Zoe Lalji | ALS Heroes | Virtual Reality, ALS Advocacy, & Self-Awareness

Zoe Lalji is a junior at UT Austin studying neuroscience with a minor in entrepreneurship on a pre-med track, and she is working to make virtual reality accessible to ALS patients. In this episode, she discusses what it was like when her dad was diagnosed with ALS and how that changed the trajectory of her career, her work with advancing virtual reality technology to better support patients' lives, and how hardship has developed an essential self-awareness.  

Guest links: https://www.linkedin.com/in/zoe-lalji/

Charity supported: ALS Heroes

Interested in being a guest on the show or have feedback to share? Email us at podcast@velentium.com. 

PRODUCTION CREDITS
Host: Lindsey Dinneen
Editor: Tim Oliphant
Producer: Velentium

 

SHOW TRANSCRIPT

Episode 010 - Zoe Lalji

Lindsey Dinneen: Hi, I'm Lindsey with Velentium and I'm talking with MedTech industry leaders on how they change lives for a better world.

Diane Bouis: The inventions and technologies are fascinating and so are the people who work with them.

Frank Jaskulke: There was a period of time where I realized, fundamentally, my job was to go hang out with really smart people that are saving lives and then do work that would help them save more lives.

Diane Bouis: I got into the business to save lives and it is incredibly motivating to work with people who are in that same business, saving or improving lives.

Duane Mancini: What better industry than where I get to wake up every day and just save people's lives.

Lindsey Dinneen: These are extraordinary people doing extraordinary work, and this is The Leading Difference.

Hello and welcome to The Leading Difference. I'm your host Lindsey, and I am so excited to introduce you to my guest today, Zoe Lalji. Zoe is a junior at UT Austin studying neuroscience with a minor in entrepreneurship on a pre-med track. Her passion for neuroscience began when her father was diagnosed with a Amyotrophic Lateral Sclerosis (ALS) in 2017. And since then, she has been constantly searching for ways to improve his quality of life and expand his avenues of connection with the world around him. As part of this work, she is working to make virtual reality accessible to ALS patients and other highly disabled populations as a way to provide them with autonomy in the form of novel experiences and immersive activities that they're unable to engage in physically.

Zoe, oh my gosh, thank you so very much for joining us. I am just so very delighted that you're here and I just can't wait to hear more about your story and your background. But first, thank you just so much for being here.

Zoe Lalji: Aw. Thank you, Lindsey. Thank you so much for inviting me. It's awesome to be a part of this great podcast you have.

Lindsey Dinneen: Awesome. Well, I was just wondering if you wouldn't mind starting by just telling us a little bit about yourself and your background and what led you to what you're doing now.

Zoe Lalji: Sure. So, right now I'm a junior at UT Austin and I'm studying neuroscience on a pre-med track and minoring in entrepreneurship. And as far as what kind of got me to where I'm at and-- I've been passionate about medicine for as long as I can remember. Both of my parents are in medicine. My dad was a dentist and my mom studied as a gynecologist and transferred into functional medicine. And they both had their own practices, so I've had that business background as well.

But that all shifted, I would say, when my dad was diagnosed with ALS in 2017. And from there it was a pause button if you could say on on my entire scheme of my life, my plans. You know, I think with pre-meds there's a track that is a starting point and you have a series of events that are lined out for you until you reach medical school and get that MD. And that kind of stopped me in my tracks and made me reassess what was truly important because I had to spend a lot of time caring for my dad, caring for my family, and it definitely shifts your priorities and makes you reassess your life.

And although, everything was still of in line with my values growing up, which was, I've always wanted to help people and that's what drew me to medicine. That's what I had really admired about my parents is the impact they had made on others' lives that were struggling, that had health conditions and needed guidance in that area of their lives. And I think watching my dad undergo one of those health conditions and just doing everything in my power to make it better for him in any way that I can. It just truly strengthened that core value for me.

And I think when you're in pre-med, there's kind of a tendency to get tunnel vision. And, kind of that check mark mentality where you go, "Do I have the grades? Do I have the volunteer hours, the extracurriculars," all that stuff. And I think, you lose sight of the why of medicine, until even after residency when you're actually in the field where you actually meet the patients and you actually you know, talk to the people that are struggling and realize how important it is. And until then, it's more about, memorizing facts and figuring out how the body works without really putting it into the context of the bigger picture.

So I think studying medicine alongside actually understanding what it's like to be on the other side, on the patient perspective, was a real driver for me. I guess the turning point for me for where I really realized that making an impact for medical problems is where my heart really lies.

Lindsey Dinneen: Yeah, that is such a powerful story, so thank you for sharing that. I was wondering if you would be willing to share a little bit more about ALS and how that affects people's lives. I know it's a very difficult disease, but just from your perspective, especially having experienced it and trying to help someone who is dealing with it-- I would just love to hear a little bit more about it.

Zoe Lalji: Yeah, absolutely. So ALS is a neurodegenerative disease. It impacts the motor neurons in the body, which effectively causes people to lose their ability to walk, talk, move any part of their body and eventually breathe on their own. And it's a interesting disease in that there's not much known about the pathophysiology of it, in that like they don't know what causes it. They don't know how to even approach treatment. Only 10% of ALS cases have been found to be connected to a gene. And even then they haven't really found a way to reverse any of that.

So it's a completely uncured disease, the treatment is very limited, in that there's maybe a few months of life expectancy increased by the treatment, but in contrast you get a lot of side effects from it, which effectively makes you pretty much zombified. You know, it's a lot of fatigue, a lot of nausea, and a lot of patients just opt not to do it because the quality of life is really reduced from just being on those treatments.

And so it's just a hopeless disease. And when you're given that diagnosis and told that it's always fatal and there's nothing that really you can do, you just feel completely helpless. And then as you lose your agency over your body, your ability to do things on your own, that helplessness sort of grows and consumes you. It's a very difficult disease to be diagnosed with on the patient and the family.

Lindsey Dinneen: Of course. Yeah. Well, and I know part of your work, something that you are doing right now is working to make virtual reality accessible to ALS patients. And I love this idea, and I would love if you would be willing to share more about this and what brought that idea about and where is it taking you.

Zoe Lalji: Yeah, of course. I love talking about it. This idea came from just my desire and my constant searching for things to do with my dad or things to bring him happiness in his life, or greater quality of life. And it came about from actually an internship I had during my gap year, which I took before college. And I was at a startup accelerator and there was a XR lab in the accelerator where they had virtual reality headsets, and I had talked to the head of the lab and he let me use one of his headsets and I ended up using Google Earth on the headsets. And I don't know if you've ever used virtual reality, but for whoever has used it, it's very life like, like you actually feel like you're there. You feel like you're walking the streets of Rome or you're in, you're in Paris, or so many different places that you can just click a button and just be fully immersed there. And that's just Google Earth.

There's so many other immersive scenarios that you can dive into in virtual reality. And with the immersion of the Metaverse and so many different concepts of the growing interest in virtual reality as a way to have a life outside of the physical life. And just from seeing that Google Earth scenario, immediately I thought, "Wow, this would be incredible for my dad."

Because for patients that have all of these life support machines, when they lose their breathing, you have to get a surgery and you have to be basically connected to a machine that controls your breathing. And obviously with that, you can't travel, you can't get on a plane. And for many of these patients, like my dad, you have all these hopes of where you would like to travel one day, things you would like to do one day, and life just happens and you don't end up doing it. But you always think there's time. You always think, " Maybe when I retire, I'll go and travel the world." The common notion that people say.

When something like this happens and puts your life in pause where you realize you're never gonna be able to travel again, or you're never gonna be able to skydive or bungee jump or do those bucket list things that you said that you would one day do. And like, even further than that, it's more the things that you used to do every day that sort of defined you, that sort of made you feel like-- for example, my dad would, for as long as I can remember, probably my earliest memory of him is him waking up every morning and going for a run. And he never missed a day. And it was so important to him, like being who he is and his day working out the way he wanted it to, that he had that run, he had to start his day off feeling like himself.

And I feel like we all have those hobbies and habits that really all together define who we are. And when you get a disease, not only is it like you're losing all of those things all at once, you start to define yourself as your disease then, because there's nothing else really left. I think for me, virtual reality meant giving those back this semblance of who they once were that they've lost. I think we're all the sum of what we do every day and our dreams and hopes for the future. And when those are taken away, it's who are we really? And that's not even considering the communication that patients lose. So you can't even really express yourself either.

So with that, it's like there's this huge disconnect with their identity and I, I just see VR as a way for these patients to enter the world where they don't have to be defined as their disability, where they can do everything that anyone else can in virtual reality. And the problem lies with the modes of interaction with the devices where VR right now has remote controls that you need to use to interact with the environment, and you have to walk around to see the full environment, which for all quadriplegics, there's no really way to do that. So I'm trying to make that aspect accessible for that population so that they can have access to those virtual life-like immersive experiences that can tie them to the things that they used to love or would love to do one day.

Lindsey Dinneen: Yeah. So essentially taking some of the existing tech, but putting it into a new method of delivery, I suppose? So that folks who can't, like you said, walk or that can't necessarily interact through a series of controllers or something like that, would be able to still experience those wonderful, immersive things. Is that...

Zoe Lalji: Yeah. Yeah, exactly.

Lindsey Dinneen: Ok. Wow. Yeah. Oh my goodness. Okay. This is so exciting, just to hear all about this. I know that you are still pursuing medicine and then now you're also pursuing this sort of tech side of things. I understand the background of you coming into it and why, but how have you found these interactions? Have they played out easily? Has it been an odd transition, or how has that all worked out?

Zoe Lalji: Yeah, as you can imagine, it's like I have two sort of big things that I love and I'm passionate about and they both take a lot of time and effort and energy. And to say the least, it has been difficult to prioritize one or the other and find the time in the day for both. What I love about medicine is that the hope that we can bring to the patient. I love the innovation of it. I love coming up with solutions that aren't out there, that for the patients like my dad that don't see hope in existing medicine. I wanna be the hope for those patients.

And that's, that's how I feel right now. I, I know I will always love every aspect of medicine, but that's what really drives me is that notion of helping those people that are feeling the medicine has failed them, and providing them with unconventional solutions that maybe they didn't think to look for or didn't think that there was one, you know? I think that until there's a cure for some of these diseases, technology can bridge that gap of function and bring back what people have lost.

And I've seen it, I've worked with Paradromics as a BCI company in Austin and that was my first exposure since developing my startup into the, the medical technology world. And they're just such a amazing team and they have such a noble cause that they're fighting for and they just wanna help people like my dad. And to be surrounded by people that want to do that and the technology and seeing how impactful it has the potential to be. It really inspired me, especially coming from such a hopeless diagnosis that we had, it really gave my family hope. It gave me hope, and that's the feeling I wanna give to other people.

And so my plan right now is to finish out my pre-med prerequisites in college and take a gap year or two to really work on my startup, really work on things like put myself in different environments in the medical technology world, get more experience and really understand my passion and what I can offer to the field. And from there I'll really decide if an MD is the right path for me or if I want to go a different route to get a different degree, you know, and still work within medicine, but not maybe bedside and not maybe in a hospital and not maybe with direct patient care. So yeah, I think that's the route I'm thinking right now? Yeah that's the plan.

Lindsey Dinneen: Yeah. That's a great plan. And I love, I love your willingness and your openness to explore and continue to evolve, perhaps, over time in terms of, when you go into a new path and you've had this set of expectations for yourself for a while, that this is where you were going to head. And then things change and I just think it's quite remarkable when someone like you who is obviously very talented, smart, multi-passionate, is able to pivot and say, " I love this aspect, but I also love this aspect and maybe I can do both in a really creative way." I think that's fantastic.

Zoe Lalji: Yeah, I mean, it was such a difficult thing for me since I had wanted to do medicine my whole life. It was something that was so ingrained in who I thought I was. Everyone asks you when you meet them, like "What do you wanna do with your life? What are you majoring in? What's your path?" And always it's pre-med, ever since I was a kid, I'd say pre-med, and it's strange to change that. And I think what really helped me get there is my life has been so turbulent and I've had to really get used to things not being how I planned, you know? And like that with my dad's diagnosis, throwing us into a spiral. And then after that actually, the gap year itself was another event that I had not planned for.

I had decided to take one because my dad really needed me, and I found in my value scope that really came first before anything else. And then it became a serendipitous decision because in December, after I had taken my gap year, my mom was diagnosed with breast cancer. And luckily she's cancer free now, but we had to go through chemo, radiation, surgery and I could not have dealt with that at college. I had to be home, I had to be with her. And somebody had to take care of my dad. Somebody had to help her keep everything together and keep herself together.

And I think, that was probably one of my biggest teachers is that, things are gonna happen. You can't avoid change, and I think that was really difficult to realize that maybe my plan wasn't the right plan for me, and maybe I need to take a second and let myself sit in the ambiguous unknown, which is really uncomfortable, but sometimes it's necessary in order to figure out where you really belong. But yeah it's definitely not easy. I definitely have not figured everything out. It's definitely some days I'm like, I just want to go back to the known, it's so much easier. But yeah, I think it's just getting used to the unknown and getting used to change.

Lindsey Dinneen: Yeah. Yeah. And kudos to you for that viewpoint. And I'm sure, I'm sure some days are easier than others. I certainly understand that. But seriously, kudos to you for being willing to adapt to changing circumstances that you didn't plan for and you wouldn't have wished for, but this is really amazing to me as to how you've taken something that is so incredibly difficult and challenging, but you've really embraced the challenge-- and maybe that was a long time in coming-- but you've embraced that challenge and then you're not just helping your own family, which is incredibly important, but you're doing work that's gonna help so many people. And I think that is just amazing. Thank you for doing what you're doing.

Zoe Lalji: Absolutely. Like you said, it definitely was a long time of really a lot of self-awareness, a lot of self-work, to get to a place where I was ready to embrace it, like you said, like it's something that has been difficult, has been so trying on our family, so trying on my dad. And a lot of days I am like, why did this happen? And I feel a lot of grief and a lot of sadness and unwillingness to embrace it. But for the most part, I've reached a point where I've realized that this is something that we've come a long way from, and we try to make the best out of the situation and make every day as bright as we can, given everything. And that's all we really can do.

And I think watching my dad overcome it himself has been just what has given me the strength I need to get out of that sort of pity, out of that grief of like, why me? Why has this happened? And anger because when you think about what ALS patients go through, it's like you just can't even imagine what it could be like to be in that position. And to watch my dad really take that in stride and be this ferocious warrior through it and keep fighting no matter what life throws at him. He's almost at six years since his diagnosis and he's still fighting and he's still finding a reason to smile every day.

And when I think about that it reminds me that it's okay. If he can fight like he's been fighting, then we all have that strength in us and that's, I think, what inspires me to want to help people like him, to want to bring more light into others' lives that are going through what we've gone through. And I think it's our duty really. I think I've gotten a very unique experience to watch somebody rise from the ashes and learn from that and I think that hardship, it sucks, and I'm not gonna say it doesn't at all like it, it does suck. All of it sucks, but it's an opportunity to learn. It's an opportunity to grow and it's an opportunity to become the best version of yourself through it.

And there's moments when you don't want to learn , you know, you just, "I'm done with the lessons," like "I've had enough!" I think at the end of the day, it's like everything that I am and everything that I've learned it's valuable, regardless of what I have to go through to get me here. It's who I am. And so I think the best thing I can do with that is use it as a way to empathize with others in a way to really understand what's needed and how to help people that go through similar things that I've seen with my dad.

Lindsey Dinneen: Yeah. Yeah. That's absolutely beautiful. Well, I'm wondering is there a particular moment or perhaps series of moments that stands out to you because it clearly confirmed that this was the right career path for you, even though it's been a bit of a meandering one, a pivoting one. Is there any particular moment where you thought, "Okay, this is why I'm here."

Zoe Lalji: Like you said, it's a lot of moments. I mean, I would say the first moment was definitely when my dad was diagnosed. But even then I didn't really make that shift of " I'm definitely gonna do this for the rest of my life." It was more of a shock where I realized this is something I really care about. But I think really working on my startup has been so empowering. And then also my internship at Paradromics. I think the main moment that recently has made me realize that kind of clarify what exactly about medicine really drives me is I was invited to speak at a brain computer interface conference at the Chamber of Commerce. And through that I met so many key players in the the ecosystem. And I spoke to a lot of them about what I was passionate about, what I was doing, my story.

And it was remarkable to me that so many people really cared and it was so obvious that everyone genuinely cared about the patient and about helping that person. It wasn't about the product, it wasn't about the business. It was about how can we help people the best way that we can and how can we use the potential of this technology to really help people's lives. And I think that energy and being in that space of like people just wanting to help, that was just so new for me because I think when something happens like that, you feel so incredibly alone and nobody could ever really help you, and it's like there's no hope.

And people can try to support you and they can try to take care of you, but there's no way that they can actually help. And then even from the medicine side, there really wasn't anything there. And to enter into a room where so many people were making things actively that could help, for me as a daughter of somebody that was going through it, it wasn't so impactful and it made me think what about for others that are like me or for others that are like my dad to be exposed to this world of increasing potential and technology. And I was like, this is where I wanna be. This is home.

Lindsey Dinneen: Wow. Yeah. That is a very powerful story. Thank you for sharing that. I have been personally so inspired by people in the medtech industry and healthcare because, you know, you start talking to them and it's easy to see how much they care. It's like you said, it's not just about the product, it's not just about the business, it's not about making money, although everyone needs to to make a living but it's about truly helping people, and I think that's just one of the most inspiring things that I have personally gotten to witness by meeting truly remarkable people through this field. That makes sense to me that, that was a moment that stood out for you. Well, that's amazing. Well, I'm curious, so you're in a really interesting new phase. Yeah. And I, I'm curious as you continue to develop your startup and whatnot, how would you define leadership? Or what does leadership mean to you?

Zoe Lalji: I think for me, and from my experience with it, leadership is really about empathy and understanding your team. And the analogy I would use is like a wolf pack. The leader of the wolf pack is always walking behind the pack and making sure nobody gets lost and making sure everybody has purpose and a destination. And I think that as a leader, it's your responsibility to make sure that the team is whole, in a way, where everybody on the team-- you understand them enough to know their strengths and to know their tendencies and set them up to succeed and set them up to benefit the full team and have everybody on the team feel like their strengths are building the team into the best version of itself.

And I think having that ability to really understand people really qualifies someone as a great leader. And I, I would liken a leader to a mentor in a way, because it's not about you, if you're leading a team, your success is the team's success, right? And your goal is to inspire success in each of the individual people on the team so that the team can be greater than the sum of its parts. Because everyone's strengths play in a way that they add to each other and compliment each other.

And I think from what I've found is that when people realize that you truly understand them and you see what really makes them unique, they're more willing to devote those strengths to whatever cause you're going for. And they're more attentive to the goals you place for the team, the end goal. And I think another thing that a leader really has to do is understand the why of the team and really show that or really demonstrate that to the team and align them under the same why. Because I think what makes a team really unique is their ability to align themselves under that goal and all fight for that goal together. I think those are two things that I find are really important in a leader.

Lindsey Dinneen: Yeah, absolutely. Agreed. Yeah. So pivoting a little bit, just for some fun. Imagine someone were to offer you a million dollars to teach a masterclass on anything you want. It can be in your industry or something you're working on now, but doesn't necessarily have to be, what would you choose to teach and why?

Zoe Lalji: Wow. That is a fun question. Wow. Okay. I think I would probably want to teach a class on self-awareness through hardship. I think that is one of the biggest things that I have struggled with especially when I think in my gap year was the biggest moment where I realized, I am really defining myself as a caregiver. I'm defining myself as someone that cares for others because I did that every day. And it was so difficult to have my own identity, to have my own sense of self, and I think that really finding that balance of what do I need to be the best version of myself and to do the best for others because of that.

I think that journey for me of really finding what's important to me, reprioritizing, because I think moments like these shift your priorities so much. They shift your view of the world. They shift who you are. And to catch up with that is there's so much change going on in your life to keep a pulse on you and who you are, what you stand for, is so incredibly difficult. And I think if you're not careful and you're not placing importance on that, you become misaligned and you don't live in your true values. You don't live within your true values because you don't have that alignment within yourself.

And I think, once you've gone through a phase where you've completely lost sight of that and it's a phenomena with caregivers that we tend to forget about ourselves completely. And we place focus on others, on the people we're caring for. And I think in my gap year with both of my parents needing me to be there for them, it made me feel like this is more important, right? Because before the diagnosis with my dad, my highest priority was always family. And caring for others and giving back was such a huge thing that had been instilled in me, and it's still a huge priority for me.

But I never had to take care of myself. I never had to place importance on that because there was never a point where I was gasping for air and gasping for care. And I think it also just felt like I didn't know who I was anymore, and that's such a terrible place to be in. And that's why I can say that for, for patients that undergo this, it's that to a totally different extent, and that goes back to my VR project. But I've done so much, coming into college and really getting the space to put myself in different scenarios and see who I am.

 I think that sitting with myself and taking that time and doing that work has really allowed me to be there better for my parents, be there better for my family, because I'm just more aligned. I'm more me. And being around my dad when I'm not even me is not helping him. He wants to spend time with me. I think when you neglect yourself, it's hard to be you, you know, it's hard to explain, but I think just having that alignment through something so pivotal in your life, something so earth shattering that happens to you, that kind of shifts who you are. And keeping track of that shift and keeping yourself in your care and treating yourself as a child, because you are. You have to nurture your inner child and really take care of that child and not think that child is perfect because they're not.

And the thing about this particular class would be that I haven't figured it out. But I have done a lot of work and I would want to help people that are trying to navigate that because I feel like there's been a lot of trial and error and if I can help people in any way with my experience with it and what's worked for me, and how I went about figuring out what works for me, I think finding that balance within such a all-consuming situation and hardship, that I would wanna help people through that. That's been monumental for me in realizing that myself was important, in defining myself and being aware of myself and who I was. And so yeah, I think realizing that was important through all of this hardship. I think that's one of the biggest learning moments for me, and I'd really wanna share that.

Lindsey Dinneen: Yeah. Yeah, absolutely. And like you said, there are so many people who are going through similar things that could really benefit from that. So that would be an amazing masterclass. So I'll look forward to that whenever that comes up. What is one thing you wish to be remembered for after you leave this world?

Zoe Lalji: Honestly, I feel like my impact will be in the lives that I've impacted, and if I can be remembered as a friend, as an advocate, and as a mentor for those people, I would be fulfilled. I feel like I would just want to at least help one life that needs that guidance, you know, that feels so alone and feels so hopeless, to bring that small amount of hope, even if nothing at all. And I think where my fulfillment comes is that I want to help people like my dad, people like me, people that have been struggling, that can't find what way is up, which way is the light, either guide them or provide them with some semblance of hope. Or just be a friend, or just be support. Because coming from someone that's been there, coming from someone that can empathize and make them feel like, "Hey, you're not alone. It might feel lonely and it might suck, but you're not alone."

Lindsey Dinneen: Yeah. Yes. Absolutely. That is very powerful. Final question, what is one thing that makes you smile every time you see or think about it?

Zoe Lalji: Well, I think that one is easy because it's my dad. He's my inspiration. He has so much light within him that only comes from overcoming something like this. And his energy is just so incredible, and he is the reason I keep doing what I do. And I think also, the memories I have of him, the memories of him as my father when I was a kid and things that he used to do with me and things that just really showed that he loved me so much. And those memories that are just so sacred to me and every time I think about it, it's bittersweet, but it always makes me happy to remember what he means to me.

Lindsey Dinneen: Yeah, absolutely. Well, Zoe, oh my gosh, you are so very inspirational. I would not wish the path that you have taken on you in the way that it has happened, but I just admire you so much for taking a very hard path, but making so much good come from it and embracing the light and embracing choosing to help others see that light and see hope in a difficult time. Gosh, I cannot wait to continue following your work and seeing what you do because I know you're gonna be impacting a lot of lives. Oh my gosh.

Zoe Lalji: Thank you. Yeah, and I really loved being on your podcast. I loved talking to you. This form is amazing and I can't wait to see what other amazing speakers you get on here.

Lindsey Dinneen: Awesome. Well, thank you, and we are so honored to be making a donation on your behalf as a thank you for your time today to your family's organization, which is ALS Heroes. This organization honors the heroes amongst us who have stared devastation in the face, only to say, "you do not define me." The organization hopes to guide those heroes in navigating their resources and provide them with hope in the midst of a seemingly hopeless disease. And I'm so excited to continue to learn more about the organization and how we can get involved. So thank you for bringing our attention to it, and thank you again for being here. We wish you continued success as you work to change lives for a better world.

Zoe Lalji: Thank you so much, Lindsey. It's been a pleasure.

Lindsey Dinneen: Absolutely, and thank you also to our listeners for tuning in. If you're feeling as inspired as I am right now, I would love it if you would share this episode with a colleague or two, continue to pass along the word, and we will catch you next time.

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