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Description of the video:
My name is Bill Yarborough. I'm the Senior Director for the Center for aids STD prevention at Indiana University. And today I'm talking with Jill label, MD, who's recipient of the Ryan White Distinguished Leadership Award. Congratulations. And this event is actually the 20th anniversary of the death of Ryan White. This is a remember it's celebration of his life. And part of that event is that we awarded the Ryan White Distinguished Leadership Award to jail. And I'm using this opportunity to talk with her. And certainly the major impetus that we awarded this honor to her was the fact that she founded the Indiana University Dance Marathon, which is actually I guess the second largest Dance Marathon in the United States and has raised over a million dollars for the Ryan White Infectious Disease Center and also at the Indianapolis to Medical Center at Indiana University. But also we recognized her because the fact that she was very instrumental and Ryan White becoming accepted and feeling safe at Hamilton Heights High School in Cicero, Indiana. And so I ask you some questions about all that and how that started and how you got involved and so forth. The gel how did you learn that he was moving to Cicero? Well, you know, we are all very aware of what has happened to Ryan and COCOMO has how I personally liners. I had a phone call from the superintendent. I was incoming student body president, and I thought that was strange. Tenant would call you in for a meeting because I was thinking I would be afraid of homecoming and sure. And I went into school about a month. That was the summer before my senior year and before Ryan and moved in. Tony Cook, our principal and superintendent, table, and he said, Ryan White is living into our school. And that was the first I'd heard of it. And then not too long after that, D and E and B and Ryan moved in our neighborhoods and so well, yeah. Yeah. And so then at what point that just sort of actually get involved with Ryan and after he moved in and wash, I was first well, an initial my mom and dad said we're taking the new neighbors some cookies or no. I mean, that's how I was. Oh, wow. Yeah. Sure. We went over and knocked on the door and we were welcomed into their home. And I think we had a special connection with. I mean, right away, maybe you're a London and became evidence. Again. As I reflect back 20 years later. Now, at the time you don't realize what's going on, but everyone was afraid of aids. But of course, we had a couple of years on COCOMO. Shot had happened two years. Educationally blinking a lot more cases are being recognized. How the science and move forward might admit, but Indiana kind of took it upon ourselves to be a leader in the industry. And the former Governor owes bond was at Health and Human Services in Washington DC, was working closely with what he Myers, the State Medical Association president who was working closely with our school. So it was very well. But now we are going to educate the children and having children tell their parents should educate them for you. We'll rely on parasitic core children. And in this instance, the thought was, let's see if we can stabilize the youth first, which was really quite amazing and didn't work and work that well for when? Yeah. I think we had about two weeks where we had nothing that aids education and our school speakers and you know, the kind of things that you're here. And then when Ryan came to school, there was, I think one that came. And the child looks at the data. A. Wow, I don't know, not everyone's excited to have Ryan. Wow, Yeah, I remember from our players are carried books and so it's very, very different experience, of course, different time and a little bit, the time had gone up. Everything with brands. And the education certainly was very powerful. Yeah, good. So but of course you became friends and you spent time with him and took him to school in the car. So I mean, I guess those neighbors that move in and sometimes people get involved and sometimes they don't. Why did you get involved with this situation with Ryan and, you know what what occurred there? He thinks that open that up to you. To this day. I think Ryan's so unless inspirational human beings I've ever met and and you know, his, his mother as well. They it to be around them. You're very, you're drawn to them. They're good human beings and they have good values. That I just think riot. It was just a natural friendship on some level. I mean, writing, charming, and he was eloquent and I was very impressed that here's this young teenager who just carried this incredible burden between the hemophilia and aids associated with aids. Nine. And he just made it look effortless. I mean, he knew that he had to wake up every morning and help the other people in the world and moths. And he recognized the ignorance for what it was that he didn't have a mean bone in his body and I think and he never complained. I don't think I ever heard really complain. No, I had this really amazing sense of humor. And we do remember any rec recall a single CEO Mercer, the stuff top your head or not. While I share the funny I mean, I have many funny story I think. My favorite was there was always press at our high school to kind of share me was first high school in the country to have someone with high school. So Ryan and I would try to sneak in the school without the press C. So sometimes we drive to school for three blocks away, go right out of school because I don't know if I should tell the car. Okay. Okay. Sure. He was just I mean, you spent more time? Yes. Ryan on elasticities, Mexican food. That was his favorite restaurant. Wow. Yeah. So when you became friends, were saying that friendship grew, I guess by what you just said, your family was okay with it. Is that true? Yeah. I mean, I think my I mean, ryan definitely had a core group of friends. I think Ryan and I we were friends. Yes, definitely. We had a year the neighbor relations, but he and I are also in many I'm going to call professional situation. Sure. He was nice enough to ask me to go to several of you yeah. Sure. Traveling events. I would say testify in front of Congress. And so we often in serious discussions too long. Yeah, sure. We talked a lot about why he was doing this and the answer was always that you wanted to help other people. Sure. We had a lot of talks about life and death. We had a lot of talks of his family and his mother. And so there was a very serious also thought-provoking cyan if Ryan and I think he and I shared a lot of that because we were doing these things nationally together and so we had that kind of a connection. And you were two years old. I noticed I have a one-year-old HDL, but not the same class, your software and use freshmen or shame or when you saw him? I was a junior but I think Ryan that one year. Yeah. There was a cup with its thickness. So we've actually where we were probably officially body my birthday, not able to immerse. I think he's officially probably two years older, but with the way the birthdays fall, and I was a junior and he was coming. He had a lot in common relative to maybe way that personality. Maybe you looked at the world and they know somebody or life principles and that probably just really help you connect in a natural way. Yeah, Yeah. And he, he was such a leader and very charismatic, you know, when people say someone charismatic and he was, he was anyone on, walked into the room or you were just drawn and he was a very quiet just power, just naming there and people were very drawn to him. He must have been really appreciative, of course, your friendship. Did the jewelers any friends or have any negative things from this? Now, some effects I've always felt guilty. It was an amazing experience for me to go through. It really changed my life. He was an inspiration for how to be a good human being. And it was a terrible thing was going on with him and his family. And I always just I've always felt so blessed that I got to the part into new teeny and Ryan, it's there. It was an amazing time to see a disease, especially now that I'm a physician to see a disease unfold like that, you just did our first time like here, that kind of situation now his friend? Yes. Yes. And to live through that disease and then as a doctrine out and know that we've made it a chronic illness we have seen, but may come so far measure. Just unfortunately, we couldn't give that, Ryan. Oh, wow. Yeah, that's true. I'm sure you have so many memories. I mean, maybe it's hard even to select just one or two, but any sort of special situations, circumstances that that you'd like to share? One of my favorite I think one of our busiest days was the day we went to testify to the congressional aids Commission. Ryan was talking about his experience and then I was talking about how the school how we dealt with it for our school. And Bryan hated public speeches. He was such a mess in a good way, like No, he didn't want to go to bed that morning. I won't GV and I to come into their hotel room. And and so he was like, I'm not going off. And we just laugh because, but then when he would get to these speeches, he would just nail them. He was beautiful. Probably our worst experiences were on Nightline together. It's very, very intimidating and Ted couple was very nice. I put you in a dark room, a black room because they don't want one guess if somebody's like in California, in somebody's in studio. So they put you in a black room, it's about 90 degrees hot. He put a headphone on you and they shine a light on you. I was in a room, I wasn't rude and pages were singing singers towards Ryan and I. I mean, I remember, but it was also an amazing experience. But now that's half bow and they don't happen like in the same 24, 48 hours. I right. Yeah. So I mean, any of these times, did he rehearse what he was going to say? Are you guys talked about maybe potent points are well, he did spend time writing his speech, but most of the time he knew he spoke from the heart, knew what he wanted to get across. He didn't enjoy doing the interview. Yeah, But he was very passionate to help other people and to help other people with aids shouldn't prevent the suffering and to educate people. Now he had been the victim of so much, of course, many horrible things that the, at the hand of ignorance and not understanding. Even though this was an era community that was much more open and accepting, did you witness some really tough situations on like, harassment or anything? She didn't have it. I mean, I know it was it was a very different theories. And again, I think we had some time to deal with that issue. Yeah. Been done by the readers have no I really don't recall very any electromagnetic interference in our in our reality. There were still some things going on in the world. Exactly. Yeah. I think in a bad way to Ryan just hit was doing so much for the eighth world. Yeah, sure. People knew of him and I guess realized, finally, watch about anything. When people saw Ryan, it really did change how they felt about aids. And that's understanding personality air, and we understand that now, sure, we're afraid of this horrible disease. It is a horrible disease course. And so that explains a lot of land and waterways and there they didn't know how to react and that's one way they would respond to their life course. Yeah, exactly. Yeah. It was one of the first diseases we had seen in the United States in the current times with lethal the ocean very quickly elsewhere and it was contagious and yes, I can yeah, Well, disease. Sure. We didn't completely understand how their first but then yeah. So tell me a little bit about the IU Dance Marathon. How did Did you get that going? I mean, how did that I didn't even a merger or what did you even feel like you needed to do something? Well, it was really I had just driven home from Ryan's people and as you know, he died on April 8th and his funeral was a couple weeks later and it was almost finals here in Indiana. And I drove home and I got I was so upset, I actually got lost on the way home. I had to call my brother directions. I was just see uh-huh. And I drove here to the Indian or moral union and I went up to, I was an, a student government at the time, the Student Alumni Association and Jeff Jones was the Assistant Executive Director and I went to see him and he just sat down to talk to him in and he was like, wow, you know, it's really sad. Are you doing? We're talking and he was in the middle of watching some TV clips and I'm like, well, what am I interrupting? Said? Well, I'm a judge for these philanthropy events across the country in, and one of the ones that he was looking at was the Penn State has similar dance man. And just within two minutes, he, I mean, he's like We should do one of these and I'm like We should do a VR IN and he was like, I think a bit of Israeli hospital for children. So I mean, it was the day of Ryan's funeral, games together. And then really was supportive Indiana University using and 12 amazing student leaders and they came together. And now over the last 20 years it's been 10 thousand liters. And I'm very proud because one of the things that we set out to do is said that we didn't want a cookie cutter organization for students where you just get a notebook in Sharp, go have a luncheon and it's the same luncheon with the same menu every year course. The whole concept that this was, let's have students who run this thing. And they really do. And now they're raising over million dollars a year and doing it for the hospital and for children. And it's for a good cause. It really touches her heart and it's part of the Indiana The Medical Center in the course. I mean, it's I think in the end it should be very proud. Yeah, well, you should be proud of slavery in the country. The largest student in the country. Yeah, well then it's really a tribute to her idea. That's a tribute to all their work to RBI mean it's, it's a real plus for the university and I'm sure To Medical Center, it's a great thing for them. And then the OH, it's a part of a, of a way that people can really demonstrate their affection for. I hope that research continues. And in the logo for the answer on Ryan White's name is yeah, all the way he writes The obscene SHE look for it. Isn't the logo. I'll have to dig through dancers that are kind of modern-day as Ryan way while his one, yeah, You mentioned incredible store the day of his funeral. This the day the idea emerged. Well how so then what after the idea, what was snacks? Well, if it was a startup company, 11 thousand the first year, I think you're going to have to actually do it. Yeah, of course, role and it didn't happen. And so there's a whole year went by and then the next. So then we identified what we do with our time. Leaders, I can't tell if I'm with various organizations. We had the presidents from us, the other organizations and they came together. We had the dormitories, then we have the, the Greek houses and we had Independence and we had the politicians and everyone worked hours. I mean, our badly, we're all full-time students and I that we put another 30 or 40 hours on top of that week all summer long, which is off really pleased to have executive meetings for like six hours on Monday. And they still do. And how they push more time than WE DO now. Yeah. So then the first time it occurred to us when you are senior, 91. Mm. So you've got, as a student, you are a real experience. He mowed what? Onetime Yamanaka and it's probably been back several times. Yeah. I think I've missed four or five this because yeah. Of course. Children, right? Yeah. Right. But it's vessel Sarah, this, right? Yeah. Right. It and many students always remember if they're involved when they talk about their experience at IU. Medium, talk about that. And really the event is not yes, variance is sure the experience comes from behind the scenes when the students go to Riley grand tour and they see this sexual and it's yours. They may do is take all the committee members down O'Reilly. This is why we should if they meet the family, maybe kids they see with hospitals all about. There's a lot of inspiration to me and of course, there's a lot of, you know, there's a lot of meetings, there's a lot of planning, but it's the skills that you acquire when you're part of that. So the Prozac, like any event, no matter what the event is. Exactly. And I think that that is a win for everyone because this does have a lot of this goes as Darwin, but they get to refine them. And I think it's probably the perfect example of the, the value of extra curricular activities beyond the classroom. On a college campus. It goes a phase when they're successful on this and had a leadership role. I think any future employer would be really impressed with that because they can illustrate these skills, enable to pull it off and be able to do so. He knows a lot of people very, very thankful for what she did because she hadn't had driven driven down here that day. I mean, who knows? Sometimes the circumstance, but it takes someone with vision and passion like you, I guess, good thing. Because it was the amazing people that came together. Any administration was to share the genie was around 40, the doctor climate and Riley, I mean, it was a group of people. Group of people, but they're all need, always need a catalyst. So this, look back again a little bit about Ryan. Probably have thought of this and the sum, but maybe you have a chance here to articulate it. How the dry and change your life for her, diddy. Yeah, Ryan had great impact on me. I you know, I always go back and say when you're 17 or 18 years old, you're very self-centered. Here world revolves around very superficial nations. And I always say my, my biggest decision that day was what genes do I where the joint density. Luigi, sure. And so having someone come in, meeting someone dying from a horrible disease and decided to spend that time in his life. He was very aware that he was very at peace with that. He wanted to live, but he had a great acceptance that he may not. And therefore, he was going to spend his life to help other people. I don't think most kinds could do what he particularly maybe as a teenager, you and me don't lie to me as a human being and I I still try on days when I wake up or you want to complain about me? I still try to think about right away and putting up. Okay. I think that life's bigger than the addition that you should wake up every morning and be grateful to be alive course and try to do good things for other people. So I think he had a profound impact. And in many other people in publishing someone like that whole course. And then of course, I took Ryan, I went with some of his doctor's appointment and meeting Dr. crime and really inspired me to be a physician. Wow, now suspect cross this impact us bloodflow. And a lot of different ways to select you, say add new data to remind oneself one another now and to know Jeannie too, I feel how she was a mother, probably quite a role model for others. Sure. And again, to have for it, I have to go through what she has to go to. What do you think was Ryan's most important message? I think is most important messages treat each other with kindness. That we're all human beings and there's no room for prejudice, no any level. Sure. It doesn't matter what we're talking about. How would you like for people to remember horizon? Well, I think to remember him for hope and his strength for Halley, how one child's change that May 7th, entire disease. Yeah, the right one. So carry that message on the person who did what was right for any people. So now it's been 20 years ago since his death, that may seem possible. It went this way. So here I'm sure. But what does that mean to you that that 20 years. What are your feelings associated about that? I mean, I guess you just expressed it, but yeah, everything to add to that or I like it that I feel sad that we lost Ryan and many other aids patients. I mean, it's a huge victory now that we can keep aids patients alive. Sure, it's a horrible disease. They still suffer. The chronic disease. Yeah. Well, you have a diagnosis of aids, HIV. It's not a death sentence. I think that Ryan would be happy for her. And I wouldn't have thought snide. A lot of people talk the other way that we have a cure when our vaccine, yeah, there's not many diseases that you can come this far that quickly. Okay. I mean, look at MS or cancer. We sure. We the battling a lot of diseases for a 100 years. And in 20 years we can keep people alive. Yeah, Finished great achievement. It really is the, the scientists, the CDC that research really the antiretroviral drugs and there's new ones coming out every day. Washington quite an accomplishment. I'm sure he would have been pleased effective medicine was able to do some of this stuff. And I didn't help that the world continues to listen to your message, not discriminate. And to educate as we learned today, of course, say, for the ways we know how to prevent, think it's a really great point. I think many people maybe can continue his message and in their own different way. The principles and the ideas of a head that the value of awareness, value of knowledge, but also the value in humane aspect of being compassionate with individuals. Well, thank you for sharing your ideas and thank you for what you did for starting a dance marathon. I mean, certainly that is one of the most significant things on campus. It's really helping the hospital, but also helping continue the legacy of Ryan and certainly a worthy cause. And gosh, this thanks for bringing his friend and being there at that moment. And I think a lot of people appreciate that too. So thanks to you. Well, thank recognizing Ryan. I think it's wonderful.