I'm Dying to Tell You
I'm Dying to Tell You
Questions About ALS? There's an App for That: Roon!
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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Hi, I'm Lorri, your host of I'm Dying to Tell you Thank you for being here. I am super happy that you are chiming in to this episode. It's going to be if you are in the ALS community or you know someone that is, or if you just want to hear an amazing story of someone who is honoring their father by building something incredible for a special community, than listening. So one of the things that I have learned over the past 21 years living with ALS is how incredible and how powerful it is to do a couple of things. Number one to gather with others who are living with ALS and to be able to share our experiences with each other is one. And the second one is the very unique opportunity when people are living with ALS, get to gather with an expert in the field, whether you're at a symposium, at a conference, at a gala and you're able to meet a scientist, a physician, a researcher, someone that is committed and really involved in the ALS world.
Lorri Carey:It's really a great opportunity and, like I said, a very unique opportunity to chat with them and hear what's going on, what they've learned, updates, and so one of the things that I absolutely love about my guest today is that he has created something that gives you an opportunity very similar to both of those, and I'm going to let Vikram tell most of his story. Going to let Vikram tell most of his story, but real quick. He was a caregiver for his dad who had ALS, and through Vikram's experience he found that finding a community and navigating medical, gaining medical information from where they were in India and everywhere, could be dramatically improved, and so Vikram and his team have created something very unique and accessible to the ALS community, and I am so excited to bring him on to talk about his inspiration for creating Roon , and I want him to walk step by step Roon Rune works. I know he's going to make it very easy for you to check out.
Lorri Carey:hey lori hi, how are you?
Vikram Bhaskaran:fine, we're able to catch up finally yeah, I know, thank you for having you know. I really appreciate what you do and uh, yeah, and remind me where are you based um.
Lorri Carey:I am in cincinnati ohio oh, amazing, amazing.
Vikram Bhaskaran:Okay, I hope I at some point we get to meet either in new york somewhere, yeah, yeah, that would be great.
Lorri Carey:That'd be great. I'd love that. All right, all right. Well, I'm so happy to finally catch up with you. You know I've been watching, uh, what you've been doing with the rune app and and I just think it's such a valuable resource even me, who has had als for 21 years, years like I love it, and you know I've learned through this podcast the power of hearing directly from like that is just worth so much.
Lorri Carey:So, right off the bat, thank you for putting this together and getting it out into our community. I really really appreciate it.
Vikram Bhaskaran:Thank you for saying that and I'm'm very excited to chat and appreciate you reaching out to highlight our work.
Lorri Carey:So I know that you developed this app because you had a special place in your heart from your own experience with ALS with your dad, so tell me a little bit about your dad.
Vikram Bhaskaran:Yeah, I'll, you know, I'll tell you about my dad, you know, before he had ALS so important sometimes to kind of remember people. You know the. So my dad was born in India, in Bangalore, actually. He was born in a town called Madurai, which is in a state called Tamil Nadu. Uh, but we are from Bangalore, which is in South India, and my dad was an entrepreneur. He was a tennis player. Uh, he was an incredible storyteller, um, very big personality, uh, gregarious, and loved sort of really everything about life. Yeah, he was the person you would kind of gravitate towards in a party or in any sort of social setting.
Lorri Carey:Oh, I love that.
Vikram Bhaskaran:Yeah, and he was, you know, he was an engineer and a very brilliant engineer and entrepreneur and a very brilliant engineer and entrepreneur. I was diagnosed with ALS in kind of 2012 and really spent about six to seven years, you know, fighting ALS and it wasn't sort of a fast journey but it was slowish. But you know it kind of in my mind it happened very fast, yeah. And in the journey of navigating ALS, you know it kind of in my mind it happened very fast, you know. And in the journey of navigating ALS, you know a few things. One is because he was in India.
Vikram Bhaskaran:We just it took us a while to get diagnosed. It took us about 18 months to understand what this was. India has a massive neurology shortage. There's about 5,000 neurologists in India, which is the same number of neurologists in Massachusetts, and so understanding something like this is very hard and you know, for most of the world we don't have access to sort of the great academic medical hospitals we have here in the US and the specialty care, and so it took him a while to get diagnosed. 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:We struggled with sort of access to information and access to expertise and and yeah, so the journey was very, very it was I was a very dark place for all of us as a family, but it inspired Rune and it inspired me to create this company to ALS and quickly become frustrated and feeling helpless that they're not getting the information that they need or at the speed that they want, and so but you had a skill set that you were able to actually take action, you know, and build something with that. So tell me a little bit about, like how you were able to hearing this idea through and actually make it reality.
Vikram Bhaskaran:Yeah, so the you know I was. You know I was in Silicon Valley at a company called Pinterest. You know was I helped sort of build that platform and it was an amazing, amazing endeavor. But when my dad had ALS, I had this sort of like head scratching moment where I felt so many of the brightest minds of my generation were building these beautiful apps like Pinterest, airbnb, slack, uber. You know all of the amazing companies Netflix, spotify, healthy, happy people. Have you know all of the amazing companies Netflix, spotify, healthy, happy people have you know, instantly on their phone. And so many of these companies were built. So many of these companies had amazing user experiences and really took time to understand their consumer.
Vikram Bhaskaran:But when it comes to health, it felt like we were in the dark ages. You know, I was day job interest, surrounded by the brightest minds in engineering and design, and I'd go home every night and I'd be in this like dystopian world of Facebook groups, misinformation on TikTok. You know the doctor Google problem, where you have go down these rabbit holes of misinformation. The first thing you'll read when you go to Google is that, like, als is a terminal condition and you will die in three to five years. And so all of it felt either it was like the information was too superficial or it felt the experiences were like nobody really cared about the actual journey of someone that was navigating at these apps. These services felt they were really built in like the late 90s, early aughts.
Vikram Bhaskaran:And the other thing I just noticed was the access to experts. I felt that so much of the internet is about making people and information available, but when it comes to healthcare there's only a finite number of experts. It takes a hard time to schedule an appointment with an expert. When you're meeting with a neurologist, you know, let's say, for ALS, you have 20 minutes to get all your questions answered. You know my dad flew from Bangalore to UCSF to meet with someone for 18 minutes and like it was just crazy to me that you know a three-day trip for someone with a terminal condition. You finally get to meet this person and you're rushed in and out of the experience and we have so many questions that were unanswered.
Vikram Bhaskaran:So I took all of this together. My basic question was can we take all of the things we've learned from consumer internet companies good design, good UI, thoughtful, empathetic storytelling, products that actually think and look around the corner and like, think about the journeys, of what people are navigating and can we apply it to this space that feels raw and where people just have so little access? You know, and the big kind of human insight I had is like what if we took the best neurologist in the world and the feeling of being able to sit in front of them and get your questions answered, put that on an app and make it available universally? You know, there's this one neurologist that specifically sparked the inspiration for the company. Her name is Dr Jinzi Andrews and she's at Columbia and she's an incredible communicator.
Vikram Bhaskaran:And when I met her, I was was like imagine if the world could have Jinzy in their pocket wherever they needed, wherever they wanted. You know, yeah, empathy, compact and and advice. And so that was the quest, and so I quit my job at Pinterest and I knew that to do this well, I needed to get a team of doctors and academic medical experts, as well as the tech and 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 all part of this movement to build the best place online for health access and health information. So we can all really say like, no more Dr Google and there's a safe space to get access to experts that we can trust and also in a form factor that we can consume. No one wants to read white papers and watch law. We just want answers to questions and get back to life. Right?
Lorri Carey:You're right, you're right, you're right. Yeah, great point.
Vikram Bhaskaran: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 Rune A-R-U-N and Roon is I wanted to be short, easy to remember. Yeah, a nod to the person that inspired the company Rune. Backwards is Nur, which is light in the time of darkness in Arabic, and so the brand is very much like a sanctuary, a place of of light and hope and yeah. So that that's just a little bit about how I got started and and and what we built yeah, I love that.
Lorri Carey:And you know you were mentioning about having the top neurologists or the top experts as a part of this app. You know, I was talking about just the community and the one-on-one Like. I know you know what I'm going through as far as other patients talking to other patients, other caregivers talking to caregivers. But that's a great point, because even if you happen to have one of those top als experts in your area and you go to them, maybe they are an expert in research, but maybe not so much over here, you know, maybe not so much respiratory or um or trials, or you know, I feel like over 21 years physicians and I have met they all have their little niche. Yeah, I mean not that they can't do everything, but when I think of dr Bedlack, I think about man.
Lorri Carey:That guy has got the best hopeful, inspiring attitude and you know, in my mind, without being his patient, that's what I associate him with. And then you know, maybe someone else he's the research guy. He can tell you exactly what is going 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:Yeah, and you know, to build on that, als is so multidisciplinary, right. I remember my dad having to figure out how to kind of cobble together OT and PT and speech pathology and people that can think about like home renovation. There's such a big cast of people that you need to actually tap into that. The average person probably has to have many, many appointments. You know, like at Mass General, you show up and it has this.
Vikram Bhaskaran:All the whole cast shows up, right, but most of the world we don't have access to an entire multidisciplinary team and so part of the app is actually how do I kind of create the feeling of the best from the Duke clinic, the best from the Harvard MGH clinic? You know the caregiver that knows how to think about travel and mobility and have all of this in one place so that you, as the patient or you person living with ALS, you don't have to think about travel and mobility and have all of this in one place so that you, as the patient or you person living with ALS, you don't have to think about going to all of these different sources. Yeah, because not only is ALS a hard, like the double tax of having the condition and then having to navigate. All of the expertise is is is great Right so.
Lorri Carey:Yeah, it's like a double whammy. I it's like, man, am I not suffering enough? Am I not handed this huge burden? And that isn't enough. And I have to go sorting through and I have to figure out, and I have to figure out what's right, what's wrong, you know, and all that, yeah, unnecessary on that point I've often felt when you are navigating something hard that's health related.
Vikram Bhaskaran:There's kind of three sources of knowledge. There's like the medical right and you want someone with an MD or a PhD next to their name teaching you stuff that's medical. There's the practical right how should I set up my home? What wheelchair should I get? What is the best in my dad's case, like the Hoyer lift, like actually the best lift, and how do we design that in our home in India? There are all these very, very practical concerns.
Vikram Bhaskaran:And then there's the emotional, which is like how do I think about mortality? How should I communicate to my kids, in my dad's case, like should we go on a big trip? And like what does it mean to you know, if you have limited time on the planet? And like how do you make your days meaningful? And there's so much of emotional stuff and most people navigate all three.
Vikram Bhaskaran:Right, you want you want the medical, the emotional and the practical, and it's very hard today to find all of those three things in the same space. You know you tend to your community for the emotional you might tend to. You might look at Reddit and find like practical advice and then you might go back to your neurologist for the medical. And so a big part of my vision is it can ruin be like one place for all types of information needs, because a health journey has all of those things and in fact, sadly, the practical and the emotional tends to weigh on you more than just the medical, because medicine only can do so much.
Vikram Bhaskaran:At least with ALS, there's only so much you can do medically. And so how do you live with? This becomes kind of the most important question you know.
Lorri Carey:Yeah, yeah, very true. So I want to talk about the app, because I was in a symposium at the beginning of this week and I was featuring the podcast and you know it's so really surprising how many people are like what's a podcast? How do I? How do I get to a podcast? Oh no, I don't want to watch that. I'm like, well, you listen, um. So can we just start from the beginning for a listener who doesn't have any apps?
Lorri Carey:that they interact with on their phone or on their desktop. Can we just say from beginning this is how you start.
Vikram Bhaskaran:Yeah, I love that. You know, I think it's such an important. It's so easy to just assume people 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 a very easy like desktop. You're on a computer, you have access to a laptop. ROON COM website. It's easily accessible, it's easy to go find and you don't need to download anything, right? So that's like the first thing I'll say. And when you go ROON , you can.
Vikram Bhaskaran:The reason we ask you to sign up, the reason it's a sign-up experience, is we want to tailor the experience based on who you are. Are you someone living with it? Are you a caregiver? Are you a friend? Are you a healthcare professional that just wants to learn? And so it's a free sign-up. It takes like less than three minutes. We ask you some basic information and we're not using the information in any like to target you with anything. It's just basically so we can better serve you. It takes three minutes to get through.
Vikram Bhaskaran:You can sign up with your email, with your phone number or through like Facebook login and Gmail login as well. Once you're in the app. There are kind of like four spaces. There is, if you have a question you're like I have a burning question we have a feature called Ask Rune, kind of like ChatGPT or Google. You can just go there and write your question and the question may be like what are the most common symptoms of ALS? Or it could be again, going back to the practical, emotional and the medical. It could be something very emotional, like I'm feeling scared or I feel anxiety, and then all the answers that we give you are pulled from the experts on our platform and we have hundreds of experts across all the leading academic medical hospitals, across people with different specialties, so from neurology to speech, language pathology, to even mental health and therapists who have specialized in ALS. And so these answers are not like the internet at large. They're all vetted, they're all highly trusted and they're from world experts or people with lived experiences.
Vikram Bhaskaran:But let's say you don't have a question.
Vikram Bhaskaran:You're like I don't have a question, I just want to learn and I don't know what I don't know. You know, in my case I had so many questions about genetics but I didn't know what the right questions were. So we you can go to something called kind of explore on the app and the explore button has all of the topics, and these topics range from breathing to nutrition, to advocacy, to mental health, to treatments, caregiver support, and we've tried to build a little bit of a map of all of the most common topics that you should learn about and you can explore and then browse content. And then the last thing I'll say is there's a place on the app for experts. Very often, as you said earlier, people have bed lack for a certain reason, so we have a place on the app for experts. Very often, as you said earlier, like people have bedlock for a certain reason, so we have bedlock on the platform and so you can go and browse any expert and you can see their answers to questions, like on their profile.
Vikram Bhaskaran:Yeah, right we have folks like Dr Merritt, who's the world leader at Harvard, james Berry, ginzi, christina Fournier, timothy Miller, who invented one of the most important ALS interventions, to nonprofit leaders, to folks like and I'm just looking at the list here Lowman at UCSF. So it's a full cast of characters, from caregivers to pulmonologists, genetic counselors, pt, ot, mental health, nursing, you know, and including the science and research as well. And then yeah, and then that's it right? It's super simple. You can ask questions, you can browse, you can look at profiles, and the whole app is centered on short form video Q&A.
Lorri Carey:Yeah, and if I can jump in, that's the key right there is that this is video Very short, concise video clips that you can watch. That's what people are used to right now we're very mindful of your time.
Vikram Bhaskaran:We're respectful that you shouldn't be watching a webinar, so all the answers are short, they're meant to give you something quick and digestible, and there's also read mode where on every answer, we have a little read button where you can hit read and read an answer. Now, if you have an Apple phone and you are on the go and you prefer, like a mobile device, search for Rune in your app store and Rune will be one of the top hits and you can download the app.
Lorri Carey:Right and there's no cost to use it. There's no cost to download it as well.
Vikram Bhaskaran:Yeah, and you know, every time you have itched to go to Google or chat GPD, I would say don't do that, but go to Roon, because we have expert led, expert content and so everything is empathetic, easy digest, easily digestible and easy to use.
Lorri Carey:Yeah, I love that. And so, just like you were describing getting to a specific physician or researcher that is well known in our community and you're in your 20s and you want to connect with someone like Brooke Evie, then you can type in her name and then you can see all of the questions that she has answered and you might already think, ok, this is someone that I can really relate to, because I don't have children and I'm, you know, not worrying about that right now. I'm young. I'm worried about, you know, do I have to live with my parents forever and all that kind of stuff. And then so you get connected and I know that you can follow that particular person if they are someone that you, you know, are in line with yeah, I think that's a really important.
Vikram Bhaskaran:I think so much, so much of this whole experience is like connecting with a person. That's relatable to your own specific way of receiving information. You know, in my case, like I don't like doctors who are very blunt and short. I want that a slight like the nuance and the emotional way of communicating with good bedside manner. But some people are like, give me the facts right. And so we have all types of communication styles on the platform, almost by design, and we also have community members who have lived through ALS and basically are bringing it forward and giving their insights and suggestions and wisdom, and lots of caregivers as well.
Vikram Bhaskaran:Yeah, yeah A lot of caregiver insights, that are partners of people with ALS, and they also have contributed tremendous amount of knowledge and insights and yeah, so it's all in this one place.
Lorri Carey:How do you even like with research updates? How do you ensure that the information that you have in your app is the most up to date?
Vikram Bhaskaran:It's a really hard. It's a good question. It's a hard question as well. One of the things we do is one is we're continuously scouring the internet for anything new. Right, we have alerts set up. We have if there's new ALS science, research, anything, a new type of standard of care, we get alerts and then we are notified as a company. And then we write questions and we go back to our experts and we say you know, hey, this new thing happened. We need to either update or replace this content. So that's very top down and a very but an important kind of active living breathing value.
Vikram Bhaskaran:We have that said because we have so many experts. Very often they themselves, they all have profiles. They want to keep their profiles updated, and so our medical team will email us and say this study has changed or this is a new protocol and I want to update my profile. And because it's so easy to create content, you just shoot an answer on the go. And because it's so easy to create content, you just shoot an answer on the goal. We take that updated content and then sometimes people in the community and this is why I love the ALS community will challenge us and say like hey, we recently got an email about like something on a veteran's page that was outdated and you know we immediately said apologize for this, let's keep it updated, and then we go find the answer. So it's a little bit of community-driven, doctor-reinforced and then us also continuously making sure the information is up to date.
Lorri Carey:Yeah, it's a team effort. Yeah, so, as far as where you are right now with the app, are you happy with where you are? Do you have goals or something that you wish that you were able, you know, to do as a part of this endeavor?
Vikram Bhaskaran:yeah, you know I'm always dissatisfied with the state of the. That's a. Uh, you know, I always look at it. I'm like, ah, we can do so much better, which is, I think, a good, good thing.
Vikram Bhaskaran:And I think the, the places where we're making big investments, um, you know, one is just making it even more accessible. I think accessibility I just remember my dad, for instance, at some point he couldn't actually move his arms, and so it's so important to make it. I think we're just we're kind of I'd give ourselves like four on ten, right. So, um, so, this quest to make it more accessible, easier to read, even things like the colors it's a dark app, like how do we make it like extremely easy to read? So we're on a continuous journey of making it more accessible, readable, digestible. Um, we want more experts as well.
Vikram Bhaskaran:You know, I think think we have a lot of we skew very medical. You know we have like all the best neurologists and I think. But so many people have told us they'd like to hear from the community and they want to have community members contribute content in a more seamless way, and so we're making big investments in like, can anyone just answer a question and can you. You learn from another member of the community, so eventually we'll be making investments in the community as well. Communicators, teaching in a digestible format and giving people instant answers and a guide 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 all personal to us and where we feel there's a big gap in access to care or access to information, and so over the next few years we'll be, you know, really spanning more health areas, even beyond ALS. My roots are in ALS because that's where we started the company.
Vikram Bhaskaran:So my goal is to always make sure that the ALS app is the best experience for people navigating ROON, and I want the ALS app to be kind of the beacon for anything else we build.
Lorri Carey: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 submit that question?
Vikram Bhaskaran:Really good question. And so today, if there's no answers and that happens, right, sometimes people ask a question yeah, there's a flow to ask a ask, ruin the question and then. But the way you do it is you almost 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 you almost give the answer a thumbs down and then you can ask the question, and then that question goes into our database, which we then go back to our experts to ask. So every day the app gets better because we find new things that we couldn't predict that someone asked. And you know the whole system is like this, living breathing. You know, unlike like a non-profit, where once a quarter they update things, or unlike like webmd or google that might look at something. We're continuously updating the content.
Lorri Carey:So like I went on there yesterday and I asked a couple of questions and I couldn't find anything on oh, okay, shame on us, and then I'll make sure we yeah, yeah, yeah, no, let me just ask you and see if, um, I'm missing something.
Lorri Carey:So one question I asked was about someone that had had ALS for a long time, like is there anyone that's had als for 20 years? You know, like me, because, again, you know, I would want to connect with them on certain things and like. Another question is survivor's guilt, and that comes up a lot in my podcast. When I'm interviewing someone that's had ALS for even six years, seven years, 10 years, they always bring it up Do you ever have survivor's guilt Because all of the people that you met on day one at support group are now gone? You know that kind of thing. So, anyway, those are a couple of that.
Vikram Bhaskaran:Yeah, I think, firstly, those are two really great areas and I'm happy to like personally take them and get some, get some content on on those two topics, you know, yeah, yeah, that'd be great.
Lorri Carey:When you think where the app is right now and you think of your dad, what do you think he would say to you now, having created this app?
Vikram Bhaskaran:yeah, oh wow, that's a big, big question well done yeah, you know, I think he was an entrepreneur and he was a builder and he was an engineer, and you know yeah. I think I feel my dad would be proud that I didn't just experience this as a caregiver and kind of move on with my life um and I think he would be proud that this thing kind of like really stopped me in my tracks and I decided, decided to do something about.
Vikram Bhaskaran:you know, he was like that. Weirdly, I think I got that from him. You know, my dad was not a passive person. If something wasn't working, he would. He has a high agency, he would, even during with ALS, he built, he was an engineer, so he built like ramps and he built his own wheelchair accessible car and he built a machine that would pick him up and take him to the bathroom, and so he was a high agency person where, um, and so I think like he would be happy that I, I did something with this.
Vikram Bhaskaran:uh, you know yeah and so I think, I think, yeah, I think he would be proud, I hope he would be proud oh, yeah, for sure, yeah, yeah and I think, I think also.
Vikram Bhaskaran:I think also the thing that he would probably be especially happy about is we grew up in India, and I think it's a completely different experience when you're outside of the United States, in parts of the world without access and so I think the idea that we're bringing some of the world without access and so I think the idea that we're bringing some of the best American doctors and experts who study ALS to any part of the world would be, I think, something you would be happy about. I think, if I judge this as a rich person, western concierge like you have to pay to get access to get something, and like it's not available in india or other parts of the world, it would have missed the buck. So that's always a not star for me yeah, yeah.
Lorri Carey:How do you fund the app? How do you keep on going?
Vikram Bhaskaran:I want to make the app free and as accessible as possible and and so to do that. The kind of business model that supports that is, sponsorships, where the app is sponsored and then the content is free. There are other things we could do where we partner with hospital systems, we partner with ALS clinics, we partner with insurance companies, so we're exploring all of those in parallel clinics. We partner with insurance companies, so we're exploring all of those in parallel. But the goal is to make it as free as available to people navigating ALS and, you know, make it part of a benefits plan or make it part of a you know offering from a hospital? Yeah, it's, but healthcare is very hard and, like there's so many different, you know ways to get something to work, and so we're in sort of active discussions to do that.
Lorri Carey:Mm-hmm. Okay, as far as AI technology, how do you see that playing a role in what you're doing right now?
Vikram Bhaskaran:So when you ask a question on ROON, what we are doing is our AI is kind of taking all of the content and giving you like an instant, multi-perspective answer summary, and so we're already using AI in that way and it's kind of magical, right.
Vikram Bhaskaran:Like any of our doctors are like, oh wow, you've stitched together like Bedlack and Ginzi and married Catherine Lohman into a single answer, like for a pre-AI, you would have to have each and you'd have to go to each person and get the answer and have someone write up an answer and editorialize it and summarize it and fact check it Like in one instant. We have AI doing that for you. So the answer AI product is like instant. We call it instant answers because you could, in one second, get an answer from. The other way in which we plan to use AI is to really around guidance and assistance, and so, you know, I think information is one need, but very often people want help navigating. You know, I think information is one need, but very often people want help navigating some aspect of ALS, and so we're thinking of like how do we build a roadmap around making it even easier? You know, we think of like ROON should be like your chief of staff, right? We're doing things for you that make your life easier outside of just the information need, whether it's bookings, whether it's like linking back to resources, whether it's helping you buy something, and so that's very aspirational, but we have a whole roadmap around. Can Rune be your best AI assistant, chief of staff for navigating this and takes on the heavy lifting of planning navigation that usually falls on families.
Vikram Bhaskaran:And then the other big, just philosophical AI question is you know we don't want to replace doctors and so, unlike chat, gpt and perplexity, you know, we actually believe in a little bit of a very old school, pre-ai notion of like there's nothing that can be like this interaction. Right, I'm looking at, we're in a room together and we're having a conversation. The essence of the app is an escaling doctor conversations or doctor, um, medical expert knowledge, and so we never want to subordinate or replace the jinxies or the Merritt's or the James Berry's of the world. It's actually inverse. We were like how can AI highlight their knowledge versus replace or subordinate them, which is very different than like Google ChatGPT. They extract knowledge and they just give you the thing and a doctor just becomes like a source. You know.
Lorri Carey:Right right right.
Vikram Bhaskaran:Yeah, you know, we think one thing that will be ai proof is a world expert with empathy like human to human, explaining something yeah nothing can actually replace that, and there's a very human need for connection for someone that legitimately cares, and so how can we bottle that and make sure that it enables that and doesn't dilute the most important thing, which is the the doctor patient interaction, you know?
Lorri Carey:yeah, and you know, when you're talking right now, I'm thinking Like how current using an app on your phone is, and then how basic a one-on-one conversation, trusting that interaction, how like old school that is, and so I think it's really neat that you have an app, you have something state, stay in the yard where you can access that warm, trusting feeling of having someone that knows what they're talking about at a time that is so vulnerable in your life, you know yeah, I think that's.
Vikram Bhaskaran:That's the holy grail for us, which is technology should be subservient to what humans do best, which is like legitimately care and empathize and be compassionate, and we almost give space and time right to that. Yeah, but that's a broader kind of philosophical question.
Lorri Carey:Yeah, yeah, but that's a broader kind of philosophical question. Yeah, yeah, what's been the most rewarding feedback as a result of putting this app out there?
Vikram Bhaskaran:I think what's been most rewarding is when I hear two types online, um, that they are in facebook groups and they're in reddit forums and they are kind of just like scouring the internet for knowledge, insights they're trying to, and then they find us and then, like there's a like drop the shoulders feeling of okay, I finally found someplace where I just have I don't have to do the work and the work is done for me, and the feedback we get a lot is like ROON feels like a guide, you know, like people use the guide, like a person, like a doctor friend that has your back.
Vikram Bhaskaran:Someone once said that you have like this, like doctor friend that's not just a doctor but that's guiding you, and like has your back, and like that is the ultimate um, you know, promise of the service. And when I hear that, I get really happy because like the persona of the brand and what we're trying to do is like a doctor friend who has your back, you know yeah, and who gives you space and time, and so that's the feedback. And then, on the other side, I think what is very heartwarming is when doctors and ALS experts express humility, when they say like oh, I didn't even know.
Vikram Bhaskaran:Like this was what people navigate, go through, and the kinds of questions that your app answers about the emotional, the spiritual, spiritual, the practical that, like, we would never cover, you know, in a clinical setting. Right, you're touching on all of that like, and like very often neurologists would be. Like I was humbled to learn this, or I didn't even know people asking this question, or I didn't know that, like, one of the biggest concerns for someone when they leave my clinic was, like, like you know how to navigate, genetic testing is such a complex question, for instance, and I didn't even know that was the number one stress for someone that might have left my clinic.
Vikram Bhaskaran:And so I think that is very interesting because, like, even for clinicians, they suddenly have a window into, like, the entire spectrum of experience of als, way beyond the medical side yeah and they're almost forced to up their game a little bit because they know that, like wow, there's an amazing communicator who's in another place, who's able to talk about end of life or mortality in this expansive, beautiful way.
Vikram Bhaskaran:And hey, I'm just like telling them about new dexa, you know right, yeah, about a specific treatment, and so I think many of them have told us that rune like allows like ups their game a little bit because they suddenly 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 more empathetic.
Lorri Carey:Yeah, yeah, true, it's kind of like just having a conversation over a cup of coffee with one of those experts, right? So you don't have like you're not following your computer screen and entering all the data. You allow again, again, time and space for new conversation and new ideas and new thoughts between the two of you.
Vikram Bhaskaran:I have so much empathy for them. Their lives are crazy.
Lorri Carey:Yeah.
Vikram Bhaskaran:One of the neurologists I won't name like doesn't even have an admin at a leading academic center and so scheduling their own ALS meetings and and basically is like completely under under siege, understaffed, and so this platform gives someone that's like rushing between 12 minute sessions, like the space to actually be themselves and to 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 really important.
Lorri Carey:Yeah.
Vikram Bhaskaran:The last thing I'll say sorry, this is no, no, no, it's like. The other thing I learned is the importance of like not just neurology but um pulmonology. And the other very interesting piece of the platform is like the neurologist will learn about like respiratory interventions that actually end up extending life. You know, way more than actually any specific um treatment or anything that can slow the progression of the disease. So it's actually been very heartening to see different disciplines kind of like learn from each other and people outside of the academic medical centers who don't treat that many ALS patients like, suddenly look at the app and reference and know what the true standard of care should be. You know.
Lorri Carey:Well, I love all that you and your team have done. I think this is an incredible resource and you know, because I've been around for a while, I get a lot of calls. I'll probably get a call a week from someone that's just diagnosed, because they hear that I've had it for 21 years 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 long timer as well, and so this is something you know, that I tell people about that they might not have a question when I'm on the phone with them, and they're going to have a different one when we hang up and along the journey, and so this is a great resource for everyone, no matter what stage they're in.
Lorri Carey:And to my listeners, I will put a 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 direct link in the show notes that you can find on Facebook and the website, both at I'm Dying to Tell you Podcast. Okay, I have one more question. So, vikram, what are you dying to tell us?
Vikram Bhaskaran:I am dying to tell you that there is a space called ROON that there is a space called ROON, R-O-O-N. com, and ALS is a very, very hard journey. It's hard, it's complex, it's the hardest thing that anyone can ever go through for the families, but there is a place on the internet where people like yourself can find comfort, can feel less alone, and there's a lot of hope in this community, more in this community than any other community that I've been in. A lot of hope, a lot of strength, a lot of compassion and I've never seen a group of people more motivated to kind of change the world and shape the thing that is affecting them. And my inspiration comes from you, the listeners.
Lorri Carey:Thank you so much. I really appreciate you and it was great meeting you. Hopefully we'll get to hug in person one day.
Vikram Bhaskaran:No, thank you so much, laurie, and you yourself are kind of an amazing human. I I would love to just at another time get to know you better and yeah, yeah. Thank you for doing what you're doing and I think like, yeah, you're super inspiring.
Lorri Carey:Thank you, thank you, thank you again. Again, Vikram, I really appreciate you and your entire team for bringing out ROON to all 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 website and Facebook page, both at I'm Dying to Tell you podcast. If you are just finding this podcast, you know someone that can benefit from ROON. Please share this episode. I mean, anytime there is an opportunity to lessen the burden of ALS with a family, we simply cannot pass it up. So I know this can help a lot of people and answer a lot of questions Either they have now or they're going to have in the future. So thank you for doing that. Okay, thank you so much for being here. Until next time, know you are loved and not alone. Thanks for listening. Thank you, boss. Come on, boss, come on. Is that right? Okay, okay.