 I'm Paul Anderson from Champaign, Illinois. My wife, Juan Pinn, is here. Stand up, honey. I would like to thank Duke University School of Medicine Center for Applied Genomics and Precision Medicine, and Dr. Terry Minolio from the NHGRI for giving me the privilege to speak to you today. I'm humbled to be in the same company with some of the greatest minds in the world regarding pharmacogenomics. I hope I said that right. If someone would have asked me 16 months ago to get up and speak in front of a bunch of doctors, PhDs, and scientists, I would have said, no way. I would have been way too intimidated. But that was before toxic epidermal necrolysis took the life of my beautiful 22-year-old daughter, Angela. Now I have no fear. I've experienced the worst thing that can happen to a father. What could be worse? So here I am, a simple retired postal worker, here to tell you about the life and death of Angela, and my search to find someone to do something about it. Tom Penn and I had been infertile for 14 years before our son Tim was born. Two years later, Angela was born on St. Patrick's Day, 1993. Both of our children were conceived using the gift procedure. Angela was a very shy little girl when she began preschool at the age of three. And somewhere along the line, she lost her shyness. She was very popular. People knew her wherever she went. Where she worked, her co-workers said it was always more fun to work when she was there. She was always on the cutting edge of style and social media. She was tweeting before anyone knew what Twitter was. She was unique, not a follower. She said she was cool. And she made other people feel cool when she was around them. She had a way of making people feel comfortable around her. People that felt like they didn't fit in, felt like they did fit in when they were around her. They said that she would light up a room when she came into it. And she was the life of the party. The party didn't start until she got there. And when she left, the party was over. And by the way, she loves SpongeBob. December 24th, 2015. On the afternoon of Christmas Eve, 2015, Angela texted her mother showing a picture of her eye infection. She was complaining of pain. She thought she had pink eye. One pen told her to go to convenient care. She went and saw a doctor at 4 o'clock. The doctor gave her some erythmiasin ointment for her eye and tested her for strep. The strep test came back negative. The doctor told her she had a viral infection to take something for her fever and to get some rest. She went back to her apartment, took some ibuprofen, and went to bed. I called her later, asking if she wanted to go to Christmas Eve Mass with us. She said she didn't feel up to it. At 9 p.m., she called me and asked if she could spend the night with us because she felt so bad. I picked her up at her apartment and brought her home. Her eyes were swollen. Her throat hurt. Her temperature was 103.7. I gave her some Tylenol, and she went to bed. 2 a.m., December 25th, Christmas morning. Angela woke me up saying, Dad, you have to see this. I went into the bathroom where she was, and she showed me the inside of her mouth. Her cheeks and throat were black and blistered. I gave her some warm saltwater to gargle, and she went back to bed. Then I got on the internet to try to find what it was I had just seen in her mouth. I found nothing similar. Christmas morning. Her condition had worsened, so we headed to Karl Hospital's emergency room. It wasn't long after we arrived that she was in a room, and a doctor was examining her. Soon there were five doctors examining her and conferring with each other, trying to figure out what was happening to her and what the next step should be. It was like an episode of the TV series House. One doctor told me that she had the symptoms of Stevens-Johnson syndrome. He said that they may have to send her to the burn unit at Barnes Hospital in St. Louis. However, someone decided that she should stay at Karl's ICU, and they began treating her for measles and mumps. Angela arrived at ICU sometime before noon. By this time, the outer skin of her lips had dried up and peeled off. Her eyes were badly swollen, almost shut. Her face and neck were swollen. Her chest hurt. Her throat hurt. Her throat hurt so bad that swallowing was intolerable. They began giving her morphine for pain. The morphine took the pain away from her chest and her eyes, but not from her throat. They were afraid to give her too much because it might affect her breathing. Meanwhile, back home, one pin was preparing Christmas dinner for 17 guests, including her mother. One pin picked up her 95-year-old mother at the nursing home that morning. We thought that this was probably going to be her last Christmas with her family, which it was. She died almost a year later on December 14, 2016. Had we known the seriousness of Angela's condition at this time, we would have canceled Christmas dinner, and one pin would have spent the day at the hospital with Angela and me. That afternoon, Angela was in a lot of pain, but when visitors came by, her cousins and then her brother and his girlfriend, it seemed to cheer her up. Later, one pin stopped by. Before she left, she told Angela that she loved her, and Angela said, I know, I love you too. That was the last word she ever spoke to her mother. She still seemed in good spirits at that time, even though she was in a lot of pain. After that, she was hurting more than ever. She was screaming whenever she had to swallow. The doctor eventually gave her more pain medication, and it seemed to help a little. By this time, skin was peeling off the backs of her ears, the palms of her hands. I spent the night with her that night. December 26th, 5 a.m. The doctor woke me up. He said that what I saw happening to her outer skin was happening on the inside of her body. She's burning from the inside out. He said that they would have to sedate her and put her on a ventilator and drain the fluid out of her lungs because they were full, and she wouldn't be able to breathe without a respirator. This is when I first realized that we could lose her, and I completely broke down. When I got my composure, I went to see her before they sedated her. Skin was peeling off of her face now. I told her that I loved her, and she said, I know, I love you too. That was the last word she ever spoke. Right after this time, she was texting her friends, posting status updates on Facebook, tweeting her friends on Twitter, and sending selfie pics trying to get her friends to come and visit her. Her conditions seemed to level off a little after that, but they still did not know what was causing this. They were not sure if it was viral or bacterial. They still thought it might be mumps or measles, so they put her in an airborne isolation room and they gave her some different antibiotics, hoping that one of them would work. That evening, the doctor told us her kidneys were failing. She would have to be put on a continuous dialysis machine to filter the blood for her kidneys. Her other organs were weakening, but her heart was still strong. Now, they thought it would be a good idea to send her to Barnes Hospital in St. Louis, but there was a problem. There were severe thunderstorms and tornado warnings, and the helicopters would not fly. Also, they thought a three-hour trip by ambulance was too long and too risky that she might not survive the trip. Sunday, December 27th, they had ruled out it was an airborne disease and took her out of isolation. They narrowed down the antibiotics to treat it as a bacterial infection and gave her IVIG to help her own immune system try to fight it. Sometime that day, her kidneys failed, and she was getting more and more fragile. In the late afternoon, two doctors came to us suggesting that we put her on an ECMO machine. They had tried to drain her lungs again, but the fluid had gravitated so far down into her lungs that it was impossible to drain enough fluid to help. They said that her blood was not getting enough oxygen to sustain her organs and that the ECMO machine would give her 100% oxygenized blood. They told us that the surgery for an ECMO was extremely risky and that in her fragile state she may not even survive the trip to and from the operating room. Our choice was to do nothing with little chance of survival or attempt this risky surgery to give her and the doctors more time to fight this infection. The surgery was a success. We were encouraged by this thinking that if she could survive this, she could survive anything. December 28th, things got worse. The doctors were more or less back to square one in fighting this mysterious disease. Now they weren't sure once again if it was bacterial or viral. Part of their daily procedure was to check her eyes every four hours to see if they responded to light. At 4 AM, they did. At 8 AM, they did not. They contacted Barnes Hospital again. The doctors at Barnes said that they could have a bed for her. The weather was still not good, but they would send one of their own fixed wing aircraft to pick her up. It was extremely risky to transport her. But by this time, it was the last option. But first, they wanted our doctors to do a CT scan on her brain. They said if blood was in her brain, there was no hope. If there was not blood in her brain, they would fly her to St. Louis. The CAT scan pictures showed that she had multiple pockets of blood throughout her brain, and she was brain dead. We were left with the decision of leaving her on life support or turning it off. One pin and I went in and held her hand, hugged her, and said our goodbyes. We asked the doctors to turn off life support, and we waited until her heart stopped at 6 o'clock 1 PM, December 28. After multiple diagnosis throughout these four days, the doctors now believe that Angela succumbed to toxic epidermal necrolizes. They think that it might have been triggered by ibuprofen. I might add that Angela had been taking ibuprofen since she was a baby. Around 500 people came to her visitation. It lasted nearly five hours. At her visitation at funeral, we requested donations for research instead of flowers. We received nearly $10,000 at that time. Two months later, my son, Tim, organized a benefit concert and we received another $5,000. Then I began my search for a place to send the money. I went online and found the SJS Foundation and called their number and spoke to Jean McAuley, the founder and mother of Julie, who had survived SJS twice. I asked her about research for SJS. She said that there was no research being done in the United States. She said that the foundation's purpose was to be an advocate and to spread public awareness. She suggested that we send our money to one of the burn centers that treats SJS patients, such as the Shriners Hospital in Boston. She said that the foundation didn't need that much money, but we made a small donation to them anyway. I was disheartened that no research was being done on the disease that took my daughter. I went back online and found that an international SJS workshop had been held in March of 2015 in Washington, DC. At the website, telling of this event was a list of the 68 participants that were there. I copied the names of the 68 people, googled their names for their email addresses and phone numbers, and began contacting as many of them as possible. I first heard from Dr. Terry Manolio. She suggested that I contact doctors in Southeast Asia where some promising research was being done. We considered sending our donations overseas, but decided to continue researching for research in the United States. Finally, after four months of searching, my first hint of research in the United States came in an email from Dr. Elizabeth Phillips at Vanderbilt University Medical Center. She said, we are actively gathering researchers within the United States and internationally to develop a research network. This is happening currently as we have been surveying across the United States to get a coordinated effort over the last two weeks. There are potentially new drugs of interest that can be trialed in the treatment of SJS TEN, and this type of infrastructure will be absolutely necessary to study and affect change in a disease as devastating as SJS TEN. In subsequent emails from Dr. Phillips, I received a preliminary proposal for her intentions for SJS research. She also invited us to visit her at VUMC. Last May, we went to Nashville to meet her and her team of doctors. By this time, we had accumulated $16,000 in donations. It was an amount that we thought insignificant in the world of research where millions of dollars are spent, but they were impressed and encouraged by our endeavors and said, it's a start. After that, our son Tim opened up a GoFundMe account on Facebook, and so did I. Last December, nearly one year after Angela's tragic death, we met with Dr. Phillips again and presented her with a check for $22,000. This was an accumulation of all the donations we have received from family, friends, and concerned strangers. $22,000 was also a significant number because it represented $1,000 for each year of Angela's shortened life. As of today, the Angela Anderson Memorial SJS 10 research fund at Vanderbilt has received over $28,000 in donations. In closing, I would like to add a positive note. There have been a lot of local publicity since Angela's death. Our son was interviewed once on TV and myself twice. And last December, there was a news article in our local paper about Angela's life and death and our request for finding researchers. Shortly after that article was printed, the reporter that wrote the article received the following email. My name is Kerry Victor. On December 20, 2016, I was diagnosed with toxic epidermal necrolysis. Fortunately, I lived to tell. Through this experience, I became aware of the tragic story of Angela Anderson. A Google research led me to your article. And as I read the story with a heavy heart, it was all too familiar. I suspect that Angela's case raised the awareness necessary among the local medical community for me to get a quick and accurate diagnosis. I was immediately transferred to Springfield Memorial for 10 days of treatment in their ICU burn unit. I believe that it is because of Angela that I am alive today. It is important to me that the Anderson family know that I think their daughter may have saved my life. I want them to know that I joined them in their fight to raise awareness. And I hope through our efforts research will come about. I am working hard to raise awareness among the medical community as well. Why do so few know what this condition is? Why is it so commonly misdiagnosed? These are questions that need to be answered. Why is it not required by physicians to report SJSTEN to the FDA? I want the Andersons to know that I too ask these questions. And as I continue to recover, I'm doing my best to spread the word in hopes that no one else shares in our experience. Sincerely, Kerry Victor. It is my hope that Angela's story inspires you all to go back to your labs and work harder. I know that research can be a tedious task. Today, you will see and hear a lot of data, charts, graphs, statistics, and numbers. I just want you to remember that these statistics are real people with real faces and names and families that love them, just like you love your own families. Thank you. Thank you very much, Mr. Anderson. Mrs. Anderson, we really appreciate your sharing your story with us. And I think it will guide us throughout the next two days and hopefully beyond that. Thank you. Our next speaker is Dr. Dan Rodin from Vanderbilt University, who will be talking about exploiting pharmacogenomic discovery to improve patient care and why we're not quite there yet. Dan.