and then that question
goes into our database, whichwe then go back to our experts
(41:36):
to ask.
So every day the app getsbetter because we find new
things that we couldn't predictthat someone asked.
And you know the whole systemis like this, living breathing.
You know, unlike like anon-profit, where once a quarter
they update things, or unlikelike webmd or google that might
look at something.
We're continuously updating thecontent.
Lorri Carey (41:58):
So like I went on there yesterday and I asked a
couple of questions and Icouldn't find anything on oh,
okay, shame on us, and then I'llmake sure we yeah, yeah, yeah,
no, let me just ask you and seeif, um, I'm missing something.
So one question I asked wasabout someone that had had ALS
(42:22):
for a long time, like is thereanyone that's had als for 20
years?
You know, like me, because,again, you know, I would want to
connect with them on certainthings and like.
Another question is survivor'sguilt, and that comes up a lot
in my podcast.
When I'm interviewing someonethat's had ALS for even six
(42:47):
years, seven years, 10 years,they always bring it up Do you
ever have survivor's guiltBecause all of the people that
you met on day one at supportgroup are now gone?
You know that kind of thing.
So, anyway, those are a coupleof that.
Vikram Bhaskaran (43:08):
Yeah, I think, firstly, those are two really
great areas and I'm happy tolike personally take them and
get some, get some content on onthose two topics, you know,
yeah, yeah, that'd be great.
Lorri Carey (43:21):
When you think where the app is right now and
you think of your dad, what doyou think he would say to you
now, having created this app?
Vikram Bhaskaran (43:37):
yeah, oh wow, that's a big, big question well
done yeah, you know, I think hewas an entrepreneur and he was a
builder and he was an engineer,and you know yeah.
I think I feel my dad would beproud that I didn't just
(43:58):
experience this as a caregiverand kind of move on with my life
um and I think he would beproud that this thing kind of
like really stopped me in mytracks and I decided, decided to
do something about.
you know, he was like that.
Weirdly, I think I got thatfrom him.
You know, my dad was not apassive person.
If something wasn't working, hewould.
He has a high agency, he would,even during with ALS, he built,
(44:20):
he was an engineer, so he builtlike ramps and he built his own
wheelchair accessible car andhe built a machine that would
pick him up and take him to thebathroom, and so he was a high
agency person where, um, and soI think like he would be happy
that I, I did something withthis.
uh, you know yeah and so I think, I think, yeah, I think he
(44:42):
would be proud, I hope he wouldbe proud oh, yeah, for sure,
yeah, yeah and I think, I thinkalso.
I think also the thing that hewould probably be especially
happy about is we grew up inIndia, and I think it's a
completely different experiencewhen you're outside of the
United States, in parts of theworld without access and so I
(45:03):
think the idea that we'rebringing some of the world
without access and so I thinkthe idea that we're bringing
some of the best Americandoctors and experts who study
ALS to any part of the worldwould be, I think, something you
would be happy about.
I think, if I judge this as arich person, western concierge
(45:25):
like you have to pay to getaccess to get something, and
like it's not available in indiaor other parts of the world, it
would have missed the buck.
So that's always a not star forme yeah, yeah.
Lorri Carey (45:39):
How do you fund the app?
How do you keep on going?
Vikram Bhaskaran (45:42):
I want to make the app free and as accessible
as possible and and so to dothat.
The kind of business model thatsupports that is, sponsorships,
where the app is sponsored andthen the content is free.
There are other things we coulddo where we partner with
hospital systems, we partnerwith ALS clinics, we partner
(46:03):
with insurance companies, sowe're exploring all of those in
parallel clinics.
We partner with insurancecompanies, so we're exploring
all of those in parallel.
But the goal is to make it asfree as available to people
navigating ALS and, you know,make it part of a benefits plan
or make it part of a you knowoffering from a hospital?
Yeah, it's, but healthcare isvery hard and, like there's so
many different, you know ways toget something to work, and so
(46:25):
we're in sort of activediscussions to do that.
Lorri Carey (46:28):
Mm-hmm.
Okay, as far as AI technology,how do you see that playing a
role in what you're doing rightnow?
Vikram Bhaskaran (46:41):
So when you ask a question on ROON, what we
are doing is our AI is kind oftaking all of the content and
giving you like an instant,multi-perspective answer summary
, and so we're already using AIin that way and it's kind of
magical, right.
Like any of our doctors are like, oh wow, you've stitched
(47:04):
together like Bedlack and Ginziand married Catherine Lohman
into a single answer, like for apre-AI, you would have to have
each and you'd have to go toeach person and get the answer
and have someone write up ananswer and editorialize it and
summarize it and fact check itLike in one instant.
We have AI doing that for you.
(47:25):
So the answer AI product islike instant.
We call it instant answersbecause you could, in one second
, get an answer from.
The other way in which we planto use AI is to really around
guidance and assistance, and so,you know, I think information
is one need, but very oftenpeople want help navigating.
(47:47):
You know, I think informationis one need, but very often
people want help navigating someaspect of ALS, and so we're
thinking of like how do we builda roadmap around making it even
easier?
You know, we think of like ROONshould be like your chief of
staff, right?
We're doing things for you thatmake your life easier outside
of just the information need,whether it's bookings, whether
it's like linking back toresources, whether it's helping
(48:08):
you buy something, and so that'svery aspirational, but we have
a whole roadmap around.
Can Rune be your best AIassistant, chief of staff for
navigating this and takes on theheavy lifting of planning
navigation that usually falls onfamilies.
(48:28):
And then the other big, justphilosophical AI question is you
know we don't want to replacedoctors and so, unlike chat, gpt
and perplexity, you know, weactually believe in a little bit
of a very old school, pre-ainotion of like there's nothing
that can be like thisinteraction.
Right, I'm looking at, we're ina room together and we're
(48:51):
having a conversation.
The essence of the app is anescaling doctor conversations or
doctor, um, medical expertknowledge, and so we never want
to subordinate or replace thejinxies or the Merritt's or the
James Berry's of the world.
It's actually inverse.
We were like how can AIhighlight their knowledge versus
(49:15):
replace or subordinate them,which is very different than
like Google ChatGPT.
They extract knowledge and theyjust give you the thing and a
doctor just becomes like asource.
You know.
Lorri Carey (49:29):
Right right right.
Vikram Bhaskaran (49:30):
Yeah, you know , we think one thing that will
be ai proof is a world expertwith empathy like human to human
, explaining something yeahnothing can actually replace
that, and there's a very humanneed for connection for someone
that legitimately cares, and sohow can we bottle that and make
(49:51):
sure that it enables that anddoesn't dilute the most
important thing, which is thethe doctor patient interaction,
you know?
Lorri Carey (49:58):
yeah, and you know, when you're talking right now,
I'm thinking Like how currentusing an app on your phone is,
and then how basic a one-on-oneconversation, trusting that
interaction, how like old schoolthat is, and so I think it's
(50:20):
really neat that you have an app, you have something state, stay
in the yard where you canaccess that warm, trusting
feeling of having someone thatknows what they're talking about
at a time that is so vulnerablein your life, you know yeah, I
(50:43):
think that's.
Vikram Bhaskaran (50:44):
That's the holy grail for us, which is
technology should be subservientto what humans do best, which
is like legitimately care andempathize and be compassionate,
and we almost give space andtime right to that.
Yeah, but that's a broader kindof philosophical question.
Lorri Carey (51:05):
Yeah, yeah, but that's a broader kind of
philosophical question.
Yeah, yeah, what's been themost rewarding feedback as a
result of putting this app outthere?
Vikram Bhaskaran (51:31):
I think what's been most rewarding is when I
hear two types online, um, thatthey are in facebook groups and
they're in reddit forums andthey are kind of just like
scouring the internet forknowledge, insights they're
trying to, and then they find usand then, like there's a like
drop the shoulders feeling ofokay, I finally found someplace
where I just have I don't haveto do the work and the work is
done for me, and the feedback weget a lot is like ROON feels
(51:54):
like a guide, you know, likepeople use the guide, like a
person, like a doctor friendthat has your back.
Someone once said that you havelike this, like doctor friend
that's not just a doctor butthat's guiding you, and like has
your back, and like that is theultimate um, you know, promise
of the service.
And when I hear that, I getreally happy because like the
(52:15):
persona of the brand and whatwe're trying to do is like a
doctor friend who has your back,you know yeah, and who gives
you space and time, and sothat's the feedback.
And then, on the other side, Ithink what is very heartwarming
is when doctors and ALS expertsexpress humility, when they say
(52:35):
like oh, I didn't even know.
Like this was what peoplenavigate, go through, and the
kinds of questions that your appanswers about the emotional,
the spiritual, spiritual, thepractical that, like, we would
never cover, you know, in aclinical setting.
Right, you're touching on allof that like, and like very
(52:55):
often neurologists would be.
Like I was humbled to learnthis, or I didn't even know
people asking this question, orI didn't know that, like, one of
the biggest concerns forsomeone when they leave my
clinic was, like, like you knowhow to navigate, genetic testing
is such a complex question, forinstance, and I didn't even
know that was the number onestress for someone that might
(53:17):
have left my clinic.
And so I think that is veryinteresting because, like, even
for clinicians, they suddenlyhave a window into, like, the
entire spectrum of experience ofals, way beyond the medical
side yeah and they're almostforced to up their game a little
bit because they know that,like wow, there's an amazing
(53:38):
communicator who's in anotherplace, who's able to talk about
end of life or mortality in thisexpansive, beautiful way.
And hey, I'm just like tellingthem about new dexa, you know
right, yeah, about a specifictreatment, and so I think many
of them have told us that runelike allows like ups their game
(53:59):
a little bit because theysuddenly see in one space like
all the best communicators,which I think is better for the
whole field because, you know,it makes the provider base
better as well and moreempathetic.
Lorri Carey (54:12):
Yeah, yeah, true, it's kind of like just having a
conversation over a cup ofcoffee with one of those experts
, right?
So you don't have like you'renot following your computer
screen and entering all the data.
You allow again, again, timeand space for new conversation
(54:37):
and new ideas and new thoughtsbetween the two of you.
Vikram Bhaskaran (54:44):
I have so much empathy for them.
Their lives are crazy.
Lorri Carey (54:48):
Yeah.
Vikram Bhaskaran (54:50):
One of the neurologists I won't name like
doesn't even have an admin at aleading academic center and so
scheduling their own ALSmeetings and and basically is
like completely under undersiege, understaffed, and so this
platform gives someone that'slike rushing between 12 minute
sessions, like the space toactually be themselves and to
(55:12):
pause and say why did I get it,why did I get into medicine?
What is my philosophy of care,you know?
And that spaciousness is reallyimportant.
Lorri Carey (55:20):
Yeah.
Vikram Bhaskaran (55:21):
The last thing I'll say sorry, this is no, no,
no, it's like.
The other thing I learned isthe importance of like not just
neurology but um pulmonology.
And the other very interestingpiece of the platform is like
the neurologist will learn aboutlike respiratory interventions
that actually end up extendinglife.
(55:43):
You know, way more thanactually any specific um
treatment or anything that canslow the progression of the
disease.
So it's actually been veryheartening to see different
disciplines kind of like learnfrom each other and people
outside of the academic medicalcenters who don't treat that
many ALS patients like, suddenlylook at the app and reference
(56:06):
and know what the true standardof care should be.
You know.
Lorri Carey (56:12):
Well, I love all that you and your team have done
.
I think this is an incredibleresource and you know, because
I've been around for a while, Iget a lot of calls.
I'll probably get a call a weekfrom someone that's just
diagnosed, because they hearthat I've had it for 21 years
(56:34):
and of course, they want to know, hey, what do you do, what do
you eat, what do you suggest?
Because I want to be a longtimer as well, and so this is
something you know, that I tellpeople about that they might not
have a question when I'm on thephone with them, and they're
going to have a different onewhen we hang up and along the
(56:55):
journey, and so this is a greatresource for everyone, no matter
what stage they're in.
And to my listeners, I will puta link in the show notes that
you can go directly to the app,and it's at roon.
com, r-o-o-n.
com.
Of course, I'll put a directlink in the show notes that you
(57:19):
can find on Facebook and thewebsite, both at I'm Dying to
Tell you Podcast.
Okay, I have one more question.
So, vikram, what are you dyingto tell us?
Vikram Bhaskaran (57:40):
I am dying to tell you that there is a space
called ROON that there is aspace called ROON, R-O-O-N.
com, and ALS is a very, veryhard journey.
It's hard, it's complex, it'sthe hardest thing that anyone
can ever go through for thefamilies, but there is a place
(58:01):
on the internet where peoplelike yourself can find comfort,
can feel less alone, and there'sa lot of hope in this community
, more in this community thanany other community that I've
been in.
A lot of hope, a lot ofstrength, a lot of compassion
(58:23):
and I've never seen a group ofpeople more motivated to kind of
change the world and shape thething that is affecting them.
And my inspiration comes fromyou, the listeners.
Lorri Carey (58:39):
Thank you so much.
I really appreciate you and itwas great meeting you.
Hopefully we'll get to hug inperson one day.
Vikram Bhaskaran (58:47):
No, thank you so much, laurie, and you
yourself are kind of an amazinghuman.
I I would love to just atanother time get to know you
better and yeah, yeah.
Thank you for doing what you'redoing and I think like, yeah,
you're super inspiring.
Lorri Carey (59:04):
Thank you, thank you, thank you again.
(01:01:06):
Again, Vikram, I reallyappreciate you and your entire
team for bringing out ROON toall of us in the ALS community.
Okay, to my listeners.
Thank you for being here and,like I said, I will put links in
the show notes on the websiteand Facebook page, both at I'm
(01:01:32):
Dying to Tell you podcast.
If you are just finding thispodcast, you know someone that
can benefit from ROON.
Please share this episode.
(01:01:56):
I mean, anytime there is anopportunity to lessen the burden
of ALS with a family, we simplycannot pass it up.
So I know this can help a lotof people and answer a lot of
questions Either they have nowor they're going to have in the
(01:02:20):
future.
So thank you for doing that.
Okay, thank you so much forbeing here.
Until next time, know you areloved and not alone.
Thanks for listening.
Thank you, boss.
(01:03:08):
Come on, boss, come on.
Is that right?
Okay, okay.
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