1 00:00:01,080 --> 00:00:09,920 Speaker 1: Previously unsymptomatic. David Fegenbaum, a college quarterback deeply impacted by 2 00:00:09,920 --> 00:00:13,200 Speaker 1: his mother's fight with brain cancer, was a prime example 3 00:00:13,240 --> 00:00:14,800 Speaker 1: of peak health and motivation. 4 00:00:15,520 --> 00:00:18,680 Speaker 2: The moment that I saw her dealing with her cancer, 5 00:00:19,040 --> 00:00:22,560 Speaker 2: I just said, this is what I have to spend 6 00:00:22,600 --> 00:00:24,880 Speaker 2: the rest of my life doing. And by this, it's 7 00:00:24,960 --> 00:00:28,160 Speaker 2: taking care of people with horrible diseases, and it's searching 8 00:00:28,200 --> 00:00:30,920 Speaker 2: for treatments so that people don't suffer. 9 00:00:31,640 --> 00:00:35,720 Speaker 1: But during med school, everything quickly came crashing down when 10 00:00:35,800 --> 00:00:39,320 Speaker 1: Castleman disease took him from treating patients to the brink 11 00:00:39,360 --> 00:00:41,320 Speaker 1: of death in a matter of days. 12 00:00:41,720 --> 00:00:45,519 Speaker 2: I was so sick that my doctors encouraged my family 13 00:00:45,520 --> 00:00:46,400 Speaker 2: to say goodbye to me. 14 00:00:47,000 --> 00:00:50,640 Speaker 3: I'll never forget the moment when a priest came in 15 00:00:50,720 --> 00:00:53,479 Speaker 3: and read him his last rites. In this moment of sorrow, 16 00:00:53,560 --> 00:00:56,280 Speaker 3: I remember I couldn't really keep it together, I couldn't 17 00:00:56,320 --> 00:01:00,440 Speaker 3: hide help. Horrifying it was to see him in that state. 18 00:01:01,880 --> 00:01:06,280 Speaker 1: After exhausting all the treatments available for Castleman, David's body 19 00:01:06,400 --> 00:01:09,520 Speaker 1: was ravaged by chemo and he was out of viable options. 20 00:01:10,000 --> 00:01:12,840 Speaker 1: That's when he decided to take matters into his own hands. 21 00:01:14,080 --> 00:01:15,959 Speaker 2: I had to take some action, and it had to 22 00:01:16,000 --> 00:01:18,440 Speaker 2: be a pretty crazy step, and that is to start 23 00:01:18,480 --> 00:01:20,840 Speaker 2: testing one of these drugs that I was studying in 24 00:01:20,880 --> 00:01:23,320 Speaker 2: the lab on myself. All the drugs I was studying 25 00:01:23,360 --> 00:01:26,240 Speaker 2: the lab were all ft approved for something else, they 26 00:01:26,280 --> 00:01:27,640 Speaker 2: just weren't used for Castlemen. 27 00:01:28,440 --> 00:01:32,880 Speaker 1: After repurposing a medicine originally designed for kidney transplant patients 28 00:01:33,120 --> 00:01:36,600 Speaker 1: to send his disease into long term remission, David was 29 00:01:36,680 --> 00:01:40,440 Speaker 1: determined to prevent others from that similar dead end. His 30 00:01:40,600 --> 00:01:44,680 Speaker 1: theories around expanding the approved uses for certain medicines would 31 00:01:44,720 --> 00:01:48,080 Speaker 1: quickly be put to the test. Seeing Gary Gravina fight 32 00:01:48,200 --> 00:01:51,880 Speaker 1: for his life against Castleman, just like David had a 33 00:01:51,920 --> 00:01:53,200 Speaker 1: few short years before. 34 00:01:54,760 --> 00:01:57,880 Speaker 2: Yes, his heart is technically beating. Yes he's technically breathing 35 00:01:58,160 --> 00:02:00,800 Speaker 2: because of what we're doing medically, but he's not going 36 00:02:00,840 --> 00:02:03,840 Speaker 2: to come back from this. And I just remember being 37 00:02:03,960 --> 00:02:07,320 Speaker 2: so devastated to hear that, and then at the same 38 00:02:07,360 --> 00:02:10,440 Speaker 2: time remember still running down the hall to the lab 39 00:02:10,800 --> 00:02:15,160 Speaker 2: and still running the experiments because like who knows, there was. 40 00:02:15,120 --> 00:02:18,480 Speaker 4: At least one night in both of my flares where 41 00:02:18,600 --> 00:02:21,560 Speaker 4: it was just that close. I was in a coma. 42 00:02:22,200 --> 00:02:24,680 Speaker 4: You know, everything in me was tanking, and I can 43 00:02:24,760 --> 00:02:27,320 Speaker 4: just remember crying tears of frustration. 44 00:02:33,400 --> 00:02:37,000 Speaker 1: How terrifying would it be to fight an unknown enemy, 45 00:02:37,520 --> 00:02:41,360 Speaker 1: one you didn't recognize and didn't see coming. What if 46 00:02:41,400 --> 00:02:45,440 Speaker 1: that enemy was coming from within a disease that even 47 00:02:45,600 --> 00:02:51,239 Speaker 1: doctors couldn't identify. Nearly half of all Americans suffer from 48 00:02:51,320 --> 00:02:56,000 Speaker 1: some chronic illness, and many struggle for an accurate diagnosis. 49 00:02:57,080 --> 00:03:04,920 Speaker 1: These are their stories, Lauren Bribe Pacheco, and this is symptomatic. 50 00:03:18,120 --> 00:03:21,799 Speaker 1: Gary Gravina built a life working with his hands, first 51 00:03:21,800 --> 00:03:24,239 Speaker 1: as a marine and then as a carpenter for over 52 00:03:24,280 --> 00:03:28,280 Speaker 1: twenty seven years. He felt fulfilled when he could craft something, 53 00:03:28,639 --> 00:03:30,560 Speaker 1: even if it was just a song on his guitar. 54 00:03:31,320 --> 00:03:33,760 Speaker 1: Before Gary would face a fight for his life, he 55 00:03:33,840 --> 00:03:36,840 Speaker 1: and his wife Stacy had been hit with their first 56 00:03:36,960 --> 00:03:39,120 Speaker 1: seemingly insurmountable hurdle. 57 00:03:39,760 --> 00:03:45,040 Speaker 4: Let's see about nine months after we all moved in together, 58 00:03:45,480 --> 00:03:48,960 Speaker 4: my steps on Jacob presented with a seizure and had 59 00:03:49,080 --> 00:03:51,720 Speaker 4: a diagnostic journey that the end result was that he 60 00:03:51,760 --> 00:03:55,680 Speaker 4: had brain cancer, and so we were heavily engaged in 61 00:03:55,800 --> 00:04:00,240 Speaker 4: fighting that for just over a year. They had given 62 00:04:00,320 --> 00:04:03,680 Speaker 4: him six months to maybe a year to live as 63 00:04:03,680 --> 00:04:08,200 Speaker 4: the original prognosis, which being Jake. He beat that by 64 00:04:08,240 --> 00:04:08,640 Speaker 4: a week. 65 00:04:09,280 --> 00:04:09,600 Speaker 1: Wow. 66 00:04:10,360 --> 00:04:12,960 Speaker 4: It was huge. It was traumatic, and there was all 67 00:04:13,000 --> 00:04:17,240 Speaker 4: this medical acquaintance that we wish we never had. And 68 00:04:17,720 --> 00:04:20,280 Speaker 4: when the doctor said there was nothing more they could do, 69 00:04:20,360 --> 00:04:24,680 Speaker 4: we were preparing hospice and we had the hospital bed 70 00:04:24,760 --> 00:04:25,479 Speaker 4: being sent here. 71 00:04:26,040 --> 00:04:28,440 Speaker 1: Oh Gary, I'm so sorry. 72 00:04:28,680 --> 00:04:29,640 Speaker 4: Yeah, thank you. 73 00:04:30,279 --> 00:04:33,599 Speaker 1: So you had already been through the ringer before you 74 00:04:33,720 --> 00:04:35,400 Speaker 1: even realized you had symptoms. 75 00:04:35,600 --> 00:04:37,839 Speaker 4: Yeah, something like that happened, and you think, wow, that 76 00:04:37,920 --> 00:04:40,240 Speaker 4: was the most awful thing, and you kind of in 77 00:04:40,279 --> 00:04:42,640 Speaker 4: the back of your head, you're thinking, that must have 78 00:04:42,720 --> 00:04:45,080 Speaker 4: been our big, awful thing that we have to overcome. 79 00:04:45,800 --> 00:04:48,520 Speaker 1: But it was not long until Gary started noticing his 80 00:04:48,520 --> 00:04:52,280 Speaker 1: body change. Heavy fatigue made getting through the day more 81 00:04:52,320 --> 00:04:58,400 Speaker 1: of a chore than usual. Looking back, now, what are 82 00:04:58,480 --> 00:05:00,720 Speaker 1: some of the earliest symptoms. 83 00:05:00,760 --> 00:05:04,240 Speaker 4: You can pinpoint the morning when I felt ill, like 84 00:05:04,480 --> 00:05:06,240 Speaker 4: I felt like I had a flu, but I could 85 00:05:06,320 --> 00:05:08,279 Speaker 4: not push through it. I could not get up and 86 00:05:08,320 --> 00:05:11,640 Speaker 4: go to work. And I mean for the previous eighteen years, 87 00:05:11,680 --> 00:05:13,800 Speaker 4: I think I had taken off two and a half 88 00:05:13,920 --> 00:05:17,920 Speaker 4: days of sick time. I just did not miss work 89 00:05:17,960 --> 00:05:21,240 Speaker 4: if I felt sick during the day, I pushed through 90 00:05:21,279 --> 00:05:23,200 Speaker 4: the end of the day. I got some rest that night, 91 00:05:23,279 --> 00:05:25,480 Speaker 4: and then the next morning I came in and started 92 00:05:25,520 --> 00:05:28,719 Speaker 4: to feel better. But this wasn't happening. And I took 93 00:05:28,760 --> 00:05:30,640 Speaker 4: one day off and I did not feel any better, 94 00:05:31,600 --> 00:05:33,440 Speaker 4: and so I say, it felt like a flu, that 95 00:05:33,480 --> 00:05:39,039 Speaker 4: achy feeling, that drained feeling, and the swimminess in my head. 96 00:05:40,160 --> 00:05:43,960 Speaker 4: My wife started to notice that my stomach was getting larger, 97 00:05:44,160 --> 00:05:46,520 Speaker 4: and I wasn't really eating because I felt so ill, 98 00:05:47,240 --> 00:05:49,839 Speaker 4: and so for me to be putting on weight was weird. 99 00:05:51,400 --> 00:05:54,200 Speaker 4: So Stacy said, you know, we have to get you 100 00:05:54,279 --> 00:05:57,000 Speaker 4: to the doctor. The next thing I remember was being 101 00:05:57,000 --> 00:05:59,120 Speaker 4: at the doctor and him listening to my lungs and saying, 102 00:05:59,120 --> 00:06:00,400 Speaker 4: you need to get to the host hospital. 103 00:06:01,360 --> 00:06:04,799 Speaker 1: Wow. And at what point did they realize they were 104 00:06:04,839 --> 00:06:08,040 Speaker 1: dealing with something far more serious than the flow. 105 00:06:08,920 --> 00:06:13,440 Speaker 4: That whole first day at the emergency room, I'm thinking, well, 106 00:06:13,480 --> 00:06:15,120 Speaker 4: this is going to be something really simple and they're 107 00:06:15,120 --> 00:06:16,880 Speaker 4: going to take care of it. And then when they 108 00:06:16,880 --> 00:06:19,120 Speaker 4: started talking about admitting me, I'm like, come on, this 109 00:06:19,200 --> 00:06:21,880 Speaker 4: is this is not something like that. I don't need 110 00:06:21,920 --> 00:06:24,599 Speaker 4: to be in the hospital. This is ridiculous. I just 111 00:06:24,680 --> 00:06:27,000 Speaker 4: this sense of this, this is all just a big mistake. 112 00:06:29,400 --> 00:06:31,400 Speaker 4: By the end of that week, I was in a 113 00:06:31,440 --> 00:06:35,279 Speaker 4: medically induced coma, and I don't think I really squared 114 00:06:35,320 --> 00:06:37,880 Speaker 4: myself with that until I woke up, you know, three 115 00:06:37,880 --> 00:06:41,960 Speaker 4: and a half weeks later. What was going on going 116 00:06:41,960 --> 00:06:45,320 Speaker 4: into the hospital, it was this sense was frustration, like this, 117 00:06:45,880 --> 00:06:47,840 Speaker 4: we just need to find the thing that this is. 118 00:06:48,080 --> 00:06:51,120 Speaker 4: And this should be a simple answer. I shouldn't. I 119 00:06:51,120 --> 00:06:52,160 Speaker 4: shouldn't be here. 120 00:06:56,240 --> 00:06:59,680 Speaker 1: Though Gary didn't know it. As he endured the challenges 121 00:06:59,720 --> 00:07:03,640 Speaker 1: of his undiagnosed Castleman disease, David was hard at work 122 00:07:03,640 --> 00:07:06,560 Speaker 1: in a lab not far away. Through the creation of 123 00:07:06,600 --> 00:07:11,960 Speaker 1: the Castleman Disease Collaborative Network or CDCN, David was honoring 124 00:07:12,000 --> 00:07:15,320 Speaker 1: his mission to repurpose drugs that could treat Castleman disease 125 00:07:15,760 --> 00:07:21,200 Speaker 1: and other immuno deficiency conditions. There are only three thousand 126 00:07:21,480 --> 00:07:27,240 Speaker 1: FDA approved drugs, and ninety five percent of rare diseases 127 00:07:27,840 --> 00:07:32,720 Speaker 1: have no medical approved treatment in terms of medication. 128 00:07:32,920 --> 00:07:36,320 Speaker 2: That's right, there's so much here. I mean, all I've 129 00:07:36,320 --> 00:07:38,640 Speaker 2: been able to think about for these last ten years 130 00:07:38,920 --> 00:07:41,680 Speaker 2: is how many more drugs are sitting out there. They 131 00:07:41,720 --> 00:07:45,000 Speaker 2: could be life saving for other people and what we've learned. 132 00:07:45,160 --> 00:07:47,520 Speaker 2: The more I've done it, the more I've just been 133 00:07:47,560 --> 00:07:50,760 Speaker 2: blown away by the fact that of those three thousand drugs, 134 00:07:50,800 --> 00:07:53,239 Speaker 2: the vast majority of them are generic. Over eighty percent 135 00:07:53,240 --> 00:07:56,280 Speaker 2: of them are generic, which means that they are very 136 00:07:56,320 --> 00:07:59,880 Speaker 2: inexpensive and they're not profitable any longer because once it 137 00:08:00,040 --> 00:08:03,400 Speaker 2: drug becomes generic, then multiple manufacturers can make that drug 138 00:08:03,480 --> 00:08:06,240 Speaker 2: price plummets. And so what that means is that our 139 00:08:06,280 --> 00:08:11,200 Speaker 2: medical system doesn't study over eighty percent of our drugs 140 00:08:11,200 --> 00:08:13,200 Speaker 2: that are at the CBS to find new uses for 141 00:08:13,240 --> 00:08:15,960 Speaker 2: them because there is no incentive within our system. And 142 00:08:15,960 --> 00:08:18,080 Speaker 2: it's like, wait a minute, of the drugs, the three 143 00:08:18,160 --> 00:08:20,840 Speaker 2: thousand that can help us, eighty percent of them are 144 00:08:20,880 --> 00:08:24,280 Speaker 2: not being studied. That's crazy. 145 00:08:26,080 --> 00:08:30,160 Speaker 1: It wasn't always smooth sailing for the CDCN. David shared 146 00:08:30,200 --> 00:08:32,920 Speaker 1: his dream with Grant, his best friend from medical school, 147 00:08:33,280 --> 00:08:36,000 Speaker 1: but they were up against lots of skepticism from the 148 00:08:36,040 --> 00:08:39,880 Speaker 1: medical community to make it happen. Tell me just a 149 00:08:39,960 --> 00:08:45,560 Speaker 1: little bit about thinking outside the box in terms of 150 00:08:46,440 --> 00:08:53,200 Speaker 1: wanting to evaluate medicines that already had FDA approval but 151 00:08:53,600 --> 00:08:55,720 Speaker 1: for off label impact. 152 00:08:56,559 --> 00:09:00,000 Speaker 3: Yeah, and maybe before I do that, I'll tell you 153 00:09:00,080 --> 00:09:05,880 Speaker 3: one more story about our sort of naive optimism. When 154 00:09:06,120 --> 00:09:09,080 Speaker 3: we first realized that we were going to try to 155 00:09:09,080 --> 00:09:14,160 Speaker 3: be they, we called everyone we knew to currently be they, 156 00:09:14,440 --> 00:09:16,480 Speaker 3: which was all the researchers in the world that might 157 00:09:16,559 --> 00:09:19,040 Speaker 3: know anything about this disease. There were only twenty of 158 00:09:19,080 --> 00:09:22,440 Speaker 3: them or so. They were in France and Japan at 159 00:09:22,440 --> 00:09:25,600 Speaker 3: the NIH and we invited them all to a conference 160 00:09:25,920 --> 00:09:28,600 Speaker 3: that they might have been interested in attending anyway, and said, 161 00:09:28,679 --> 00:09:30,480 Speaker 3: if you're already going to be there, you know, please 162 00:09:30,520 --> 00:09:33,920 Speaker 3: come to this side room with David and I to 163 00:09:34,000 --> 00:09:38,720 Speaker 3: discuss Castleman disease research. And I'll never forget sitting there 164 00:09:38,840 --> 00:09:41,600 Speaker 3: at the head of the table with David said this 165 00:09:41,679 --> 00:09:44,320 Speaker 3: is David. I'm grant, you know, and we're here to 166 00:09:44,440 --> 00:09:48,960 Speaker 3: cure Castleman disease, and just seeing these researchers who had 167 00:09:48,960 --> 00:09:51,760 Speaker 3: been at this for years around the table kind of 168 00:09:52,320 --> 00:09:55,240 Speaker 3: chuckle and say, okay, kids, you know, good luck. You know, 169 00:09:55,440 --> 00:09:58,080 Speaker 3: we'll try and be helpful. It was just one of 170 00:09:58,080 --> 00:10:01,920 Speaker 3: those moments where we were young and naive enough to have 171 00:10:01,920 --> 00:10:04,080 Speaker 3: the audacity to think that we could do anything. 172 00:10:04,720 --> 00:10:09,000 Speaker 1: This passionate naivete needed to change from an inspiring concept 173 00:10:09,040 --> 00:10:11,720 Speaker 1: to a reality quickly if it was going to save 174 00:10:11,840 --> 00:10:16,560 Speaker 1: Gary from arreparable damage. After the first flare up, Gary 175 00:10:16,679 --> 00:10:19,600 Speaker 1: was now going in and out of medically induced comas, 176 00:10:19,760 --> 00:10:23,800 Speaker 1: clinging to life. He was eventually diagnosed with Castleman disease, 177 00:10:24,200 --> 00:10:28,160 Speaker 1: the same disease that plagued David years earlier. However, the 178 00:10:28,240 --> 00:10:36,280 Speaker 1: diagnosis didn't guarantee a clear path to effective treatment. When 179 00:10:36,280 --> 00:10:39,600 Speaker 1: you first woke up and you felt and saw the 180 00:10:39,600 --> 00:10:45,440 Speaker 1: physical transformations of your body coming out of that coma, 181 00:10:46,240 --> 00:10:49,720 Speaker 1: how surreal was that for you? That must have been 182 00:10:50,960 --> 00:10:55,160 Speaker 1: honestly like living an episode of the Twilight Zone. 183 00:10:55,400 --> 00:10:57,720 Speaker 4: Yeah, coming out of a coma, at least for me, 184 00:10:57,920 --> 00:10:59,959 Speaker 4: was nothing like the show it in TV and movie 185 00:11:00,120 --> 00:11:02,680 Speaker 4: where you open your eyes and you look up and 186 00:11:02,720 --> 00:11:04,840 Speaker 4: you see your loved one and you remember the last 187 00:11:04,840 --> 00:11:07,360 Speaker 4: thing that was going on. It's a kind of a 188 00:11:07,400 --> 00:11:10,280 Speaker 4: slow drift back toward reality. 189 00:11:11,840 --> 00:11:16,280 Speaker 5: And then also, you know, as the head of the family, 190 00:11:16,520 --> 00:11:21,080 Speaker 5: I can't imagine how heavily it weighed on you that 191 00:11:21,559 --> 00:11:25,920 Speaker 5: this is happening again and you're not there to physically 192 00:11:25,920 --> 00:11:26,400 Speaker 5: fight it. 193 00:11:27,440 --> 00:11:32,320 Speaker 4: Yeah, that was huge because with Jacob, I was by 194 00:11:32,440 --> 00:11:36,920 Speaker 4: Stacy's side as a caregiver, helping her take care of him, 195 00:11:37,440 --> 00:11:41,600 Speaker 4: and then in this situation, suddenly Stacy was back in 196 00:11:41,640 --> 00:11:45,840 Speaker 4: the role of caregiver, and my condition was plummeting. And 197 00:11:46,200 --> 00:11:48,199 Speaker 4: part of the reason I was so frustrated and wanted 198 00:11:48,240 --> 00:11:50,520 Speaker 4: to figure out the simple thing that this had to 199 00:11:50,559 --> 00:11:53,320 Speaker 4: be was that I didn't want to be the reason 200 00:11:53,360 --> 00:11:54,400 Speaker 4: that Stacy went. 201 00:11:54,240 --> 00:11:57,480 Speaker 1: To that again, grappling with guilt. On top of the 202 00:11:57,520 --> 00:12:02,000 Speaker 1: physical fight for his life. Even additional symptoms pile up, 203 00:12:02,880 --> 00:12:03,319 Speaker 1: and so I. 204 00:12:03,280 --> 00:12:07,000 Speaker 4: Woke up with purple hands and they felt gravelly, they 205 00:12:07,000 --> 00:12:11,960 Speaker 4: felt sandy. They were numb, but also uncomfortable. You know, 206 00:12:12,000 --> 00:12:13,880 Speaker 4: it was not the biggest pain that I had, but 207 00:12:13,960 --> 00:12:17,120 Speaker 4: it was very uncomfortable because I've always used my hands 208 00:12:17,120 --> 00:12:20,360 Speaker 4: for everything I do, and so to have them not 209 00:12:20,840 --> 00:12:26,120 Speaker 4: there was really it was freaky. Once I did wake up, 210 00:12:26,160 --> 00:12:28,240 Speaker 4: I had to be fed by hand because my arms 211 00:12:28,240 --> 00:12:30,559 Speaker 4: were so weak and my stomach had grown so large, 212 00:12:30,600 --> 00:12:32,760 Speaker 4: like I couldn't put my hands together. I didn't have 213 00:12:32,840 --> 00:12:36,960 Speaker 4: enough strength to reach up that high. So Stacy was 214 00:12:37,080 --> 00:12:39,559 Speaker 4: spoon feeding me my food when I came out of 215 00:12:39,600 --> 00:12:44,120 Speaker 4: the coma. When people talk about having an advocate, man, 216 00:12:44,200 --> 00:12:46,840 Speaker 4: I had the best doctors and nurses in the world, 217 00:12:46,960 --> 00:12:50,880 Speaker 4: And I mean I'm very grateful for that, but I 218 00:12:52,000 --> 00:12:56,400 Speaker 4: would be dead. I would be dead without Stacy if 219 00:12:56,840 --> 00:12:58,360 Speaker 4: she hadn't been there to do what she did. 220 00:13:00,000 --> 00:13:03,160 Speaker 1: Local doctors had exhausted all of the known treatments for 221 00:13:03,240 --> 00:13:07,720 Speaker 1: Castleman disease and had decided to transfer Gary to the 222 00:13:07,760 --> 00:13:10,800 Speaker 1: hospital of the University of Pennsylvania for more help. 223 00:13:11,559 --> 00:13:16,240 Speaker 4: David Figenbaum had released a study on Castleman disease. Actually 224 00:13:16,280 --> 00:13:18,440 Speaker 4: the day I went into the hospital, he published this 225 00:13:18,679 --> 00:13:23,320 Speaker 4: in esh newsletter for Heematology, because I think the journal 226 00:13:23,360 --> 00:13:26,200 Speaker 4: is called Blood it is. And someone at the second 227 00:13:26,200 --> 00:13:29,480 Speaker 4: hospital had seen that article. One of the people said, well, 228 00:13:29,559 --> 00:13:33,160 Speaker 4: this guy, he has the disease and he's fighting it. 229 00:13:33,280 --> 00:13:36,520 Speaker 4: And so I ended up done at penn and I'm. 230 00:13:36,400 --> 00:13:39,920 Speaker 2: Told, hey, there's a patient with your subtype of Castleman's. 231 00:13:40,000 --> 00:13:42,920 Speaker 2: You know, this very rare subtype of Castlemans that's here 232 00:13:43,160 --> 00:13:45,200 Speaker 2: in the ICU. Can you go up and see the patient? 233 00:13:45,200 --> 00:13:47,880 Speaker 2: And at this stage, I'm working in the hospital, I'm 234 00:13:47,920 --> 00:13:50,040 Speaker 2: running the center that does a lot of research, but 235 00:13:50,120 --> 00:13:53,240 Speaker 2: I'm like fiercely avoiding the ICU, like I don't want 236 00:13:53,280 --> 00:13:55,080 Speaker 2: to walk anywhere near the ic I got some bad 237 00:13:55,120 --> 00:13:56,640 Speaker 2: memories FM when I was in the ICU. 238 00:13:56,960 --> 00:13:59,880 Speaker 4: And I was nervous. It was almost I was nervous 239 00:13:59,920 --> 00:14:02,560 Speaker 4: like you would be for a job application, like like 240 00:14:02,600 --> 00:14:05,000 Speaker 4: I hope he lets me in, you know what I mean. 241 00:14:05,400 --> 00:14:08,320 Speaker 4: It's so weird. And of course you just hear, you know, 242 00:14:08,400 --> 00:14:12,000 Speaker 4: doctor researcher, and you hear the name doctor Fagenbaum, and 243 00:14:12,160 --> 00:14:14,280 Speaker 4: it's a beautiful name. It just it kind of sounds 244 00:14:14,320 --> 00:14:18,080 Speaker 4: like old doctor. So I'm picturing an old, gray haired 245 00:14:18,120 --> 00:14:22,040 Speaker 4: guy with glasses and probably broken from the disease, but 246 00:14:22,280 --> 00:14:26,520 Speaker 4: still moving on. And then this young guy comes in 247 00:14:27,120 --> 00:14:30,160 Speaker 4: looking full of life, and like all the fight in 248 00:14:30,240 --> 00:14:33,520 Speaker 4: him and the spirit and the keenness of his intellect 249 00:14:33,600 --> 00:14:37,000 Speaker 4: and how compassionate he was was just like, wow, okay, 250 00:14:37,560 --> 00:14:40,080 Speaker 4: I'll take a pass on lymphoma. I'll take what that 251 00:14:40,120 --> 00:14:43,360 Speaker 4: guy has. It's the craziest thing I remember, like it 252 00:14:43,400 --> 00:14:47,920 Speaker 4: was yesterday. I see a patient in the bad who 253 00:14:48,000 --> 00:14:51,680 Speaker 4: is so sick. All of his organs are obviously failing, 254 00:14:51,880 --> 00:14:55,000 Speaker 4: and he looks just like me when I was at 255 00:14:55,040 --> 00:14:58,160 Speaker 4: my sickest, Like he's got the fluid. When you lose 256 00:14:58,200 --> 00:15:00,560 Speaker 4: the muscles in your face, you sort of look like, 257 00:15:00,560 --> 00:15:02,560 Speaker 4: you know, you have these dense next to your eyes. 258 00:15:03,240 --> 00:15:05,000 Speaker 2: Everything. It was like I'm looking at I'm like, oh 259 00:15:05,040 --> 00:15:07,960 Speaker 2: my gosh, he he just looks so much like me. 260 00:15:08,000 --> 00:15:11,200 Speaker 2: And then b I look and I see his wife Stacy, 261 00:15:11,400 --> 00:15:15,119 Speaker 2: and I like see in her eyes this deep concern, 262 00:15:15,480 --> 00:15:18,560 Speaker 2: this care. You can just see right away that like, 263 00:15:19,040 --> 00:15:21,480 Speaker 2: you know, this is her everything right now in the 264 00:15:21,520 --> 00:15:24,520 Speaker 2: hospital bed and she's losing him, and it's like you 265 00:15:24,600 --> 00:15:27,240 Speaker 2: just feel it when you see her. And I look 266 00:15:27,280 --> 00:15:33,680 Speaker 2: at this window and I'm like, I recognize this view. 267 00:15:34,320 --> 00:15:37,240 Speaker 1: You've said that when David first visited you that you 268 00:15:37,320 --> 00:15:41,600 Speaker 1: immediately clutched at the hope that you could get there, 269 00:15:42,040 --> 00:15:45,360 Speaker 1: that you could get where he is. Did that tap 270 00:15:45,400 --> 00:15:49,920 Speaker 1: into your like marine determination spirit? 271 00:15:50,920 --> 00:15:53,600 Speaker 4: Yeah, that, and in particular that he was leading a 272 00:15:53,640 --> 00:15:56,240 Speaker 4: research effort and said that I could contribute to it, 273 00:15:56,720 --> 00:15:58,600 Speaker 4: that I could not only fight my way out of 274 00:15:58,600 --> 00:16:02,400 Speaker 4: the bed, but help him the whole disease was huge. 275 00:16:02,920 --> 00:16:07,000 Speaker 4: To turn from this helpless two hundred and sixty pound 276 00:16:07,400 --> 00:16:11,600 Speaker 4: bag of fluid into somebody who was fighting was a 277 00:16:11,680 --> 00:16:15,520 Speaker 4: huge turning point for me up until that point. It 278 00:16:15,560 --> 00:16:17,440 Speaker 4: was something that I was looking for, and that was 279 00:16:17,480 --> 00:16:19,880 Speaker 4: part of my frustration, like why can't we take care 280 00:16:19,880 --> 00:16:22,440 Speaker 4: of this? Why can't we hit this back, and so 281 00:16:22,720 --> 00:16:24,680 Speaker 4: that was the turning point where he said, you know, 282 00:16:24,720 --> 00:16:28,600 Speaker 4: will you contribute samples to the research and that was 283 00:16:28,720 --> 00:16:31,240 Speaker 4: no brainer I was. I was like, hell, yes. 284 00:16:32,320 --> 00:16:34,960 Speaker 2: I remember telling him that you know, we're going to 285 00:16:35,000 --> 00:16:37,120 Speaker 2: beat this, and I really believe it because i'd been 286 00:16:37,120 --> 00:16:39,640 Speaker 2: in his bed, although a minute or two later I 287 00:16:39,760 --> 00:16:42,160 Speaker 2: learned that literally had been in his bed because when 288 00:16:42,160 --> 00:16:44,960 Speaker 2: I walked out, one of the nurses came over and 289 00:16:44,960 --> 00:16:47,640 Speaker 2: gave me a hug, and I actually didn't know who 290 00:16:47,680 --> 00:16:49,360 Speaker 2: she was or you know, what was going on, and 291 00:16:49,400 --> 00:16:52,080 Speaker 2: she said, I was your nurse when you were here 292 00:16:52,160 --> 00:16:54,520 Speaker 2: a few years ago, which I didn't realize. Was again, 293 00:16:54,520 --> 00:16:56,920 Speaker 2: when you're a nice you oftentimes you know you're just 294 00:16:57,040 --> 00:16:59,480 Speaker 2: out of it, and so I didn't realize that. And 295 00:16:59,520 --> 00:17:02,400 Speaker 2: she said, and this was your hospital room, and I 296 00:17:02,440 --> 00:17:04,560 Speaker 2: was like, oh my gosh. That's why I recognized that 297 00:17:04,640 --> 00:17:07,399 Speaker 2: view out the window because that's the window I'd been 298 00:17:07,440 --> 00:17:09,280 Speaker 2: looking at for weeks and weeks and weeks, and I 299 00:17:09,320 --> 00:17:11,320 Speaker 2: just dreamed. I was like, one day I could get 300 00:17:11,359 --> 00:17:11,840 Speaker 2: out of here. 301 00:17:12,400 --> 00:17:15,600 Speaker 1: I get the hairs on my arms, stand up on 302 00:17:15,680 --> 00:17:21,200 Speaker 1: that It's amazing. In the same exact shoes and room 303 00:17:21,400 --> 00:17:24,680 Speaker 1: as David once was. The challenge was now to rethink 304 00:17:24,760 --> 00:17:28,480 Speaker 1: Gary's treatment. Under the care of David and the CDCN, 305 00:17:28,880 --> 00:17:32,719 Speaker 1: who were busily working behind the scenes on repurposed treatment 306 00:17:32,840 --> 00:17:36,800 Speaker 1: options for rare diseases, there was a renewed sense of hope. 307 00:17:37,920 --> 00:17:39,880 Speaker 2: Well, first you got a Castleman's drug that we thought 308 00:17:39,880 --> 00:17:42,280 Speaker 2: would work, and that drug seemed to work a little bit, 309 00:17:42,600 --> 00:17:44,800 Speaker 2: and then he relapsed, and then we ended up giving 310 00:17:44,880 --> 00:17:48,240 Speaker 2: him a bunch of chemotherapy that sort of seemed to 311 00:17:48,440 --> 00:17:51,080 Speaker 2: work and get him out of this thing. But the 312 00:17:51,200 --> 00:17:53,880 Speaker 2: question became, how do we keep it from coming back. 313 00:17:54,520 --> 00:17:57,520 Speaker 2: We were getting blood samples on Gary basically every day, 314 00:17:57,600 --> 00:17:58,920 Speaker 2: and as soon as we get the blood sample, we'd 315 00:17:59,000 --> 00:18:01,640 Speaker 2: run down to the lab. We'd run something called flow sytometry, 316 00:18:01,840 --> 00:18:04,760 Speaker 2: and we were getting results back and looking at those 317 00:18:04,800 --> 00:18:06,440 Speaker 2: results and then saying, you know, is there a different 318 00:18:06,480 --> 00:18:08,240 Speaker 2: drug we should be using based on what we're seeing 319 00:18:08,240 --> 00:18:11,320 Speaker 2: in the lab. And it was like this race against time. 320 00:18:12,119 --> 00:18:15,160 Speaker 1: It was clear to everyone that Gary's time was running out. 321 00:18:15,359 --> 00:18:18,680 Speaker 1: His body was too weak to push through continued chemotherapy. 322 00:18:19,240 --> 00:18:23,439 Speaker 1: David and the CDCN needed to produce results immediately if 323 00:18:23,480 --> 00:18:25,160 Speaker 1: they were going to save Gary's life. 324 00:18:25,960 --> 00:18:28,480 Speaker 2: I get so excited every time we save a life 325 00:18:28,520 --> 00:18:30,440 Speaker 2: and we find a drug that can help someone, and 326 00:18:30,600 --> 00:18:34,679 Speaker 2: that's it's just incredible. But even more incredible, or at 327 00:18:34,760 --> 00:18:37,040 Speaker 2: least even greater of a feeling than how thankful we 328 00:18:37,080 --> 00:18:39,399 Speaker 2: are when it works, is just how devastated we are 329 00:18:39,440 --> 00:18:41,960 Speaker 2: when these drugs don't work. And it's both of those 330 00:18:42,000 --> 00:18:45,760 Speaker 2: emotions that just drive us to keep working. You get 331 00:18:45,800 --> 00:18:47,680 Speaker 2: a carrot and a stick, and it's just like you're 332 00:18:47,720 --> 00:18:51,560 Speaker 2: just constantly chasing, and you get constantly motivated by both 333 00:18:52,000 --> 00:18:54,320 Speaker 2: the people who are here because of our work and 334 00:18:54,359 --> 00:18:56,800 Speaker 2: also the people who aren't here despite our work. 335 00:18:57,600 --> 00:19:02,359 Speaker 1: Gary, was there a time time that you felt like 336 00:19:02,680 --> 00:19:06,760 Speaker 1: it was pointless to keep fighting? Were you in that 337 00:19:07,080 --> 00:19:10,600 Speaker 1: much exhaustion and pain at any point to think I 338 00:19:10,720 --> 00:19:13,440 Speaker 1: can't do this? And what was it that pulled you 339 00:19:13,560 --> 00:19:14,840 Speaker 1: out of that? So? 340 00:19:15,359 --> 00:19:18,960 Speaker 4: I would visualize them as scenarios, But what I kept 341 00:19:19,000 --> 00:19:22,200 Speaker 4: feeling was myself approaching some sort of a boundary or 342 00:19:23,760 --> 00:19:25,560 Speaker 4: a doorway or that sort of thing. And it wasn't 343 00:19:25,640 --> 00:19:27,720 Speaker 4: like a blessed realm where your loved ones come and 344 00:19:27,840 --> 00:19:30,399 Speaker 4: say now is not your time? Or you know, there 345 00:19:30,440 --> 00:19:33,280 Speaker 4: were no singing or anything like that. I would always 346 00:19:33,280 --> 00:19:35,920 Speaker 4: see my wife and my kids, and I would turn 347 00:19:35,960 --> 00:19:39,760 Speaker 4: away from that and turn turn toward them with my will. 348 00:19:40,600 --> 00:19:43,639 Speaker 4: The first flare was I am not going anywhere near there. 349 00:19:43,960 --> 00:19:46,880 Speaker 4: I want to find the way toward what I knew. 350 00:19:47,680 --> 00:19:50,399 Speaker 4: I wanted to find my way toward awareness. I was 351 00:19:50,480 --> 00:19:52,919 Speaker 4: so frustrated that we know what this is. Why am 352 00:19:52,920 --> 00:19:54,760 Speaker 4: I still here? Why am I stuck in the state. 353 00:19:55,400 --> 00:19:58,800 Speaker 4: None of us liked the lows. I wish I could 354 00:19:58,800 --> 00:20:02,760 Speaker 4: give all these lows back. But the lows in some 355 00:20:02,960 --> 00:20:06,800 Speaker 4: ways can really create this sort of like potential energy 356 00:20:06,920 --> 00:20:10,200 Speaker 4: or like this like slingshot effect, and then it's that 357 00:20:10,720 --> 00:20:14,159 Speaker 4: horrible moment that results in action, and that action results 358 00:20:14,240 --> 00:20:16,000 Speaker 4: in something that we celebrate. 359 00:20:21,520 --> 00:20:25,439 Speaker 1: We'll be right back with Symptomatic a Medical Mystery Podcast. 360 00:20:29,160 --> 00:20:37,200 Speaker 1: Now back to Symptomatic a Medical Mystery Podcast. Gary Gravina, 361 00:20:37,400 --> 00:20:40,880 Speaker 1: a former carpenter and marine, went from his usual routine 362 00:20:41,000 --> 00:20:44,200 Speaker 1: to being placed in a medically induced coma within a week. 363 00:20:44,920 --> 00:20:47,480 Speaker 1: Having supported his wife through the loss of his stepson, 364 00:20:47,920 --> 00:20:51,600 Speaker 1: Gary was determined to prevent her from experiencing that pain again. 365 00:20:52,200 --> 00:20:55,320 Speaker 1: But after the treatment for his Castleman disease had failed, 366 00:20:55,760 --> 00:20:59,719 Speaker 1: Gary's last hope was the research on alternative treatments from 367 00:20:59,760 --> 00:21:07,359 Speaker 1: doctor David Fagenbaum. Initially, though I know that they had 368 00:21:07,440 --> 00:21:10,919 Speaker 1: tried a medicine that had worked on other Castleman's patients 369 00:21:11,000 --> 00:21:15,000 Speaker 1: that didn't work on you. Was there in those initial 370 00:21:15,520 --> 00:21:20,520 Speaker 1: attempts to find what for you could be the silver bullet? 371 00:21:21,359 --> 00:21:24,360 Speaker 1: Was it devastating or was it more just like bring 372 00:21:24,480 --> 00:21:25,920 Speaker 1: on the next No? 373 00:21:26,200 --> 00:21:30,040 Speaker 4: And when I think about David having five flares, there 374 00:21:30,119 --> 00:21:33,960 Speaker 4: was a difference in my energy. I was on celtuxamab 375 00:21:34,320 --> 00:21:36,120 Speaker 4: to get out of the first flare, and I thought 376 00:21:36,200 --> 00:21:37,760 Speaker 4: that was going to do it. And I think after 377 00:21:37,880 --> 00:21:41,040 Speaker 4: my third treatment, my blood all looked like it was 378 00:21:41,119 --> 00:21:45,040 Speaker 4: trending in the right direction. And then like a week later, 379 00:21:45,520 --> 00:21:47,760 Speaker 4: I was going into my second flare and it was 380 00:21:47,960 --> 00:21:51,480 Speaker 4: just not working anymore. It had quit, and I thought, 381 00:21:51,560 --> 00:21:54,800 Speaker 4: oh no, not again, Like can this just be some 382 00:21:54,960 --> 00:21:58,040 Speaker 4: other thing that's going on a side effect? But it 383 00:21:58,160 --> 00:22:01,960 Speaker 4: had that same feeling, that same I cannot lift myself 384 00:22:02,119 --> 00:22:06,120 Speaker 4: to push through this. The day before at physical therapy, 385 00:22:06,960 --> 00:22:09,120 Speaker 4: I was pushing and pushing and getting better and better 386 00:22:09,160 --> 00:22:11,520 Speaker 4: results every day, and there were stuff I just couldn't 387 00:22:11,560 --> 00:22:14,760 Speaker 4: do that day, and the physical therapist said, you know, 388 00:22:14,840 --> 00:22:17,199 Speaker 4: make sure you reach out to your doctor and let 389 00:22:17,280 --> 00:22:19,520 Speaker 4: them know that you've had this little turning point. 390 00:22:20,119 --> 00:22:23,760 Speaker 1: Despite some signs of relief and a brief return to routine, 391 00:22:24,320 --> 00:22:29,159 Speaker 1: Castleman continually returned, sending Gary back to the ICU and 392 00:22:29,359 --> 00:22:31,040 Speaker 1: David back to the drawing board. 393 00:22:31,920 --> 00:22:35,280 Speaker 4: Even during my second player being comatose again. That fueled 394 00:22:36,000 --> 00:22:38,639 Speaker 4: the anger that we know what this is? Why am 395 00:22:38,640 --> 00:22:41,080 Speaker 4: I stuck in the state again? And you're in the 396 00:22:41,560 --> 00:22:43,840 Speaker 4: ice your room, and you know all the things are 397 00:22:43,880 --> 00:22:46,560 Speaker 4: connected to you, and you're just kind of you feel 398 00:22:46,600 --> 00:22:50,280 Speaker 4: apart from everything, and you start to wonder why am 399 00:22:50,320 --> 00:22:52,520 Speaker 4: I being singled out? Like am I being punished? 400 00:22:52,560 --> 00:22:53,119 Speaker 3: What did I do? 401 00:22:53,320 --> 00:22:56,119 Speaker 4: I must have done something to deserve this, And I 402 00:22:56,240 --> 00:22:58,960 Speaker 4: can just remember crying tears of frustration. 403 00:23:01,880 --> 00:23:02,240 Speaker 5: David. 404 00:23:03,080 --> 00:23:06,040 Speaker 1: It has to be kind of like solving a puzzle 405 00:23:06,119 --> 00:23:07,840 Speaker 1: and playing chess at the same time. 406 00:23:08,720 --> 00:23:11,399 Speaker 2: Yes, that's exactly right. And I think that for me. 407 00:23:11,680 --> 00:23:14,240 Speaker 2: You know, before I got into this world, when I 408 00:23:14,359 --> 00:23:17,120 Speaker 2: heard a doctor say we've tried everything, there's nothing more 409 00:23:17,160 --> 00:23:20,440 Speaker 2: that we can do. I sort of assumed that meant that, 410 00:23:20,600 --> 00:23:23,200 Speaker 2: like there were no more chess pieces on the chess 411 00:23:23,280 --> 00:23:26,560 Speaker 2: board and there were no more puzzle pieces. But I 412 00:23:26,600 --> 00:23:30,040 Speaker 2: think what I've subsequently learned is that when a doctor 413 00:23:30,080 --> 00:23:33,239 Speaker 2: says we've tried everything, many times I think they are 414 00:23:33,400 --> 00:23:36,000 Speaker 2: right and that there isn't actually something that could help 415 00:23:36,080 --> 00:23:39,440 Speaker 2: that patient. But many times I also believe, and I've 416 00:23:39,480 --> 00:23:42,399 Speaker 2: seen and witnessed that actually there is something that we 417 00:23:42,480 --> 00:23:45,600 Speaker 2: can do. There is that chess piece that's on the board, 418 00:23:46,480 --> 00:23:50,800 Speaker 2: but we the medical community, just haven't unlocked the potential 419 00:23:50,880 --> 00:23:51,040 Speaker 2: of it. 420 00:23:52,280 --> 00:23:55,600 Speaker 1: Grant breaks down why rare diseases are often referred to 421 00:23:55,920 --> 00:23:56,640 Speaker 1: as orphans. 422 00:23:57,240 --> 00:23:59,440 Speaker 3: An orphan disease is very much what it sounds like. 423 00:23:59,560 --> 00:24:01,959 Speaker 3: It's a disease that very few people get, defined by 424 00:24:02,040 --> 00:24:05,720 Speaker 3: less than two hundred thousand people having it, and it 425 00:24:05,920 --> 00:24:09,920 Speaker 3: actually represents the majority of the diseases that are out there, 426 00:24:10,480 --> 00:24:13,080 Speaker 3: depending on how you count diseases. But let's say if 427 00:24:13,080 --> 00:24:17,520 Speaker 3: there's twelve thousand, the vast majority, let's say almost nine 428 00:24:17,600 --> 00:24:21,200 Speaker 3: thousand of those are rare, and most of those don't 429 00:24:21,320 --> 00:24:24,600 Speaker 3: have an approved treatment, not a single approved treatment. Ninety 430 00:24:24,640 --> 00:24:26,879 Speaker 3: five percent of rare diseasees don't have a single afday 431 00:24:26,920 --> 00:24:27,600 Speaker 3: approved treatment. 432 00:24:27,840 --> 00:24:31,480 Speaker 1: Wow, because there's not the money in it, because the 433 00:24:31,560 --> 00:24:32,840 Speaker 1: numbers aren't driving it. 434 00:24:33,560 --> 00:24:37,760 Speaker 3: Yeah, and you know, the pharmaceutical industry. It's a business, 435 00:24:38,040 --> 00:24:42,119 Speaker 3: and they are shared holders, and there's fiduciary obligations to 436 00:24:42,520 --> 00:24:47,159 Speaker 3: those shareholders to make money and return their capital. So 437 00:24:47,280 --> 00:24:49,760 Speaker 3: I don't blame them for not focusing on diseases that 438 00:24:49,840 --> 00:24:53,240 Speaker 3: don't make money. That's how the free market works. But 439 00:24:53,359 --> 00:24:55,800 Speaker 3: that means that there's a lot of diseases that ultimately 440 00:24:56,200 --> 00:24:59,919 Speaker 3: get neglected and there's no incentive to focus on them, 441 00:25:00,440 --> 00:25:01,679 Speaker 3: and so that really bothered us. 442 00:25:03,240 --> 00:25:06,399 Speaker 1: Gary David talks about a point where he was told 443 00:25:06,680 --> 00:25:10,440 Speaker 1: by one of the nurses that you weren't gonna make it. 444 00:25:11,200 --> 00:25:13,760 Speaker 4: Yeah, and I think there was at least one night 445 00:25:13,880 --> 00:25:17,600 Speaker 4: in both of my flares where it was just that close. 446 00:25:17,720 --> 00:25:20,600 Speaker 4: But I was in a coma and he was there 447 00:25:21,000 --> 00:25:23,800 Speaker 4: with Stacy during the second flare, and I was just, 448 00:25:24,200 --> 00:25:25,719 Speaker 4: you know, everything in me was tanking. 449 00:25:26,680 --> 00:25:30,879 Speaker 2: He was on a ventilator, he was receiving what are 450 00:25:30,920 --> 00:25:33,359 Speaker 2: called pressers, which is basically, when your heart's failing, you 451 00:25:33,520 --> 00:25:36,080 Speaker 2: give drugs to keep the heart beating as best as 452 00:25:36,119 --> 00:25:39,280 Speaker 2: it can, even though it's like basically dying. Without the pressers, 453 00:25:39,400 --> 00:25:41,520 Speaker 2: you die. But just trying to say, you know, we're 454 00:25:41,840 --> 00:25:43,720 Speaker 2: we're still looking for drugs for you, Gary, like I'm 455 00:25:43,720 --> 00:25:45,320 Speaker 2: gonna take your sample to the lab. We're going to 456 00:25:45,440 --> 00:25:48,440 Speaker 2: keep fighting for you. And as I walked out of 457 00:25:48,480 --> 00:25:52,680 Speaker 2: his room, I remember his nurse pulling me aside and saying, David, 458 00:25:52,720 --> 00:25:54,760 Speaker 2: this is it. You know, I'm an ice, you nurse, 459 00:25:54,800 --> 00:25:57,440 Speaker 2: this is what I do. I'm seeing the changes in 460 00:25:57,480 --> 00:26:00,200 Speaker 2: his hands and his feet that occur when they're is 461 00:26:00,280 --> 00:26:03,640 Speaker 2: no coming back, Like, yes, his heart is technically beating. Yes, 462 00:26:03,680 --> 00:26:06,960 Speaker 2: he's technically breathing because of what we're doing medically, but 463 00:26:07,119 --> 00:26:10,320 Speaker 2: he's not going to come back from this. And I 464 00:26:10,480 --> 00:26:13,639 Speaker 2: just remember being so so devastated to hear that, and 465 00:26:13,760 --> 00:26:17,000 Speaker 2: then at the same time remember still running down the 466 00:26:17,080 --> 00:26:20,119 Speaker 2: hall to the lab and still running the experiments because 467 00:26:20,160 --> 00:26:21,840 Speaker 2: like who knows. 468 00:26:22,400 --> 00:26:25,800 Speaker 4: And he was telling Stacy, there is hope, don't give 469 00:26:25,880 --> 00:26:30,560 Speaker 4: up hope. And as he was leaving, this ICU nurse 470 00:26:30,680 --> 00:26:33,359 Speaker 4: who had actually been there when he was there, said, 471 00:26:33,520 --> 00:26:35,359 Speaker 4: you should not have told her that you're giving her 472 00:26:35,400 --> 00:26:37,239 Speaker 4: false hope. He's not going to make it through the night. 473 00:26:38,160 --> 00:26:40,800 Speaker 4: And my understanding is she went in and told Stacy 474 00:26:41,359 --> 00:26:43,399 Speaker 4: he's that bad. You need to be ready for that. 475 00:26:44,040 --> 00:26:46,000 Speaker 2: And we still ran the fless atometry and a sample, 476 00:26:46,040 --> 00:26:47,680 Speaker 2: and we still thought about work for the next drug 477 00:26:47,800 --> 00:26:48,679 Speaker 2: be but I. 478 00:26:48,720 --> 00:26:49,600 Speaker 4: Mean it to them, meant. 479 00:26:53,600 --> 00:26:56,520 Speaker 1: Gary not only survived the night, but made it through 480 00:26:56,640 --> 00:26:59,879 Speaker 1: the entire flare up. David and the CDCN found it 481 00:27:00,000 --> 00:27:04,280 Speaker 1: treatment regimen that put his Castleman disease into remission, one 482 00:27:04,359 --> 00:27:08,560 Speaker 1: that was originally developed and approved to treat lymphoma. As 483 00:27:08,640 --> 00:27:12,040 Speaker 1: the weeks passed and turned into months, they realized this 484 00:27:12,280 --> 00:27:17,480 Speaker 1: repurposed to medicine had given Gary a second chance at life. So, David, 485 00:27:17,520 --> 00:27:20,240 Speaker 1: if you can think of what if you look back, 486 00:27:20,640 --> 00:27:23,840 Speaker 1: is probably the highest happiest moment in terms of Gary. 487 00:27:24,600 --> 00:27:28,200 Speaker 2: There are a few. I think seeing him get into 488 00:27:28,280 --> 00:27:31,000 Speaker 2: a wheelchair and get rolled out of his hospital room 489 00:27:31,840 --> 00:27:34,760 Speaker 2: was just amazing. You know, shortly before that we didn't 490 00:27:34,760 --> 00:27:35,840 Speaker 2: know if he was going to make it, and then 491 00:27:36,240 --> 00:27:38,040 Speaker 2: now I get to watch him, you know, get wheeled 492 00:27:38,040 --> 00:27:38,560 Speaker 2: down the hall. 493 00:27:39,200 --> 00:27:41,600 Speaker 4: If I don't feel a flare coming on, I have today, 494 00:27:41,680 --> 00:27:45,200 Speaker 4: and today is beautiful. It's good. It makes me enjoy 495 00:27:45,720 --> 00:27:49,919 Speaker 4: moments more, and it makes me more ready to accept 496 00:27:50,040 --> 00:27:53,800 Speaker 4: other setbacks because a different sense of scale and proportion 497 00:27:54,400 --> 00:27:58,040 Speaker 4: when problems arise, I see what can continue. I see 498 00:27:58,040 --> 00:28:01,000 Speaker 4: a way to fight through those things a little better 499 00:28:01,160 --> 00:28:03,760 Speaker 4: knowing that, you know, if I wake up tomorrow, that 500 00:28:03,840 --> 00:28:05,840 Speaker 4: could be the last thing I remember for a long 501 00:28:05,960 --> 00:28:08,600 Speaker 4: time before I start that fight all over again. 502 00:28:09,280 --> 00:28:12,800 Speaker 1: Grant and David maintain their collaboration through the early days 503 00:28:12,840 --> 00:28:16,639 Speaker 1: of their divergent career paths, continually coming back to the 504 00:28:16,760 --> 00:28:22,000 Speaker 1: idea of scaling the cdcn's research. Impacted by Gary's experience 505 00:28:22,280 --> 00:28:26,479 Speaker 1: and the rise of AI data aggregation, they saw new 506 00:28:26,560 --> 00:28:30,920 Speaker 1: potential for revolutionizing their approach to repurposing medicines. 507 00:28:31,160 --> 00:28:32,800 Speaker 2: And so Grant and I spent a lot of time 508 00:28:32,840 --> 00:28:35,600 Speaker 2: thinking about could we start an initiative, an effort to 509 00:28:35,760 --> 00:28:40,360 Speaker 2: try to unlock more uses for fdapproved drugs. In about 510 00:28:40,480 --> 00:28:42,960 Speaker 2: two years ago is when we launched this nonprofit called 511 00:28:43,000 --> 00:28:46,520 Speaker 2: every Year, and we are on a mission to unlock. 512 00:28:46,200 --> 00:28:50,000 Speaker 3: The life saving potential of every FDA approved medication to 513 00:28:50,080 --> 00:28:53,320 Speaker 3: treat every disease that it possibly can. There's nothing more 514 00:28:53,360 --> 00:28:57,520 Speaker 3: motivating that seeing a patient that is now able to 515 00:28:57,640 --> 00:29:00,160 Speaker 3: be with their family and live their life to their 516 00:29:00,200 --> 00:29:03,920 Speaker 3: fullest because of the science that you did. It's an 517 00:29:03,960 --> 00:29:07,800 Speaker 3: amazing thing that you get to participate in. And so 518 00:29:07,960 --> 00:29:10,840 Speaker 3: that's always the sort of the guiding light, the north star. 519 00:29:13,880 --> 00:29:18,400 Speaker 1: So David how did Gary's case play a big part 520 00:29:18,440 --> 00:29:20,200 Speaker 1: of the evolution of every cure? 521 00:29:20,880 --> 00:29:23,040 Speaker 2: You know, my book's called Chasing My Cure, because of 522 00:29:23,120 --> 00:29:26,000 Speaker 2: course this all started out well, even before Chasing My Cure, 523 00:29:26,040 --> 00:29:29,600 Speaker 2: it was obviously witnessing my mom's battle, but this all 524 00:29:29,680 --> 00:29:32,880 Speaker 2: really started with Chasing My Cure. And I've said before 525 00:29:32,960 --> 00:29:34,280 Speaker 2: and I really believe it, we should have called it 526 00:29:34,360 --> 00:29:36,320 Speaker 2: Chasing our Cure, because, as you know, and as you've 527 00:29:36,400 --> 00:29:38,560 Speaker 2: heard us discussed, there were a lot of people part 528 00:29:38,600 --> 00:29:40,760 Speaker 2: of us. It was actually not me, it was a 529 00:29:40,800 --> 00:29:42,440 Speaker 2: lot of us, But it started out that way. But 530 00:29:42,520 --> 00:29:44,960 Speaker 2: then for every patient like Gary, for every patient like 531 00:29:45,080 --> 00:29:47,760 Speaker 2: Kyla who's getting ready to go off to college because 532 00:29:47,760 --> 00:29:49,840 Speaker 2: we discovered a drug to save her life just before 533 00:29:50,040 --> 00:29:53,160 Speaker 2: she would have passed, and patients like Joseph who right 534 00:29:53,240 --> 00:29:56,200 Speaker 2: now is recovering after we found a drug to save 535 00:29:56,280 --> 00:29:59,240 Speaker 2: his life just a few months ago. Each one of 536 00:29:59,320 --> 00:30:03,040 Speaker 2: those patients has just led us to say, we are 537 00:30:03,120 --> 00:30:05,040 Speaker 2: so happy we did this for them, But how many 538 00:30:05,080 --> 00:30:05,880 Speaker 2: more they're out there? 539 00:30:06,760 --> 00:30:10,160 Speaker 3: And what began to dawn on us throughout the years, 540 00:30:10,280 --> 00:30:13,800 Speaker 3: because my career went off into the world of machine 541 00:30:13,840 --> 00:30:17,640 Speaker 3: learning and AI, was that the way to unlock this 542 00:30:17,800 --> 00:30:20,720 Speaker 3: problem that we have been able to start as a 543 00:30:20,800 --> 00:30:25,280 Speaker 3: business is potentially to use artificial intelligence and structured as 544 00:30:25,280 --> 00:30:30,000 Speaker 3: a nonprofit, and that was really what unlocked our next 545 00:30:30,280 --> 00:30:34,120 Speaker 3: sort of journey, which was become every cure grant. 546 00:30:34,320 --> 00:30:38,520 Speaker 1: It's brilliant, it really is. A lot of people are 547 00:30:39,520 --> 00:30:42,240 Speaker 1: frightened by AI, but I can't think of a more 548 00:30:42,280 --> 00:30:43,560 Speaker 1: wonderful way to utilize it. 549 00:30:44,200 --> 00:30:48,000 Speaker 3: This technology could be utilized in maybe a different context 550 00:30:48,800 --> 00:30:51,560 Speaker 3: that maybe instead of focusing on one drug and one 551 00:30:51,680 --> 00:30:55,560 Speaker 3: disease at a time for a company, maybe we could 552 00:30:55,600 --> 00:30:59,880 Speaker 3: widen the lens. Maybe we could look across all diseases 553 00:31:00,240 --> 00:31:05,040 Speaker 3: and all drugs and find the interconnectivity between them to 554 00:31:05,120 --> 00:31:07,800 Speaker 3: figure out which drugs should work for which diseases. 555 00:31:08,600 --> 00:31:12,160 Speaker 1: With all the conversations and fear around AI and its 556 00:31:12,160 --> 00:31:16,760 Speaker 1: evolution upending certain industries, it's heartening to see a powerful 557 00:31:16,880 --> 00:31:21,800 Speaker 1: and potentially transformative application to save people's lives and offer 558 00:31:21,920 --> 00:31:24,240 Speaker 1: different treatment options for rare diseases. 559 00:31:25,160 --> 00:31:27,880 Speaker 2: Over the last few years, even just the last two years, 560 00:31:28,640 --> 00:31:32,200 Speaker 2: there has been so many advances so that whereas what 561 00:31:32,280 --> 00:31:33,760 Speaker 2: we used to do in my lab, where we would 562 00:31:33,760 --> 00:31:36,880 Speaker 2: study Castlin disease for example, or related diseases, you know, 563 00:31:36,960 --> 00:31:41,280 Speaker 2: we spend years working on a proteomic study or sequencing study, 564 00:31:41,320 --> 00:31:44,480 Speaker 2: for example, years to come up with an insight. We're 565 00:31:44,480 --> 00:31:48,160 Speaker 2: really proud of the progress we've made. But now utilizing 566 00:31:48,240 --> 00:31:52,080 Speaker 2: artificial intelligence, we can actually apply AI to the world's 567 00:31:52,120 --> 00:31:53,120 Speaker 2: biomedical knowledge. 568 00:31:53,640 --> 00:31:56,200 Speaker 3: And we would talk all the time about what is 569 00:31:56,240 --> 00:31:59,520 Speaker 3: the potential here, what is the potential to scale what's 570 00:31:59,560 --> 00:32:02,920 Speaker 3: happening in lab by doing it in the data and 571 00:32:02,960 --> 00:32:05,240 Speaker 3: then doing it beyond just one drug and one disease 572 00:32:05,560 --> 00:32:07,720 Speaker 3: at a time, And we would check in on this 573 00:32:07,960 --> 00:32:12,800 Speaker 3: every few years. Twenty sixteen, it wasn't really possible to 574 00:32:12,880 --> 00:32:16,000 Speaker 3: think as big as we were thinking. The data just 575 00:32:16,160 --> 00:32:19,880 Speaker 3: wasn't there, And it really wasn't until the last few 576 00:32:20,000 --> 00:32:22,840 Speaker 3: years that it started to dawn on us that maybe 577 00:32:22,920 --> 00:32:26,960 Speaker 3: something truly was possible here. So ultimately, what we do 578 00:32:28,120 --> 00:32:32,080 Speaker 3: is we compile every kind of data that exists in 579 00:32:32,160 --> 00:32:36,680 Speaker 3: the world that might be able to link one biomedical 580 00:32:36,800 --> 00:32:40,840 Speaker 3: concept to another. So does a drug hit a target, 581 00:32:41,320 --> 00:32:44,760 Speaker 3: where is that target on this protein, what gene generates 582 00:32:44,840 --> 00:32:49,120 Speaker 3: that protein, what pathway does that protein sit in, what 583 00:32:49,520 --> 00:32:51,000 Speaker 3: cell type, what organ system. 584 00:32:51,920 --> 00:32:54,440 Speaker 2: Of course, the predictions are not going to be perfect, 585 00:32:54,520 --> 00:32:56,200 Speaker 2: and we're not going to say, oh, just because it's 586 00:32:56,280 --> 00:32:58,440 Speaker 2: number one on our list, it's going to work for everyone. 587 00:32:58,560 --> 00:33:00,760 Speaker 2: We still need to do clinical trials to validate it, 588 00:33:01,120 --> 00:33:03,920 Speaker 2: but the ability to focus in on all the possibilities 589 00:33:04,040 --> 00:33:06,320 Speaker 2: to the ones that look most promising is just something 590 00:33:06,360 --> 00:33:08,360 Speaker 2: that's never been possible before in human history. 591 00:33:09,280 --> 00:33:12,920 Speaker 1: Grant, what are you most proud of in terms of 592 00:33:13,080 --> 00:33:13,680 Speaker 1: every cure? 593 00:33:14,320 --> 00:33:16,680 Speaker 3: I think I'm most proud of the fact that we 594 00:33:16,880 --> 00:33:21,520 Speaker 3: have not let this go. And then I'm so proud 595 00:33:21,680 --> 00:33:26,000 Speaker 3: of the people that come and join our team. These 596 00:33:26,040 --> 00:33:28,480 Speaker 3: are some of the smartest people in the world that 597 00:33:28,600 --> 00:33:32,160 Speaker 3: could have higher paying jobs, that could be in Silicon 598 00:33:32,280 --> 00:33:37,080 Speaker 3: Valley doing other things, and they are compelled by this mission. 599 00:33:37,880 --> 00:33:42,000 Speaker 3: They're compelled by the ability to relieve suffering and save lives, 600 00:33:42,040 --> 00:33:47,200 Speaker 3: and they're compelled by the opportunity to create an engine 601 00:33:48,000 --> 00:33:51,920 Speaker 3: that should outlast us and will save lives in perpetuity, 602 00:33:52,040 --> 00:33:55,320 Speaker 3: whether we're working at every cure or not. In the future, 603 00:33:55,680 --> 00:33:58,680 Speaker 3: we want to create something that lasts in something that 604 00:33:58,760 --> 00:33:59,760 Speaker 3: has major impact. 605 00:34:00,440 --> 00:34:03,400 Speaker 2: Over fifteen drug where we've identified in or advanced a 606 00:34:03,480 --> 00:34:06,240 Speaker 2: repurpose drug for a disease they weren't intended for. And 607 00:34:06,480 --> 00:34:07,480 Speaker 2: I'm so proud of that. 608 00:34:08,880 --> 00:34:11,880 Speaker 1: Through the work at the CDCN and every cure over 609 00:34:11,960 --> 00:34:15,600 Speaker 1: the past ten years, David and Grant have tirelessly worked 610 00:34:15,640 --> 00:34:19,040 Speaker 1: to prevent others from enduring the suffering of orphan diseases. 611 00:34:19,800 --> 00:34:22,359 Speaker 1: David and Gary were both on the brink of death, 612 00:34:22,840 --> 00:34:25,919 Speaker 1: told there was nothing left to do, just to find 613 00:34:25,960 --> 00:34:30,000 Speaker 1: out that a medicine that already existed could be the cure. 614 00:34:30,560 --> 00:34:35,400 Speaker 1: Despite having every reason to give up, they persevered, Gary, 615 00:34:36,000 --> 00:34:38,080 Speaker 1: what do you want people to take away from your 616 00:34:38,160 --> 00:34:40,920 Speaker 1: experience and what got you through it? 617 00:34:41,680 --> 00:34:45,000 Speaker 4: Well, that's a toughye. So through the CDCN, I try 618 00:34:45,040 --> 00:34:47,359 Speaker 4: and act as an ambassador to other people who are 619 00:34:47,400 --> 00:34:50,640 Speaker 4: facing Castle and disease and just let them note that 620 00:34:50,760 --> 00:34:54,759 Speaker 4: they're not alone. It was right after my last round 621 00:34:54,800 --> 00:34:57,400 Speaker 4: of chemo and the second FLARE that I attended the 622 00:34:57,440 --> 00:35:00,879 Speaker 4: first Patient Loved One summit. I was in a room 623 00:35:00,960 --> 00:35:03,840 Speaker 4: full of sixty people who had Castle of disease or 624 00:35:04,120 --> 00:35:06,520 Speaker 4: who had a loved one who had Castle and disease. 625 00:35:07,320 --> 00:35:09,160 Speaker 4: And so when I talked about that sense of having 626 00:35:09,239 --> 00:35:12,720 Speaker 4: felt singled out and being punished, that was the polar opposite. 627 00:35:12,760 --> 00:35:15,120 Speaker 4: That was a huge turning point to be around other 628 00:35:15,200 --> 00:35:17,960 Speaker 4: people who they're describing things, and I'm like, yeah, I 629 00:35:18,120 --> 00:35:20,960 Speaker 4: get that. So that was a big thing for me 630 00:35:21,120 --> 00:35:25,560 Speaker 4: to really learn to enjoy connecting with people. And you 631 00:35:25,719 --> 00:35:29,400 Speaker 4: just have that sense of other people being with you. 632 00:35:30,040 --> 00:35:31,719 Speaker 4: You fight better when you have somebody by. 633 00:35:31,680 --> 00:35:39,440 Speaker 1: Your side, especially someone like doctor David Fagenbaum. I have 634 00:35:39,600 --> 00:35:41,160 Speaker 1: to tell you it is such a comfort to me 635 00:35:41,360 --> 00:35:44,799 Speaker 1: to know that people like you exist. And I am 636 00:35:44,880 --> 00:35:48,839 Speaker 1: deeply indebted to your mother, thank you, and to your father, 637 00:35:49,200 --> 00:35:54,920 Speaker 1: your sisters, to Caitlin, because anybody who has gotten you 638 00:35:55,040 --> 00:35:57,680 Speaker 1: through what you've gone through to make it possible for 639 00:35:57,760 --> 00:36:00,480 Speaker 1: me to be sitting and talking to you today honestly 640 00:36:00,560 --> 00:36:03,000 Speaker 1: in their debt and the world is too. I don't 641 00:36:03,080 --> 00:36:07,520 Speaker 1: say that lightly. What do you want people to take 642 00:36:07,560 --> 00:36:11,480 Speaker 1: away from your story, from your personal challenges? 643 00:36:12,400 --> 00:36:15,640 Speaker 2: I think the things that immediately come to mind are 644 00:36:15,800 --> 00:36:20,799 Speaker 2: that no matter how tough things get, no matter how 645 00:36:21,080 --> 00:36:24,680 Speaker 2: low the odds are, no matter how difficult things are, 646 00:36:25,440 --> 00:36:27,799 Speaker 2: I think just realizing that there may be a path 647 00:36:27,880 --> 00:36:30,239 Speaker 2: out of this. At the same time, I think it's 648 00:36:30,280 --> 00:36:35,440 Speaker 2: also important emphasize that the path out isn't necessarily going 649 00:36:35,520 --> 00:36:37,960 Speaker 2: to be delivered on your door, and that for me, 650 00:36:38,120 --> 00:36:40,719 Speaker 2: the reason I'm alive is not because I got really 651 00:36:40,840 --> 00:36:46,440 Speaker 2: lucky multiple times. It's because I had the right circumstances 652 00:36:46,520 --> 00:36:50,680 Speaker 2: around me, the amazing family, the amazing support, and I 653 00:36:50,760 --> 00:36:53,880 Speaker 2: started taking action. And that doesn't mean that anyone who's 654 00:36:54,080 --> 00:36:58,080 Speaker 2: dealing with illness or death needs to start experimenting on 655 00:36:58,120 --> 00:37:01,520 Speaker 2: their own blood samples or starting a grief organization. But 656 00:37:01,640 --> 00:37:05,320 Speaker 2: it does mean that you need to take action in 657 00:37:05,440 --> 00:37:07,920 Speaker 2: ways that makes sense for you. And so that might 658 00:37:08,000 --> 00:37:11,160 Speaker 2: be getting involved with the disease organization for the disease 659 00:37:11,200 --> 00:37:13,239 Speaker 2: that you have. It might be driving in your car 660 00:37:13,320 --> 00:37:15,640 Speaker 2: to the world's expert because, like you know, your local 661 00:37:15,719 --> 00:37:18,640 Speaker 2: doctor isn't doing what you need. I do think it 662 00:37:18,719 --> 00:37:19,239 Speaker 2: takes action. 663 00:37:21,920 --> 00:37:23,719 Speaker 1: If you'd like to find out more about the work 664 00:37:23,800 --> 00:37:25,719 Speaker 1: Grant and David and the rest of the team at 665 00:37:25,760 --> 00:37:30,279 Speaker 1: Every Cure Doing, visit Everycure dot org. They emphasize the 666 00:37:30,360 --> 00:37:33,960 Speaker 1: importance of raising awareness and donations as the best way 667 00:37:34,160 --> 00:37:35,840 Speaker 1: to support their ongoing efforts. 668 00:37:36,760 --> 00:37:40,759 Speaker 4: My name is Gary Gravina, I'm David Fagenbaum, and I 669 00:37:41,040 --> 00:37:43,680 Speaker 4: fought Casselman disease for nine months. 670 00:37:43,600 --> 00:37:46,799 Speaker 2: And after nearly dying five times in three years from 671 00:37:46,840 --> 00:37:48,800 Speaker 2: a deadly disease called Castleman. 672 00:37:48,360 --> 00:37:51,640 Speaker 4: Disease, David Fagenbaum and the CDCN came up with a 673 00:37:51,719 --> 00:37:54,840 Speaker 4: regimen that has held me in remission. I've now been 674 00:37:54,880 --> 00:37:58,319 Speaker 4: alive for over ten years, for almost eight years now. 675 00:37:58,360 --> 00:38:00,160 Speaker 2: Thanks to a drug that I discovered that I had 676 00:38:00,160 --> 00:38:03,040 Speaker 2: been sitting on my pharmacy shelf all along, and now 677 00:38:03,080 --> 00:38:04,839 Speaker 2: I'm on a mission to try to find as many 678 00:38:05,080 --> 00:38:07,319 Speaker 2: more uses of existing drugs as possible to save as 679 00:38:07,360 --> 00:38:08,360 Speaker 2: many lives as possible. 680 00:38:12,640 --> 00:38:16,160 Speaker 1: Next week on Symptomatic, we dive into the modern landscape 681 00:38:16,200 --> 00:38:20,960 Speaker 1: of prostate cancer and care. We'll explore emerging therapies, new research, 682 00:38:21,320 --> 00:38:24,040 Speaker 1: and some of the biggest hurdles faced by both patients 683 00:38:24,120 --> 00:38:28,120 Speaker 1: and healthcare professionals when trying to fight this deadly disease. 684 00:38:29,160 --> 00:38:32,520 Speaker 1: We're also excited to announce that Symptomatic will return for 685 00:38:32,640 --> 00:38:35,960 Speaker 1: a full season later this year. Thank you for trusting 686 00:38:36,080 --> 00:38:39,200 Speaker 1: us to share your stories. If you've experienced a mysterious 687 00:38:39,280 --> 00:38:42,279 Speaker 1: diagnostic journey or have a story of interest you want 688 00:38:42,320 --> 00:38:46,200 Speaker 1: to share, reach out to us at Symptomatic at iHeartMedia 689 00:38:46,320 --> 00:38:49,680 Speaker 1: dot com and keep an eye on your feed Until then, 690 00:38:50,080 --> 00:38:56,160 Speaker 1: Stay well. Symptomatic Medical Mystery Podcast is a production of 691 00:38:56,280 --> 00:38:59,880 Speaker 1: Ruby Studio from iHeartMedia. Our show is hosted by me 692 00:39:00,320 --> 00:39:04,640 Speaker 1: Lauren breg Pacheco. Executive producers are Matt Romano and myself. 693 00:39:05,280 --> 00:39:09,280 Speaker 1: Our EP of post production is James Foster. Our producers 694 00:39:09,320 --> 00:39:12,520 Speaker 1: are Sierra Kaiser and John Irwin. And this episode was 695 00:39:12,600 --> 00:39:14,200 Speaker 1: researched by Diana Davis