Carolyn Koppel founded Aaron’s Coffee Corner while sitting with her son Aaron in his hospital room. Her mission is to provide 24/7 access to free Keurig coffee to the family, friends and caregivers admitted to the Pediatric Intensive Care Unit of Ann & Robert Lurie’s Children’s Hospital of Chicago.

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Passionistas: Hi and welcome to The Passionistas Project Podcast. We're Amy and Nancy Harrington. Today we're talking with Carolyn Koppel, the founder of Aaron's Coffee Corner.

Carolyn left a career in Hollywood to return to the Midwest where she worked at the Shoah Foundation and Oprah Winfrey's Harpo Studios. Most recently she founded Aaron's Coffee Corner, while sitting with her son, Aaron, in his hospital room. Her mission is to provide 24/7 access to free Keurig coffee to the family, friends and caregivers of patients in the pediatric intensive care unit of Ann and Robert Laurie's Children's Hospital of Chicago.

So please welcome to the show, Carolyn Koppel.

Carolyn: Hello. Thank you.

Passionistas: What's the one thing you're most passionate about?

Carolyn: I feel that of course, right now I'm passionate about this project and getting coffee to people that really could use it, but I think in general, as I look back on my adult life, I've tried to work with organizations and people that do good, which I didn't really think about, but it turns out that it's a running theme in my life and I'm pretty proud of it.

Passionistas: Why do you think you're drawn to projects that help other people?

Carolyn: I think it's just my upbringing. I think I grew up pretty happily and my parents were always very kind to people and I think that my family has nurtured that. And as I went through middle school and high school and college, it's something that I carried with me. I think it's just my upbringing. I'll give that credit to my parents.

Passionistas: How does that translate into what you do in your day to day life?

Carolyn: Well, right now my day to day life is nothing that I thought it would be like 14 years ago when my child Aaron was born. So over the last few years I've thought about what can I do? Should I get a job? How can I get a job? Because there's a lot of medical appointments and there's a lot of time off if parent gets sick, how do I tell people that I need a really flexible job that can allow me to care for my globally delayed and medically fragile child?

So it's been a journey to try and find something that I can do. And along the way I've volunteered on a parent board, um, for a local organization here called North suburban special education district, which my son is a part of and has been a part of. And I slowly got back into the idea of filling my time, trying to help somebody else because after you're in a situation like I am, it takes a long time to kind of settle into your life. And I think that just over the last few years we've had a little more regularity so you can kind of look outside of what your craziness is and say, Oh, other people have it worse than me. And I think that when I started going to the hospital, I think that played a big role in how I was going to handle life with Aaron.

And that I always looked around when I was in the pediatric intensive care unit and thought, Oh my God, look at these people. They have it so much worse than we do. And I think that always rang true that no matter how frustrating and how difficult and how ludicrous you feel your life is, somebody has always got it worse. So it took a long time to kind of get to the point where I'm like, okay, well it's always going to be like this. Let's see how we can help other people because now I have things a little under control and let's open it up and see what we can do for others. And that started to happen about four or five years ago, but I couldn't really find what I needed until I was so frustrated in the middle of the night in a hospital room that I couldn't find some coffee. And that's really how we got here.

Passionistas: Let's back up a step. Tell everybody about Aaron and why you're in the hospital so much.

Carolyn: So my son has something called dihydro perimeter ING dehydrogenase deficiency. And it's not necessarily uncommon to have this disorder, but it is to have it from birth. So his symptoms started showing very early and at about 18 weeks he had a seizure and then we knew something wasn't right. And we took ourselves to that hospital and we needed to get transferred down to Lurie's children's because they didn't know what was going on and they had to get the seizures under control. So this disorder was known to people. And when Aaron was admitted to the hospital, he was there for about, I think the first time, about eight days. And they just did a battery of tests and they were trying to figure out what was wrong.

And they did EKGs to see about his seizure activity. And they took all kinds of blood tests and one test from that very admission kept coming back positive. And I remember that genetics factor coming in and saying, well this is something we're going to have to test again because I've never seen it in my career. So we're gonna send it to the Mayo clinic and have the, his blood tested it and then we're going to see what they say. And then it came back from the Mayo clinic and they said there's one man in the Netherlands that's doing research on this particular disorder. You did test positive for it and can we have blood samples from your whole family and urine samples and send them to him? And when that was confirmed, we knew what his diagnosis was. So a lot of kids that are medically fragile and globally delay, they don't have any kind of diagnosis.

So we were lucky right there that we had something to hold on to. And the way that we knew that this was what he had was because there was a drug called five plural are soul, that men in their forties when they get prostate cancer, sometimes we're treated with this drug and it had horrible side effects including death. So this man in the Netherlands had created a urine test that could test before they had this treatment to make sure that they can get it. And that's the test that Aaron kept coming back positive for. So they pulled it back around and they said, we don't have very much information on this disorder, but we know that children haven't lived past the age of three. So that was his diagnosis and his prognosis very early on, at around under a year. And that's a shock. Let me tell you what he suffers from I guess.

So he has epilepsy. He suffers from unmanageable seizures. He's globally delayed. He is not verbal and he is non-ambulatory, which means he is confined to a wheelchair. He doesn't really have the use of his limbs. So I guess he would technically be classified as a quadriplegic. And he has excellent hearing and a really good sense of spell. So he's fed through a G tube. He's on a number of medications, which he also takes through his G-tube. And as a result of the disorder, besides the epilepsy, he has lot of pulmonary issues, breathing issues. He's had pneumonia a few times. And one of the many reasons we've been in the hospital so often is that it doesn't take very much for him to get. And when he does, he has a really hard time recovering from it. So he's just a really sick, handsome little guy, you know, and, and he's just a love.

He recognizes voices, he smiles when he's happy, whether you know why he's happy or not. It's always good to have him smile. And I think that he is surrounded by so much love that he emanates it back. He really is a lucky kid and we're lucky to have him.

Passionistas: We're sorry that you've had to deal with all that.

Carolyn: Oh, it's okay. It's all right. It's turned out to be a pretty good life unexpectedly.

Passionistas: Let's go back and talk about your path to getting to here. So you studied journalism at the university of Wisconsin Madison, and what were your goals at that point when you graduated and what did you do?

Carolyn: Well, my goal at the university of Wisconsin was to get out of the cold when I graduated. And my parents had already had that idea and they deserted me while I was living while I was in college.

So they took off or Arizona and I went and shacked up with them for a year and I worked as a stringer producer. So there was a company in Arizona and we would do work for the Phoenix suns and for lifestyles of the rich and famous and for ESPN and all those kinds of stringer things. That was anything that was happening in entertainment tonight. Anything that was happening in Phoenix, we would run out and do a little bit and I would be the person holding the little microphone and asking the questions off camera. And a friend of mine had already moved out to California and she's like, well why don't you come out here? And I'm like, okay.

And I had another friend from Arizona that happened to be going to California for a summer program and she and I ended up being roommates with a couple of other girls and I got a job. I was, the first thing I did is I went to limited express to make sure I could work for them while I was there cause I had to have a job. And I had done that on and off. Like through school I had worked at limited express. So that was my first thing. And another friend of mine said, well why don't you come in and interview and see if we have a job for you at Viacom? And it was via con television. And at the time it was Dean Hargrove and Fred Silverman and they were doing all of these shows that old people like “Jake and the Fatman” and “Matlock” and “Perry Mason” “Diagnosis, Murder.”

It was awesome. And I ended up working for a woman who was the script production office manager, Donna and I was a script coordinator. So the first thing she had me do was learn how to type better because my typing skills were not up to par because I thought I'd be a broadcast journalist. From then on I was in a pretty good place. I was like, this is cool. I have a great group of friends, we're all in it together, we're all starting out. And it was a really great experience and I had done that for about four years. And I remember a friend of mine asked me to go see a movie and the movie was Schindler's list and I remembered that at the end of the movie we were on the universal lot and we had seen it in a screening room. And at the end of the movie it said that Steven Spielberg was starting a foundation to interview Holocaust survivors.

And I was like, Oh well, if I remember correctly, he's my neighbor on the universe a lot. So let me send him some universal mail with my resume in it and a letter. And that got me introduced to the show foundation. And by then I was in California for five years and I was known as the crazy aunt from California. All my nieces and nephews were being born. It was like a machine out West out East. And I was like, I should see if I can give them an idea and see if they'll give me a job. So when I sent them a letter, I said, I really do believe that you're going to be wanting to locate in Chicago, Illinois and I'm from the Midwest and I'd be more than happy to run your production office from Chicago. And they said, well that's a little far off because you know, we're in one trailer in the back of Amblin entertainment right now and we have to get set up here.

And I said, well, I'm happy to volunteer or whatever you need. And so eventually I volunteered there and they offered me the job in Chicago. So I became the Midwest regional coordinator for the show foundation. And that brought me back here. After that project was over, I went on to Harpo and an interviewer that was working for me on the show foundation said, Oh, you should meet my friend at the Oprah Winfrey show. She's a producer. And I said, okay. And I had coffee with her and I told her what I did and she went back to the office and told her, her boss, one of the producers and said, you know, you're starting up this new project, maybe she's the one for you. And I went in and I interviewed for that job and I got it. And it was the very beginning of Oprah's angel network, the original version of it where we raised money for kids to go to college and we built houses with habitat for humanity.

So between the Shoah foundation and recording these visual histories of what had happened to these people during the most horrific period of time in their lives, and to show at the end how they've survived and how they've created new families and continue to do good in the world. Then to go top Harpo and give back to communities. It was just kind of a theme I was on and it was great and I was like, okay, what's the next thing? And I had been at Harpo for a little while and the angel network had kind of morphed into something else and they were opening up Oprah online, they creating their own website. So I moved over to that website and I helped them start that website. And I learned a lot about things that I never thought I would know about, like HTML and all that kind of stuff and how to create a website.

But it wasn't really hitting the Mark for me. And I enjoyed my time there, but I had met my husband by then and he's like, well go look for a different job. And I think he found out about my next job, which was for adventure, which was an educational technology company right in the middle of the bubble. It was all very exciting and I was the operations manager and it was great. And then the bubble burst and I was four months pregnant and I look like I was eight months pregnant and one of those people that as soon as I got pregnant I looked like I had been pregnant for 17 years because I looked so pregnant at the beginning and I was like, I can interview for jobs because who's going to take a pregnant woman? And then I had my first child and everything was working out all right, we bought a house, my husband was working, did I really need to go back to work?

Not really. I was lucky and I did some work here and there and a little production work and then Aaron was born and that's when things kind of took a little different path. And so I became the primary caregiver and I think all of those lessons that I learned from all of those jobs, I think that's the secret to really getting through life is to remember what you've learned and bring a little of that to your next project and bring all of that to your next project and to build upon it. And I think that by the time Aaron came, I kind of knew this was going to be okay and it's not horrible, but we don't know what's going to happen. And once he hit three years old, we started having a birthday party every year. We just had his 14th birthday party and my backyard this weekend.

And I'm telling you, there's tons of people that come in there, his therapists and doctors and nurses and our family and friends that have supported us for 14 years, you know, that have gone through the highs and the lows and the hospitals, hospital visits. And I mean it just makes you realize how lucky you are. I think that they always say maybe a Maya Angelo says it. If you find it in your heart to care for somebody, then you've succeeded. So if you keep your heart open and you try and do the best you can for somebody else, you're going to get through the next door. And that's kind of how I got to where I am. I just, I love being in broadcast journalism, but I really loved helping other people and being a part of a bigger project and I think that's just the path I took, which turned out to work well for me. And I'm using all those skills now. So it's pretty remarkable.

Passionistas: We’re Amy and Nancy Harrington and you're listening The Passionistas Project Podcast and our interview with Carolyn Koppel. To learn more about her mission to provide 24/7 access to free curd coffee to the family, friends and caregivers admitted to the pediatric intensive care unit of Ann and Robert Laurie's Children's Hospital of Chicago, visit Now here's more of our interview with Carolyn.

Passionistas: How did the day to day skills you learned when you were in production apply to your life now?

Carolyn: We're going to take a little downturn for, for a minute. And I say that with as light of an attitude as I can, but when you're told that your child is not gonna live past three, so for those first few years, you're not sleeping, you're listening for him to breathe and not to have a seizure every night. And then when you wake up in the morning you're like, Oh my God, we made it through the night. You know, cause you always think it's going to be nighttime when something happens and you're gonna walk into that room and something horrible will have happened and there goes on for many, many years. And once he hits three, you're like, how long is it going to go on? How do you plan for it? So you're going to be here one year and then gone the next. It's like when you get classified, you get the hanging sticker that says you're driving a car that has a handicap ramp or something, that little hang or the blue one.

And then they're like, you know, well maybe you should have a license plate. And I'm like, no, because if I get the license play, maybe that's like superstitious and then something horrible is gonna happen. So there was a lot of that year after year, like I didn't want to think too far ahead, but here I am with a ramp van with a license plate that says we're handicapped. So you have to jump over those hoops to get where you are. And I think that's just a positive attitude. If you let go of what you think you're supposed to be doing with your life and then you're going, okay, well what am I supposed to be doing with it? Every time you do that you get a little further down the line. And I think I took that from all of my experiences in working with people and just volunteering and stuff like that.

So I think I might date today. It really played a role in just moving forward everyday move forward and see what happens. And here we are. I mean it's kind of worked, you know, we have these moments where he gets RSV or he gets pneumonia and we're in the hospital and we are at that point where people are talking about do not resuscitate letters and what do we have in place to move ahead with his treatment? Or do we put a breathing tube in so he can recover from his illness? Or is the breathing tube something that's keeping him alive? Like is it because of his underlying disorder that he needs some breathing tube? So you're making those distinctions and you're looking at your child who's on all kinds of machines in a hospital and you're like, okay, what if we have to bury him next week?

And those are not the kind of thoughts you want going around your head. But it's very practical and I'm a Capricorn and that's how I think. So I think the first thing that we did when those things kind of started happening, we were concerned about my older son Eli, who's 17 now and terrific and I was like, who is he going to talk to if something happens to Aaron? Because he's not gonna wanna talk to me or, or my husband stuck. I don't want to touch him. My sister, he needs like a third party. And I remember doing that early on, he was probably eight or nine and I thought, okay, we have that taken care of. We have a place for Eli to kind of process his feelings, but we have to, um, plan for things that you just don't think you need to plan for. And there are things that people don't want to talk about.

Like you just have to, uh, compart mentally maybe and say this is where he'll be buried and when it happens, this is how we'd like it to happen. But those change, all those things change as you go through the process. I think that just understanding that it's going to be okay. You don't have a lot to do with it. Right? And you just have to understand it and not accept it, but understand it and move through it because it sucks. Don't get me wrong. So I think that's what gets us true to this situation where I was like having a little self pity party and I was really upset that I couldn't find some coffee at 10 o'clock at night. What's wrong with that? And it was really frustrating and that's at one of those times when you have a sick child, you kind of know that something's happening, right?

Like he was not his normal self and he was having seizures that he didn't usually have and he was having some seizures that he hadn't had for a long time. So things were changing and you know that it could be growth, you know, it could be diet, it could be age, they have all these reasons for all these changes to happen and you end up going into the hospital a couple of times a year to have things checked out and that's where we end up. We end up in the hospital because everybody wants to help and the best possible way, except when you go for an EEG and people don't realize that there's a lot of times when you go into the hospital and you don't have full nursing care, you're on a floor and you're there and he's having all of these electrodes attached to his head and you're responsible for hitting this little alarm when you think he's having a seizure.

So they can watch the video and look at the EEG printout and kind of determine if it's a seizure, if it's neurological, if they can say that it's a seizure or not and how to treat it, but you're the one for three days. In Aaron's case, we were there for three days this last time so we could be sure to catch what was happening and you're the one that's for doing it. You give him his meds, you are awake, you're watching the activity as it goes through, and then when you go to bed, there's somebody that comes into the room and watches it on the camera so you can't leave the room. You can't go down to elevators to get a cup of coffee or one elevator to go to the cafeteria because it's not open and room service is closed and then you just getting pissed, right?

You're like, I have to stay up until midnight to turn him his last time. So Aaron, since he doesn't move, has to get moved every few hours. And the longest time that he sleeps on one side is from midnight to about six in the morning depending on when my husband wakes up. So I always have to stay up until midnight. And I was really frustrated and I'm like, why isn't there coffee ever in the hospital when I need it in the mornings before the rounds happen or the doctor start check again at seven o'clock in the morning and I've been up since five, why do I not have little more access to that? And I started thinking about it and I thought, well let's ask Keurig to help. And so that night, I think it was 10 45 I wrote them a letter and I said, it's 10 45 at night and I can't get a cup of coffee and how can we work together to make that happen in the hospital.

And I had big visions of every floor having a Keurig machine for the families and it would be great and super easy. It seems so simple. And the rest of our stay happened. I wrote the letter, I put it aside, I went back to my job as seizure alarmist and couple of days later we went home and I'm like, Oh I wrote that letter, I should go read that letter. Maybe I'll send that letter. So I went back and I read it and I told my husband that I had written this letter and that I'm going to mail it out to the CEO of Keurig. So I did and I didn't hear from anybody and I was like, maybe I should send it to like the whole board of Keurig. So, cause it was Christmas time and who's really reading their mail and they're probably all off on vacation.

And so in January, I think I sent it to all the board members listed on the cure USA website. And in February I got a phone call from this man, so I'm looking for Carolyn capital. I said, does this Carolyn? And he said, this is John Barrett from Keurig. And I'm like, it is not John Barrett from curate. And he's like, yes it is. And I was like, I was just trying to figure out how to start a fundraiser at Lurie's and how much a pure coffee machine would really cost. I'm doing all the research right now. And he's like, well, we'd like to help you out with that and as like you are kidding me. And he's like, no, whatever you need, figure it out, we'll help you. And so from that point I was like, I had already been complaining to people for two weeks and making sure that I was in the right.

Nobody was going to disagree, that I don't deserve coffee when I want coffee. And I was getting a lot of really good feedback. I could have been because I was a little aggressive, but I knew that I was right. So I got in touch with Lurie's and I said, listen, I have this offer from Keurig and wouldn't it be great if we could get a machine on all the floors? And they're like, hold on there we are a huge hospital and we got to figure out if we can do it. And I, I got a few notes and this is when you learn that no is just the wrong answer. And if you keep complaining and keep talking about it, somebody is going to hear you and say, Oh well why can't we just try that on one floor? Because I had already gotten it down to that.

My big dream had come in like how about a pilot program for three months? Can you give me that? And they're like, I don't know why we can't. That's a really reasonable thought and let me explore what we can do. So when this was all happening, it was my son's 13th year and in September I knew we were having a bar mitzvah. So in my mind, without telling a lot of people when I was up to, I was like, Oh, that would be a great way to kick off Aaron's bar mitzvah. You know, if people want to give money, we've always given money to make a wish. When I think Aaron was five, so Eli must've been around 11 we went on a Make-A-Wish trip and it was to this day, the best trip we've ever taken, I'm very grateful for that organization. And at every birthday for Aaron, we've always asked people to donate to make a wish.

And I thought they've gotten enough money from us. We've paid that trip back. We sent a few kids on their own. We are all good with them. Let's see if we can switch directions and put our energies into this project. And so I had all of this formulating in my head and I kept getting no. So there were a few more phone calls and then one woman, Barbara Burke from the founders board. I think at Lori's called me up to give me the final no, and I kept her on the phone and she's like, I'm going to find out why we can't do this. I have a Keurig machine in my own house. It's very easy. I'm like, I know. So what's more? He got on board, it moved really quickly and we were able to set up a website through Lurie's about what we were doing and we were able to get it all done before labor day weekend in September and at his bar mitzvah I got up and told people what I was going to do and all of a sudden people were donating and people were sending me pictures of how they were using their mugs because everybody got a mug at the bar mitzvah and they'd fill up with pants or they'd show me their copy and I had an enormous help from, she's down my social media coordinator, but she's been Aaron's babysitters since he was one years old.

She just said, we should put it online and this is a social media thing and you need an Instagram and a Facebook and a Twitter. And I'm like, I don't know how to use any of that. She's like, I'll teach you. And from that moment on, we've really snowballed when I was first formulating, and in my mind, people are going to give you money to give coffee to people. It's not for research or it's not for, you know, blankets or something for the kids. And I'm like, I'm done with the kids. Kids get tons of stuff. I don't think people realize that it's the whole family is part of the experience. And if you can bring a little comfort to the family in the smallest of ways, it's gonna make the biggest difference. And I always felt like if we could help the families, we were helping the child because you create less stress, you create a little peace of mind and it makes you better at navigating all of this unfamiliar stuff.

All of the machines. Your child is all of a sudden hooked up to the medicine that I V bags, the noises in the hospital, the family that wants to desperately do something for you and they don't know what to do. You know, these are all ways you can help the whole community that supports you to make it a little easier. And I, I think it's a great idea and I just wish, you know, we can take it to a second floor and then a third floor and eventually as we continue, we can create grants for smaller hospitals. Set could use a Keurig machine, maybe don't know, pick you because they aren't big enough to have a pediatric intensive care unit, but maybe in their emergency room, you know, maybe we can spread a little bit of the comfort and help a lot of people. It doesn't take much.

And I think the simplicity of it is really what's people are like, wait, what? You're just going to give them some coffee? I'm like, yeah, yes please. I think that people don't realize one in the hospital, it's expensive. So let's say that all of these years, until about two years ago, we got a Illinois medical waiver. So it helps us with everything. Like the 20% the deductibles, it goes through our insurance and then it goes to this waiver program and they help pay for it. So for the first 12 years we paid to have our house redone so we could have a wheelchair in the house. We had paid for diapers for 12 years. Those are big diapers and they're not like little Pampers. You can run to the store for wipes, gloves, you know, Chuck's for the bed, we have a really nice laundry machine because we do it all the time.

We've spent all this money that people think, Oh that's like everyday kinds of stuff. But I don't think everybody has like a $700 a month bill for one medicine every month. Right. And they think, Oh well you have insurance and that's with insurance. So it's like paying for college but not saving for college for all of those years. And you're trying to save and you're trying to move money around. And that is stressful on its own. So these people that find themselves in the hospital in an emergency that we're counting on that. Like I been doing this for a long time. I know that when I used to go into the hospital and I got up $536,000 bill, I needed to pay 10% of that to the hospital. And that's a lot of money. So for years I was on a constant payment plan and I think that people, one, they need to know about those payment plans.

Any hospital will take a payment plan and you should ask about it and get on it and only give them what you can afford. If anything anybody hears today, that should be it. But it's stressful. Money is stressful, sickness is stressful. So when you have those things mixed together and you find yourself in a hospital and you're like, can I really afford a $4 cup of coffee at Starbucks down the way? Maybe not. Maybe I could get a free cup of coffee down the hall and be back in time to talk to the nutritionist or the doctor. That's coming around. And if I'm gone for a couple of seconds, the nurse can say, Oh, she just went to get a cup of coffee. She'll be back in moments instead of finding out where the doctor is on the floor and what time rounds usually are, and then to rush out, get your copy and something to eat and then get back to your room so you don't miss anything.

It's a whole different like universe inside a hospital. And it's even more difficult and unnerving to be in a PICU because a pediatric intensive care unit, just like when adults go to an intensive care unit, things are not good. So the best day, and I've said this before in the PICU, is the day you leave the pick queue and you want to leave the PICU. So it's just a different way of thinking of it and really simplifying it and saying, we appreciate what you're going through. We been there, we're a family that has experienced it, and we want you to know that it's going to be okay. It might take a little while. The journey is a long one and you just gotta stick with it.

Passionistas: Is there one lesson you've learned so far on this journey that sticks with you the most? If you have a good idea and you hear no a lot, that you should take a risk and just keep trying for yes.

Carolyn: I think that's a really big lesson to learn and that these things take time. You know, it takes a long time for somebody to say yes and it's worth it at the end when you hear yes, just don't give up. It's not anything great, but it's hard to do in practice is to not give up and just not take no for an answer. Because when you don't stop, there's going to be a door that opens up and somebody's gonna say, Hey, I'm there with you. And I think that's important to keep in mind and, and learn about yourself. Stick to it. If miss, I don't know. It's been a good journey. Hard, difficult, sad, glorious, fun. I mean all of those things. But it's still a journey. And at the end, we're all going to meet our end and the Aaron's going to meet it in its own time surrounded by people he love living a life that has been glorious because the people around him are glorious. What more could you ask for really? Right. So it's all gonna be good in the end.

Passionistas: Thanks for listening to The Passionistas Project Podcast and our interview with Carolyn Koppel. To learn more about her mission, to provide 24/7 access to free Keurig coffee to the family, friends and caregivers of patients in the pediatric intensive care unit of Ann and Robert Laurie's Children's Hospital of Chicago, visit And be sure to subscribe to the passion Eustace project podcast so you don't miss any of our upcoming inspiring guests.

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