Description of the video:
The camera shows Myron, an elderly man, talking directly to an interviewer (off-camera).
Myron Gill - Indiana
Myron: “In 1999, we were out in California with a sales meeting with Shell Oil Company. We got through our meetings early. And so I told my wife, I think I’ll go out and run, which was four miles around the complex. My back started hurting and I didn’t think too much about it the first day. The second day we got out early and I did the same thing. That’s when my back really started hurting. And when we got home, we went to the doctor and they run…they run a lot of tests on me. They couldn’t find out what was wrong with me. Eventually they took a 24 hour urine specimen and found out that I was diagnosed with myeloma at that point.”
The camera cuts to a different interior, the inside of an office. Another man, Rafat, is talking directly to an interviewer (again, off-camera).
Rafat Abonour, MD – IU Precision Health Multiple Myeloma Research Team Leader
Rafat: “It’s not melanoma, it’s myeloma. It’s a blood cancer. It’s about 2 percent of all cancer. These cells that make antibodies to fight infection, they multiple in the bone marrow and they cause the patient to have bone destruction, anemia, high calcium, or kidney failure. Unfortunately, 70 percent of patients with multiple myeloma, they do have bone disease. So what happens is that when patients, you know, their bone becomes fragile. Like their spine, it’s like marshmallow. So really, it’s the bone destruction that can be symptomatic and really life changing.”
The camera cuts back to Myron in his house looking at some of the meaningful photos and keepsakes from his past.
Myron: “Back in 1999, I was diagnosed with multiple myeloma. The oncologist I had at the time said I had on average about two to two and a half years. That was the average that most people living with it or those conditions. I’m going on over 20 years now that I have been going through this. I think in the near future with all the technology and the smartest people we have working on it, I think we’ll come up with a way to cure it. And I don’t think it’ll be very long before they do that. I certainly hope it isn’t, because I don’t want to see people suffer like I had to for a while.”
Camera cuts back to Rafat, again talking directly to an off-camera interviewer.
Rafat: “Myron’s journey is, you know, it’s been wonderful but hard. He’s lived long enough to see grandkids accomplish things, and I think that’s a blessing. And the truth in my mind is, that if we’re going to make a difference, we need to get it right the first time around. To prevent multiple myeloma, I think, we are one of many teams working to find the prevention. And I think, you know hopefully, in 3 to 5 years we’ll find a way to prevent myeloma. I think the more exciting thing is can we cure multiple myeloma today? And many of us in the field believe that we have the tools to try and cure a good percentage of patients in the next couple of years. So our goal is to use Precision Health Initiative to try and come up with the right combination for the patients so they get a lasting remission and they live a long life.”
Description of the video:
The camera shows Faith, talking directly to an off-camera interviewer.
Faith Kuntz - Indiana
Faith: “We had talked about having kids and I was no longer on birth control, but the timing of when it would happen was supposed to be a lot later. It happened like that.” Faith snaps her fingers for effect. “Then the weight gain started to happen and so I knew that I was to gain some weight, but after a while, 20 or 30 pounds, my doctor than suggested I should take an early test for gestational diabetes. At that point I realized the concerns were more so how can I make sure I watch what I eat better…because I did not have that concern going in. So I’m glad that my doctor took the time to test early, and didn’t ignore the weight gain that was happening.”
The camera cuts to David, wearing an IU School of Medicine jacket, talking directly to an off-camera interviewer.
David M. Hass, MD
David: “So gestational diabetes complicates about 1 in every 12 pregnancies in the United States. As the placenta gets larger, it produces a substance that interferes with mom’s ability to really process the sugar and glucose and get them into the cells to use it. So mom’s blood sugar goes up. The problems that arise from that then is that if mom’s blood sugar is up, it then sends it to the baby, into the placenta. And that can cause several different issues to arise during the pregnancy. Some of the complications that can arise with moms is they have higher risks of pre-eclampsia, having to have a Cesarean delivery and other things that add difficulties to birth. Now long term for moms is really where the problems can arise. Women who develop gestational diabetes have about a 70% lifetime risk of developed Type 2 Diabetes. And that is really a very high risk. It’s actually the number one risk factor for developing Type 2 Diabetes. Babies can end up growing larger, they have a little bit of a higher risk of birth trauma, having problems with jaundice, and having some difficulty regulating their blood sugar after birth. Babies also, that are born to women with gestational diabetes, have longer term consequences and they have higher rates of issues with diabetes and glucose control later in life and childhood obesity, as well.”
The camera cuts back to Faith, talking directly to the off-camera interviewer.
Faith: “So the emotions when I found out I had gestational diabetes…emotional breakdown is a good phrase.” Faith quickly laughs. “I really felt like I had done something wrong, that there was something that I should have watched out for, but my doctor reassured me that it was truly something that was out of my control and I was genetically predisposed to it and it was something I could just move forward and handling appropriately. And even with that conversation, the most important thing has been meeting with my doctor continuously throughout the pregnancy as life is happening, and I’m preparing for this baby to make sure I stay on track.”
The camera cuts back to David, talking directly to the off-camera interviewer.
David: “So the IU Grand Challenge Precision Health Initiative Diabetes project is really aimed at two activities. One is the prediction and prevention of gestational diabetes. So we’re utilizing large cohorts and we’re recruiting a new cohort of women to really understand how does the demographic characteristics of a woman, how do stress, anxiety, depression, how do your physical activity and your diet really impact those risks? And how does your genotype, how does the DNA blueprint of your body, help us understand and potentially prevent some of these things from happening. So that we can tell a women early in her pregnancy, this is your risk of gestational diabetes, let’s figure out a way to prevent that from happening. And then in the later phase, if they did develop gestational diabetes…it’s really giving them options that we can help them address in multiple ways. How can you prevent Type 2 Diabetes? By using the diabetes prevention program and making it a structure that works within your family. We want to make sure that people are informed, so that they feel empowered to take charge of their own health.”
Description of the video:
The camera show Angie, talking directly to an off-camera interviewer.
Angie Steeno - Indiana University
Angie: ”Cancer first entered into my life when I was 29. So my husband and I had been married for quite a few years, and we were ready to start a family. We thought we were pregnant. We then immediately were told that we were having a miscarriage, and then within the next day I learned that this wasn’t it…it was cancer. I immediately started chemotherapy. However, after the 6 month period, I was cancer free. Then in year 10, I was at my oncology appointment, and while I was there I told the doctor that over the weekend that I had felt a lump. I told him I don’t think it’s anything because it was up high. It’s nothing that even concerned me, or even had in my head that something was wrong. The doctor said, hey you’re here, I’ll go ahead and see if I can feel anything. He felt it too. So within the next week I went and had a mammogram. And then the doc that was there that day came in and told me that just by looking immediately of what he could see, it was cancer. So when I received the diagnosis of breast cancer, I was in shock. This was a total, unrelated cancer. I had been through this before. I was angry that I had to deal with it again. And then I learned that breast cancer isn’t a one-size-fits-all. And that was an eye-opener for me. I was diagnosed with triple negative, which is a more aggressive form of the disease. And it effects a lot fewer of us. So there aren’t as many treatments that are geared for that type of cancer. So my initial research, when I was doing my own research, wasn’t very positive. And it was pretty hard to swallow.”
Camera cuts to a white title card with a red font that states: On July 31, 2018, Indiana University School of Medicine announced publicly that it is focusing on improving treatment and eventually curing triple negative breast cancer through the IU Precision Health Grand Challenge.
The camera cuts to Anantha, talking directly to an off-camera interviewer.
Anantha Shekhar, MD, PhD – Leader, Grand Challenge Precision Health Initiative
Anantha: “So triple negative breast cancer is really a collective term for breast cancers that don’t have an estrogen or hormone receptor on them. But what that really includes is cancer mutations of multiple kinds. Some people have estimated that as many as 400 different mutations can lead to what we call triple negative breast cancer.”
The camera cuts back to Angie, talking directly to the off-camera interviewer.
Angie: “So I was just looking on the internet, looking at the morning newspapers, and I saw an article that was talking about the Precision Health Initiative. And specifically, that there was a focus on triple negative. So I immediately reached out to the IU doc that name I saw in the newspaper and I said thank you. Thanks for sharing your intellect, and your time, and for going after funding. It was amazing. That night, I had an email from him, saying thank you for reaching out, I’m going to get you in touch with more of my team.”
The camera cuts back again to Anantha, talking directly to the off-camera interviewer.
Anantha: “Having people like Angie reach out to us, and putting a face to these diseases is extremely important because that’s what humanizes everything we do. They provide us the motivation to defeat these diseases.”
Angie: “The Initiative is important. I want to be a mom to my boys. I want to watch my boys grow up.” Angie breaks her speech up with sniffles, momentarily pausing to gather her thoughts, though it’s clear she’s very emotional talking about this. While she pauses, we see flashes of her and her husband and her two boys, playing Uno, a card game on the floor of their living room. “I want others to have the opportunity to do that as well. To see that this is happening, to know that there is hope and that things are continuing to progress. That is gives folks who have a pretty scary diagnosis a good chance, and a positive chance. I think it’s going to help people, empower them to want to fight harder and stronger. It allows me to be there for my family, and that’s most important to me.”
The camera cuts to a photograph of Angie sitting with her family in front of their fireplace, decorated for the winter holidays.
Description of the video:
The camera shows Jamie, talking directly an off-camera interviewer.
Title: Jamie Renbarger, MD – IU Precision Health Childhood Sarcoma Research Team Leader
Jamie: “We saw Tyler at the time of his initial relapse of his osteosarcoma in May of 2017. We saw him as part of the Precision Genomics program and through that clinical consult, we did clinical sequencing as well as research-based sequencing of his tumor as well as his own DNA from his blood to try and understand what was driving his tumor to grow at that time. That facilitated our selecting four medications, traditional cytotoxic chemotherapy fully in combination with novel small molecule targeted inhibitors, that we felt together in combination would be safe and potentially effective at either stopping or slowing down on tumor growth.”
The camera cuts to Tyler, lying back in a assistive bed, talking directly to an off-camera interviewer.
Title: Tyler Trent – Research Advocate and Osteosarcoma Patient at Riley Hospital
Tyler: “Yeah, I know. I tell people that without the research that’s been done, I wouldn’t be able to speak to you. Because of the genomic testing that was done on the tumor, you know those drugs that were found basically prolonged my life.”
The camera cuts back to Jamie, again talking to an off-camera interviewer.
Jamie: “So one of the challenges that we face in pediatrics is that the number of tumor models particularly from relapsed solid tumors are very few…few and far between. And in order for us to have laboratory models to study, not just up front cancer, but specifically the bad actors that come back, we have to have models in the lab to be able to study those. And so again, one of the really amazing things and very unique things about the samples and models that we were able to collect and develop from Tyler is that we not only have a sample from the time of his relapse prior to relapse chemotherapy on, but also from after he got chemotherapy so we can understand the tumor adaptive response…how it changes after exposure to chemotherapy, and also have both of those models to study in the laboratory.”
The camera again cuts back to Tyler.
Tyler: “As people continue at IU that will prolong other kids’ lives as well. And that hopefully, that because of that, those kids will, basically because of the research, that they would be able to prolong other kids’ lives and that will become a snowball effect. And that we would be able to prolong hundreds of thousands of kids’ lives.”
The camera cuts to a white title card with a red font that states: Tyler passed away on January 1st, 2019. His legacy will continue through the research he made possible.
Description of the video:
The camera shows a table with a bunch of photos of one woman throughout her life, displaying different experiences and memories. We hear Liana’s voice before cutting to her talking to an off-camera interviewer.
Title: Liana G. Apostolova, MD – Professor of Alzheimer’s Disease Research
“Alzheimer’s disease just like any other complex disorder is extremely difficult to characterize, diagnose, or treat…so we think of a single disease entity, but when we look at the individual patients, they’re all different. And that’s exactly what we would like to do – be able to genotype patients to understand which exact disease mechanisms are active in their particular case and then tailor the therapy to that individual patient.”
The camera cuts to Mary, talking to an off-camera interviewer.
Mary: “To not be afraid, to live my life, to be active, to continue to read and study, and I love doing puzzles anyways, so that’s a good thing, and just keep going. Just keep living.”
The camera cuts to a black title card with white text, stating: 62-year old Mary Estrada was recently diagnosed with early onset Alzheimer’s disease.
Mary: “I originally went to my primary care doctor for two years in a row and I realize I’m really having trouble remembering things and my memory’s slipping. Both times she didn’t do anything about it, but the third year, I decided to meet with someone else. And I met with Dr. Apostolova – we did several tests and then she said, ‘well would you mind if we did a spinal tap?’ I agreed and we did it and she could tell immediately right there, the gene was there. Of course I’m concerned, but I’m also…I feel good that there’s so much being done these days, and that there’s so many people working on it and that gives me reasons for hope, gives me reason to be proud with society and what their modern medicine is doing, and to know that I have a chance to be a part of that…this is pretty exciting to me.”
Liana: “The Precision Health Initiative at IU is a really fantastic, large scale research program that is going to develop multiple precision health approaches for disorders such as multiple myeloma, such as breast cancer, and now, for my great excitement, also Alzheimer’s disease. We’re all in this together, in our adventure to cure these disorders but with more research investment, and with bringing in initiatives like the Precision Health Initiative, we’ll be much closer to being able to solve the puzzle of chronic complex disorders and finding their cure.”