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Celina de Sola: I feel like you can hold hope and despair at the same time, right? 00:03
Like, it's OK to hold those things. 00:07
Because if you're trying to be hopeful, 00:09
you can't really always let go of the sadness 00:12
and the despair and the frustration. 00:15
So it's like, how do we hold those simultaneously 00:17
in a way that enables us to keep working 00:20
and keep learning and, you know, collaborating. 00:22
[Intersections] 00:26
[Presented by TED] 00:31
[David Fajgenbaum, Immunology researcher] 00:36
[Celina de Sola, Public health expert] 00:39
I'd love to hear about your work. 00:42
What are you working on? 00:45
What are you doing? 00:46
David Fajgenbaum: I’m on a mission to save and improve lives 00:47
with the drugs that we already have. 00:50
We use an AI platform to scan across the world's knowledge 00:51
of every drug and every disease 00:54
to find out new uses for the medicines that we already have. 00:56
CD: That’s amazing. 00:59
DF: And tell me about yourself. 01:00
CD: So actually we were founded in El Salvador, 01:01
an organization founded in El Salvador, 01:04
we're trying to create systems that are more trauma-informed 01:06
to make sure, especially in contexts of violence, 01:09
but to make sure so kids and families can navigate 01:11
the adversity they face and thrive, 01:14
right, instead of just, you know, 01:17
struggling with the impacts of stress and trauma on their lives. 01:19
And we work in public schools, too, 01:23
to make sure that those schools are safe spaces 01:25
where they can learn and receive the support they need. 01:28
DF: What is it about the system 01:31
that made you really want to tackle this problem? 01:33
CD: I think that we realized 01:36
that we didn't really see, that most people, 01:38
just society in general, but also teachers, nurses, doctors, 01:41
the systems we were working with didn't have an understanding 01:44
or the necessary understanding of the impacts of stress and trauma. 01:48
So we wanted to figure out how we could provide, 01:51
you know, that knowledge, those skills, 01:54
so everyone that children and young people and families 01:57
would interact with in these systems — 02:00
education, health, law enforcement — 02:02
would be able to do that, to provide, you know, 02:03
to provide a service that is more trauma-informed 02:06
and understands why people behave the way they do 02:08
and how we can change the way we interact. 02:12
DF: I was reading about your work. 02:15
You've had such an incredible impact. 02:17
It's just amazing. 02:19
CD: Likewise, I'd love to hear about you, 02:20
I read about your story, 02:22
and I'd love for you to tell me a little bit more about it in person. 02:23
DF: I went from being this healthy, third-year med student at Penn, 02:26
where I know we both were students, to becoming critically ill. 02:30
My organs started to shut down, 02:33
my liver, kidneys, bone marrow, heart, lungs. 02:34
And I went from being this totally healthy med student 02:36
to being critically ill. 02:39
Fifteen years ago was when I went into the hospital in the ICU 02:40
and nearly died five times over the course of a three-year period 02:43
from this horrible disease called Castleman disease 02:46
before eventually getting a diagnosis, 02:48
beginning to receive chemotherapy 02:52
and then discovering a drug that wasn't made for my disease 02:53
that could save my life. 02:56
A drug that was made for organ transplant rejection, 02:58
I thought could maybe treat my disease. 03:00
And I started testing it on myself. 03:02
And it's been 11.5 years that I've been in remission on this medicine. 03:04
I mean, the moment that this drug started saving my life, 03:07
all I've been able to think about is how many more drugs are out there 03:10
that are made for one disease that could actually save way more lives. 03:13
And that's just become my complete obsession. 03:17
And now we've got this nonprofit working on it. 03:19
CD: That's unbelievable. 03:21
But how did you think of seeing if one medicine could work 03:22
for something else? 03:25
Obviously, you have a medical background, but how did that actually happen? 03:26
What brought you to actually say, 03:30
"I know there's something out there"? 03:31
DF: Well, there's a couple of things. 03:34
One was that I'd been getting seven different chemotherapy drugs 03:36
with each of my relapses. 03:39
Every time I was in the ICU, they'd give me seven chemotherapies, 03:40
but they weren't made for my disease. 03:43
And I kept thinking, 03:45
everyone's telling me there's no drugs for Castleman's, 03:46
but you keep giving me chemotherapy and they don't work long-term, 03:49
but they're saving my life. 03:52
Maybe there's another drug made for another disease. 03:53
It was just that simple of a concept: these things work, 03:56
maybe there's something else that could work. 03:58
And the other was just the realization that I had no other option. 04:00
I didn't have a billion and 15 years to create a brand new drug. 04:04
If I wanted to survive, I would have to find something that existed. 04:07
So it was the constraints of the system. 04:10
And then what's been so crazy is how many drugs there are out there 04:12
that can help more people that we've been neglecting for so long. 04:15
CD: And so much funding has gone into developing those drugs, too. 04:18
It's like, you already have all this R and D, 04:21
what can you do to leverage that? 04:23
DF: And so let's think about how this relates back 04:25
to the work that you're doing. 04:28
We've got systems that are broken that you guys are working to address. 04:29
How do you try to leverage maybe what's already in place? 04:32
Or maybe you just try to start from scratch. 04:36
CD: You know, I think for us, I'm from El Salvador, 04:38
we were working in some of the countries that had the highest rates of violence 04:42
about 20 years ago when we started. 04:45
And before that, I did humanitarian aid. 04:47
So I worked mainly in countries affected by conflict and natural disasters. 04:49
And we were just seeing 04:53
that we weren't equipped, 04:56
our systems aren't equipped to deal with so many of these things 04:57
and mental health and well being, 05:00
which I think we understand a lot better now after the pandemic, 05:02
are so foundational for other outcomes. 05:05
You can't access learning, your physiological, 05:07
what we consider traditional physiological health, 05:09
weakens or worsens if you're not well emotionally. 05:13
So we were seeing that and we also understood 05:17
that the best way to address, we knew from science, 05:20
that the best way to address the impacts of stress and trauma in children 05:23
is a caring adult in their life. 05:29
DF: And maybe share about an individual that has really been touched by your work, 05:30
I'd love to hear a personal story. 05:34
CD: Oh, my gosh, there's so many. 05:37
But one of them comes to mind. 05:39
You know, when you work with young people, 05:40
most organizations that work with young people 05:42
don't necessarily work with law enforcement. 05:44
And when we were looking at what the ecosystem was 05:47
that we wanted to convert into something more trauma-informed, 05:49
we wanted to include law enforcement 05:53
because we knew young people interact with police 05:54
in, you know, sometimes great ways, sometimes not great ways, 05:57
in different ways. 06:01
So one police officer that we were working with, 06:02
she was explaining how difficult it is to take calls. 06:05
She was working in a really tough municipality, 06:08
high rates of homicide and crime. 06:10
And how it changes you to be exposed constantly to human suffering, 06:12
which I'm sure it does in medicine, too. 06:15
You're just exposed to human suffering. 06:17
How do you get through that, how it changes you. 06:19
So we started working after training a lot of officers, you know, 06:21
and she became a trainer and an interventionist. 06:26
She was explaining that now 06:28
not only was she better able to manage her own, 06:30
to self-regulate, to feel better and be well, 06:34
but she was able to provide that for her peers. 06:37
So it changed the way they interacted with communities. 06:39
And interestingly, right, when you talk to young people, she was afraid. 06:42
For example, "I don't know if I leave today 06:47
if I'm going to come back alive." 06:49
And a lot of young people would tell us the same thing in their community. 06:51
So it was identifying these opportunities. 06:54
And now, a few years later, 06:56
we've been able to work with national police in three countries, 06:58
and they're integrating mental health training 07:02
as part of their cadet training. 07:04
So we're really excited. 07:06
Tell me about you. 07:07
I know you've been working so much on systems 07:08
and I'm really excited to hear about it. 07:11
DF: As you said before, it's all about impact. 07:13
That's why we do what we do. 07:15
And for you, your impact is so broad-reaching 07:17
and also so deep within these individuals, within communities. 07:22
And for us similarly, we have a very bold and broad mission. 07:25
And that's to save and improve lives with the drugs we already have 07:30
by repurposing medicines. 07:33
We're called Every Cure, which is a big, broad remit. 07:34
But I'll share with you about one patient in particular, named Joseph. 07:39
And actually, he was at the TED Talk 07:43
that I gave just a few months ago 07:45
and was able to be there in the audience, 07:47
which was so special because I told his story during the talk. 07:49
And his story is that he was critically ill 07:51
with a horrible, rare cancer called POEMS syndrome, 07:54
and his doctors had tried everything the doctors knew to try 07:57
for this rare cancer. 08:00
And his girlfriend, Tara, reached out to my team on a Friday. 08:02
Joseph was getting ready 08:07
to be transferred to hospice care that Monday, 08:09
because nothing was working. 08:11
And I was able to get in touch with his doctor on that Saturday 08:12
and recommend three drugs that were made for multiple myeloma, 08:16
which is a cancer that's similar to POEMS syndrome, 08:20
but those drugs are not used for POEMS. 08:22
And the doctor and I had a long discussion 08:25
and there were a lot of debates 08:27
about whether he could tolerate these medicines 08:28
and whether we should sort of give this last Hail Mary effort. 08:31
And the doctor decided to try the medicines. 08:34
And amazingly, Joseph responded incredibly well. 08:36
By that Thursday, he was out of the ICU. 08:39
And now it's been over a year it's almost a year and a half now 08:42
he's been in remission. 08:45
These drugs were always there. 08:46
They were just made for a different disease, 08:47
a disease that actually is very similar to the disease that he has. 08:49
And it's just been so special to see patients like Joseph 08:53
get their lives back. 08:57
Joseph and Tara, a year and a half ago were planning Joseph's funeral. 08:58
Now they're planning their wedding together. 09:03
And, you know, this idea that the medicine was there, 09:05
but we humans hadn't done the work to match it together, 09:08
it's just what drives us. 09:12
We've got so many solutions out there, 09:13
and we've got to help patients with them. 09:15
CD: It's unbelievable. 09:17
We have the solutions there, right? 09:18
You have the medicines and the compounds there, 09:20
and we have the human resources that are already there. 09:22
It's like, how do we really capitalize on these resources 09:25
that are sometimes latent with regards to other things they can do? 09:28
But what do you do to stay optimistic? 09:32
What do you do with the setbacks when you have a patient 09:35
and you just can't find that cure? 09:38
And how do you manage that? 09:40
DF: Yeah, there are many cases 09:43
where we aren't able to find a repurposed drug for a patient 09:45
and they do pass away from their disease. 09:48
It's just so heartbreaking. 09:51
When you have a personal mission like the two of us have, 09:54
where that's all we can think about, and it's what drives us. 09:57
And certainly when I've gone through similar experiences 10:00
and to be on this other side, 10:03
it's heartbreaking when you're not able to find the solution. 10:05
It's also really motivating. 10:08
It just, you know, pushes us to work harder and harder. 10:10
And then there's patients like Joseph and others 10:13
that we've been able to help and save that motivates us even further. 10:16
It's the setbacks, 10:19
the cases where we're not able to help patients 10:20
and then also the [cases] where we are able to help patients, 10:23
it's really created a circuit. 10:25
And anytime I'm struggling, 10:27
you know, with the challenges of this nonprofit, of Every Cure 10:30
and the work that we do in research, 10:33
I just think about what these patients are going through, 10:35
what we're doing pales in comparison to the suffering 10:38
that they're going through. 10:40
And we're just trying to stay as motivated as we can to find solutions. 10:42
How do you get through these challenges and setbacks? 10:45
CD: I mean, it's hard, right? 10:48
I mean, I just got a text yesterday from someone, 10:49
a nurse at a clinic that we've been working in the schools -- 10:52
We work in public schools in different parts of the countries we work in. 10:55
And she called me and she was telling me about a girl who had survived violence 11:00
and she was pregnant four months. 11:04
It's just this horrible story 11:06
in a really tough situation. 11:08
And she was asking for intervention. 11:10
And there's the worry around teen suicide and just support. 11:12
And you hear these horrible stories and I agree with you. 11:17
It's like, how do we focus on the successes, right? 11:20
And then also in those successes, 11:23
how do we try to support other people around us 11:25
who are working on these same issues, you know, 11:28
whether they're in government or nonprofit. 11:30
And I think, you know, for me, 11:32
there are days where you're just exhausted 11:34
and you're like, oh, you feel like you're kind of running in place 11:36
and everything's so urgent. 11:40
I mean, you're saving lives, right? 11:41
We're trying to keep people, also like, trying to save lives, 11:43
trying to prevent the perpetuation of violence. 11:46
And I think -- I also draw inspiration from the successes 11:49
and from the people we work with, that determination. 11:53
And then one thing I've come to terms with in the last few years 11:57
is that I feel like you can hold hope and despair at the same time. 12:00
Like, it's OK to hold those things, 12:06
because if you're trying to be hopeful, 12:07
you can't really always let go of the the sadness 12:11
and the despair and the frustration. 12:14
So it's like, how do we hold those simultaneously 12:16
in a way that enables us to keep working 12:19
and keep learning and collaborating. 12:21
DF: What you're saying is almost like sitting with the pain, sometimes. 12:26
And I think that it's sitting with the pain, 12:29
sitting, in our cases, 12:33
with the loved ones of patients who didn't make it, 12:35
patients who are suffering. 12:38
It's, you know, understanding what the stakes are. 12:39
And then to your point, celebrating 12:42
and really leaning on the mentality 12:44
and the positive outlook of the cases where you're able to help 12:47
and it sounds like you're going through the same sort of thing. 12:50
How do you think about scale? 12:53
So obviously you started, you know, 12:55
hyper local and you've really grown in scale. 12:57
How have you thought about scaling the impact of your work? 13:00
CD: I mean, we started volunteering in schools, right? 13:03
Like, how can we be a caring adult for a kid, 13:05
almost 20 years ago, when we started Glasswing. 13:08
And I think we just, over time, 13:11
started hearing from the students and from the teachers, 13:12
aside from the work we were doing to meet basic needs, so to speak, 13:16
infrastructure, provide after-school programs, learning opportunities. 13:20
We just started seeing that there was this underlying issue 13:24
and we were seeing kind of the negative impacts 13:28
of the exposure to stress and trauma. 13:31
So I think for us, we've always worked within systems with this idea, 13:32
I guess the analogy for your sector 13:36
would be almost like R and D for systems, right? 13:38
So we're like, how can we learn from students, parents, teachers, 13:41
if we're working deeply and long-term in communities? 13:45
And that's what we've been doing. 13:48
So with mental health, 13:50
we knew that there was an opportunity to do non-clinical work 13:51
by doing this psychoeducation, trauma education. 13:54
And, you know, fast forward, 13:57
we were able to get the funding through Audacious, 13:58
we were able to get the resources. 14:01
And now what's really exciting is that because there's such a demand 14:03
and there's been such stigma around this, 14:06
which has improved during the pandemic, 14:10
but now there's a huge demand for it. 14:12
So the exciting thing is these systems, 14:14
they want this to be a part of what they do, 14:17
not just from a human resource standpoint 14:19
retention, performance, everything, quality of care, 14:21
but also it's become like a priority. 14:25
So now we're, you know, the curricula, 14:28
mental health training is being integrated into teachers colleges 14:30
that we're working with 14:34
or medical schools, nursing, child protection, judges. 14:35
So it's almost demand-driven, which is really exciting. 14:40
And then also making sure we're constantly learning and adapting 14:43
and responding and listening to those we work with 14:49
to make sure that we're really achieving this whole vision 14:52
of ecosystems and systems change. 14:55
But in our case, there's no doubt we have to work with public sector 14:57
to reach as many people as we can. 15:01
We also see them as a huge, frontline workers in particular, 15:02
as a huge resource. 15:05
DF: Wow, well, I see parallels in our work 15:07
in that, you know, it started very, 15:10
I guess I'd say hyperlocal with me in the sense that I was very sick 15:12
and found a drug that I repurposed for myself, 15:15
and then immediately, like you, started thinking, 15:18
OK, if this drug worked for me, 15:20
are there other drugs that could work for other patients? 15:22
And at first it was just Castleman's patients, 15:24
and then we started looking at diseases related to Castleman’s, 15:27
other rare diseases. 15:30
We've now repurposed 14 drugs for diseases they weren't intended for. 15:31
And now thousands of patients are alive because of these drugs 15:34
that weren't made for their disease. 15:37
But about three years ago, we decided to really scale things. 15:39
And that was with the creation of this nonprofit Every Cure. 15:42
And it really coincided with the emergence of artificial intelligence. 15:45
So, you know, 15:48
I run a lab at the University of Pennsylvania 15:50
and I'm very proud of our team, 15:54
we can study, you know, a couple drugs for a couple diseases a year 15:55
and make a lot of progress, and we were really proud of that. 15:59
But then when you think about what artificial intelligence can do 16:02
to scan across the world's knowledge of every drug and every disease -- 16:05
CD: Quickly. 16:09
DF: Almost instantly, right? 16:10
To come up with predictions on how likely drugs are to work in new diseases, 16:12
it's really mind boggling. 16:16
And just to sort of put some numbers around it, 16:17
when we built our first AI platform, 16:19
about two and a half years ago and ran it for the first time, 16:22
it took us 100 days to compute 75 million scores, 16:25
because there's 4,000 drugs and there's 18,000 diseases. 16:29
So if you tried every drug for every disease, 16:32
it would be 75 million possibilities. 16:34
It took 100 days. 16:36
Now it takes about 17 hours to compute the same 75 million scores. 16:37
The scores are really accurate, 16:41
they're telling us that drugs like lidocaine 16:43
can help potential patients with breast cancer. 16:45
Things that, you know, our brains would have never gone to immediately. 16:48
But what's so interesting also, 16:52
is that a lot of these insights are based on research 16:54
that we, humans, have already done. 16:58
You know, we've studied this drug in the lab for this disease, 16:59
and it maybe showed promise, 17:03
but then we moved on to that drug for that disease 17:04
because this wasn't a profitable opportunity. 17:06
Or maybe this was a better opportunity for someone's career. 17:09
And so there's all these breadcrumbs 17:11
that have been spread all over the medical research system. 17:13
And artificial intelligence is so good at picking up those breadcrumbs, 17:16
making the connections. 17:19
And then it's really up to us. 17:21
And like you, we won an Audacious Project award this past year. 17:22
And now it's up to us to leverage the power of artificial intelligence 17:26
to look across 75 million possibilities. 17:30
But then for us humans to say 17:32
this drug, for this disease really needs to be studied in the lab, 17:34
this one needs to be in clinical trials, 17:37
and this one we have to get to patients. 17:39
One of those diseases that I talked about in my TED Talk 17:41
that I shared in the spring, 17:44
it was a drug called leucovorin. 17:46
It was developed for patients on a form of chemotherapy decades ago, 17:48
and then used along with another form of chemotherapy decades ago. 17:53
Turns out that a fraction of children have antibodies 17:57
to prevent a vitamin from getting in their brain. 18:00
But if you give them this old drug 18:02
that was developed to be given to patients on chemotherapy, 18:04
it can help to get that vitamin folate into their brain. 18:07
And for a fraction of these kids, it can help them to speak, 18:10
improve their verbal communication skills. 18:13
And this sort of thing, where it's like, us humans, we made the connection, 18:15
brilliant work was done, but the last mile wasn't taken. 18:18
And that's because it's a cheap old drug, 18:21
and it's not that anyone wants to suppress the information, 18:23
it's just that no one's incentivized to get the word out. 18:26
There's no drug company behind this. 18:29
And so these are the kinds of systems problems that exist that you see, 18:30
and I see every day, 18:35
where it's like one little tweak here or there 18:36
can really unlock a lot of value and potential. 18:38
CD: So how did you transition from what you were doing, 18:40
the deep work, into the systems work 18:43
and what would you tell other people? 18:45
Like, what would you advise other people 18:47
who are trying to push forward there? 18:50
DF: I think if you observe a major problem, 18:52
like you did and like I did, 18:55
I think it's really important when you start to solve it, 18:57
to ask questions around what's already being done within the system. 18:59
Let's not try to reinvent the wheel, like you mentioned. 19:03
Let's see what already exists. 19:05
So I started asking more questions. 19:07
Physicians, researchers, pharmaceutical companies, government agencies, 19:08
you know, there must be someone working in our system 19:12
to try to find new uses for old medicines, 19:14
there's got to be some entity that's responsible for making sure 19:16
the drugs we have work for all the patients that can benefit. 19:20
And the more I looked, the more I learned that there wasn't this system. 19:22
Then I started trying to understand OK, what does exist? 19:26
And you know, what gaps can we fill in? 19:29
So I think the advice is really, get into the space, get going. 19:31
I think a lot of times people want to sort of do a lot of fact-finding 19:35
and a lot of learning, 19:39
"I wonder what's going on here." 19:40
Get into the space, start helping people, 19:41
start doing the work, start trying to fix the problem, 19:43
then start asking about the system. 19:46
But don't stop asking questions 19:48
until you figure out as much as you can about the system. 19:49
And then I think maybe I'd say the third piece of advice would be 19:52
to make sure that you've got an awesome team. 19:55
For me, I know a lot about drug repurposing 19:57
and a lot about immunology, and I can match drugs to diseases, 19:59
but I really don't have strengths in systems and policy. 20:02
And so I've got amazing colleagues who I can work with that can help us 20:06
to make these sort of changes. 20:09
CD: Yeah, I totally agree with you. 20:11
I think the team is key because we all have different skills, right? 20:13
Like, linear thinking, the more creative thinking. 20:16
And I think you’re right, it’s like, what does exist? 20:18
For us, that was always really important. 20:21
It was important for us to be a local organization. 20:23
Like, you know, founded and based in Latin America 20:26
and really making sure that we were listening. 20:28
I think what you said about asking questions 20:31
and I think asking beforehand, 20:33
but also continuing to ask, right, like, what else is there, 20:35
continuing to understand the systems we're working in 20:38
and their priorities. 20:41
Because I feel like if we can, even if we don’t necessarily align 20:42
with other things like politically or, you know, whatever it is, 20:45
I think we can align what we can align on. 20:50
And when we find those things that we can align on, 20:52
you can really drive change together. 20:55
And for us, working with public systems, there was no question. 20:58
We know we can never reach everybody. 21:01
And even though governments change, 21:04
that's the other thing that for us was important 21:05
when working with systems change. 21:08
It's not just working with government officials that are appointed 21:09
and in that administration, 21:13
it's working at the operational level 21:14
with people who are working every day, 21:16
whether, you know, teachers, administrators, 21:19
mid-level professionals, regional coordinators. 21:22
So really thinking about the people within government systems 21:25
that, you know, they outlive government changes 21:28
because they're working there. 21:31
And it's also they have this vocational drive, 21:32
like, they have this vocation to be there, 21:35
this desire to be in these systems. 21:37
So I think for us, it was important to make sure that we continue 21:39
to engage people who are part of these systems at all levels, 21:44
not just going from the community to the ministers, 21:48
but everywhere in between. 21:50
And thinking big, right? 21:52
Thinking big, but also maintaining that depth, 21:54
that depth of work with individuals, 21:57
with young people, communities. 22:00
Because you can do both. 22:02
You know, you can do both. 22:03
And I think if you don't really understand deeply what challenges are, 22:05
it's really hard to work on systems change and scale. 22:08
DF: That's great. 22:11
Yeah, I think about facing challenges. 22:12
I think that you need at least three things 22:14
to be able to overcome a big challenge. 22:17
I think what we're doing could certainly be described as big challenges. 22:19
One of them is, I think, you have to have a vision 22:22
for what you're working towards, 22:25
because when you're going through tough times, 22:26
if you don't know what you're fighting for, 22:28
you can't literally visualize it, 22:30
at least for me, I can't keep the fight going. 22:32
And I remember this back from when I was in the intensive care unit. 22:34
Literally, as I said, 22:37
today marks 15 years from when I was first hospitalized. 22:38
And I just remember that I thought so much 22:41
about, one day I'm going to be able to search for treatments 22:44
in memory of my mom, 22:47
one day I'm going to be able to maybe get married 22:48
to this amazing person that I was with, Caitlin. 22:50
But that vision, I think, is so important. 22:53
The second is the people by your side, 22:55
the team that you've got, 22:57
you've got to have an amazing team supporting you. 22:58
And for me, I was lucky when I was so sick 23:01
to have such great support around me. 23:03
And the third, I think, it's really this one step at a time 23:05
that grind that you were describing, 23:08
you know, meeting with these people and those people and doing this and that. 23:10
I think you have to take it one step at a time 23:14
because it's just too overwhelming. 23:16
If someone had gone to you on the first day you were volunteering 23:18
at the first school and said, we want you to create what you have now, 23:21
you'd have been like, no way. 23:24
Or at least I would have said it. 23:26
I can't do that, I can do this one thing, 23:27
but I can't do that other thing. 23:29
But I think taking those little tiny, bite-sized pieces, at least for me, 23:31
I think that helps me be able to do this sort of stuff. 23:34
CD: Yeah, because it's always overwhelming. 23:37
Those bite-sized, it's helpful, I think. 23:39
And you know, when you were talking about visualizing, 23:41
one of my favorite books is "Man's Search for Meaning" by Viktor Frankl. 23:43
And I remember in that book, he does a lot of visualizing, 23:47
and a lot of thinking about it. 23:50
And I think having hope sometimes or often or perhaps always 23:51
requires being able to envision, you know, 23:56
you sitting in this hospital room 23:59
and they told you they can't save you. 24:01
I can't imagine what that must have been like. 24:03
That must have been so heartbreaking, so young. 24:05
And why, right, all these things. 24:08
So I think that's a really good point. 24:09
And something that I think we always have to do in this sector. 24:12
To not fry, burn out. 24:16
DF: I'm so glad you mentioned hope. 24:19
Hope is, as you know, so powerful. 24:20
It's like you have to have hope to overcome any challenge. 24:24
And also, I found that in some contexts, 24:27
hope can be, almost, not helpful 24:30
in the sense that if you're overly hopeful, 24:34
you sort of assume someone else is going to solve it 24:36
and it sort of prevents you from taking action. 24:39
But the type of hope that you're talking about 24:41
and the type of hope that I love so much, is the hope that drives action. 24:43
It's because I can see what I'm hoping for, 24:47
because I want to help these young people in these communities like you do, 24:49
or in our case, patients with these diseases like we try to help, 24:52
that's going to drive action. 24:55
And when there's this hope in action circuit, 24:57
I find that you can get even more hopeful, 24:59
then do even more action 25:02
and then be more hopeful and drive even more change. 25:03
CD: 100 percent, as you were saying, the hope in action. 25:06
It's cyclical, right? 25:08
Because as you do it, you're like, OK. 25:10
And even if you have to take, like 12 steps back, you're like, OK, 25:12
back to the grind. 25:16
And I definitely have to draw on people around me a lot of times 25:18
for that hope and the energy to do it. 25:23
DF: What's your leadership philosophy, 25:27
for how you lead your teams and make change? 25:30
CD: Oh, my gosh. 25:33
I mean, I feel like 25:34
so much of leadership is about doing things together 25:36
and knowing when to get out of the way. 25:40
And I think -- 25:43
And asking for help. 25:45
I've always found it hard to ask for help generally, 25:46
and I think, 25:49
almost 20 years in to our organization, 25:51
it's just really asking for help ... 25:54
And just being OK with stepping back on a lot of things. 25:59
And I think that the other thing that's been really important 26:03
is to build a really diverse team 26:06
and understand, you know, what my weaknesses are, 26:08
what different people's strengths are 26:11
and find people that bring different skill sets, 26:14
different knowledge, different approaches, 26:20
different attitudes to the work to keep it dynamic and more -- 26:22
I think more productive. 26:27
DF: Yes, I love that. 26:29
CD: How about you, what do you think? 26:30
How big is your team? 26:32
DF: We've got about 50 people that are part of Every Cure, 26:33
and then about 20 people that are part of my lab at Penn. 26:36
And so for me, similar to what you mentioned, 26:39
I think one part of having a really effective team 26:42
is just assembling the right people to be a part of this, 26:46
effectively assembling mission-driven people 26:49
where, like, they are here to help patients. 26:51
That's why they're here. 26:54
They're not here for a paycheck, 26:56
they're here to help patients. 26:57
I think that's number one. 26:59
So recruiting is so important. 27:00
I think you put a lot of time into finding the right people. 27:01
And the second thing is really being able to set that vision 27:04
of what we're working towards, 27:07
and making sure just to constantly remind everyone of what that vision is: 27:09
“We recruited you to save and improve lives. 27:12
You are the best person in the world to help us do that. 27:14
You're the best person in the world to build our AI platform 27:17
to help us save and improve lives, but it’s always to save and improve lives.” 27:20
And I think visualizing, as we talked about earlier, is so important. 27:24
That's like literally showing patients that are here 27:27
because of a repurposed drug and also those who are waiting for a drug. 27:29
And I think that being able to really visualize, 27:33
it's so powerful for me 27:35
and I think it's helpful for our team. 27:36
And then I think the third thing is maybe obvious, 27:39
but I just think that over- communication is so important. 27:42
I think that anytime you're facing big challenges, 27:46
like you're facing and like we're facing, 27:49
there's so many cases where you could get misaligned on one thing or another, 27:51
but just keeping the conversation going, continue to communicate, 27:55
just being present with one another, 27:58
working together is so important. 28:00
And that's challenging for my group, 28:02
and I'm sure for yours as well, 28:04
because we are located in a number of different locations. 28:06
And so you aren't always able to, you know, bump into someone 28:09
you know, over lunch. 28:12
You have to really be intentional about communication. 28:14
CD: Yeah, I mean, we're working different countries, 28:17
different time zones, 28:19
and we have a really big team of people. 28:20
It is really hard, communication is hard. 28:22
And I think you’re right about maintaining that fluidity. 28:24
And I'd say not just with our teams, 28:28
I also think leadership is about 28:30
what interactions and partnerships we're developing, with who, 28:32
outside of the institution. 28:36
And I think also maintaining the humility as an organization, 28:37
especially when you're working with systems 28:40
to know that you're not within that system, 28:42
so you can't necessarily understand everything that they're going through. 28:45
So I think we've learned, as an organization and in our leadership, 28:49
whoever it is in the organization, 28:52
when we're working with people from other sectors, 28:54
particularly from government sector, 28:56
to maintain kind of that humility and curiosity about what it's -- 28:59
you know, maintain the humility and curiosity 29:04
about what it's like and what they need, 29:07
what their priorities are and what they're interested in. 29:09
DF: I love that you called out humility and curiosity 29:11
because I just think those are two ingredients 29:14
that you need in every single team 29:16
and every single problem that you're trying to solve. 29:18
Because if it was easy to solve, then someone else would have done it 29:21
and we wouldn't be working so hard. 29:25
So we've got to be humble because these are tough challenges. 29:26
Well, this has been so awesome. 29:29
I've so enjoyed spending this time with you. 29:31
CD: Congratulations on everything you're doing. 29:33

– English Lyrics

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[English]
Celina de Sola: I feel like you can hold hope and despair at the same time, right?
Like, it's OK to hold those things.
Because if you're trying to be hopeful,
you can't really always let go of the sadness
and the despair and the frustration.
So it's like, how do we hold those simultaneously
in a way that enables us to keep working
and keep learning and, you know, collaborating.
[Intersections]
[Presented by TED]
[David Fajgenbaum, Immunology researcher]
[Celina de Sola, Public health expert]
I'd love to hear about your work.
What are you working on?
What are you doing?
David Fajgenbaum: I’m on a mission to save and improve lives
with the drugs that we already have.
We use an AI platform to scan across the world's knowledge
of every drug and every disease
to find out new uses for the medicines that we already have.
CD: That’s amazing.
DF: And tell me about yourself.
CD: So actually we were founded in El Salvador,
an organization founded in El Salvador,
we're trying to create systems that are more trauma-informed
to make sure, especially in contexts of violence,
but to make sure so kids and families can navigate
the adversity they face and thrive,
right, instead of just, you know,
struggling with the impacts of stress and trauma on their lives.
And we work in public schools, too,
to make sure that those schools are safe spaces
where they can learn and receive the support they need.
DF: What is it about the system
that made you really want to tackle this problem?
CD: I think that we realized
that we didn't really see, that most people,
just society in general, but also teachers, nurses, doctors,
the systems we were working with didn't have an understanding
or the necessary understanding of the impacts of stress and trauma.
So we wanted to figure out how we could provide,
you know, that knowledge, those skills,
so everyone that children and young people and families
would interact with in these systems —
education, health, law enforcement —
would be able to do that, to provide, you know,
to provide a service that is more trauma-informed
and understands why people behave the way they do
and how we can change the way we interact.
DF: I was reading about your work.
You've had such an incredible impact.
It's just amazing.
CD: Likewise, I'd love to hear about you,
I read about your story,
and I'd love for you to tell me a little bit more about it in person.
DF: I went from being this healthy, third-year med student at Penn,
where I know we both were students, to becoming critically ill.
My organs started to shut down,
my liver, kidneys, bone marrow, heart, lungs.
And I went from being this totally healthy med student
to being critically ill.
Fifteen years ago was when I went into the hospital in the ICU
and nearly died five times over the course of a three-year period
from this horrible disease called Castleman disease
before eventually getting a diagnosis,
beginning to receive chemotherapy
and then discovering a drug that wasn't made for my disease
that could save my life.
A drug that was made for organ transplant rejection,
I thought could maybe treat my disease.
And I started testing it on myself.
And it's been 11.5 years that I've been in remission on this medicine.
I mean, the moment that this drug started saving my life,
all I've been able to think about is how many more drugs are out there
that are made for one disease that could actually save way more lives.
And that's just become my complete obsession.
And now we've got this nonprofit working on it.
CD: That's unbelievable.
But how did you think of seeing if one medicine could work
for something else?
Obviously, you have a medical background, but how did that actually happen?
What brought you to actually say,
"I know there's something out there"?
DF: Well, there's a couple of things.
One was that I'd been getting seven different chemotherapy drugs
with each of my relapses.
Every time I was in the ICU, they'd give me seven chemotherapies,
but they weren't made for my disease.
And I kept thinking,
everyone's telling me there's no drugs for Castleman's,
but you keep giving me chemotherapy and they don't work long-term,
but they're saving my life.
Maybe there's another drug made for another disease.
It was just that simple of a concept: these things work,
maybe there's something else that could work.
And the other was just the realization that I had no other option.
I didn't have a billion and 15 years to create a brand new drug.
If I wanted to survive, I would have to find something that existed.
So it was the constraints of the system.
And then what's been so crazy is how many drugs there are out there
that can help more people that we've been neglecting for so long.
CD: And so much funding has gone into developing those drugs, too.
It's like, you already have all this R and D,
what can you do to leverage that?
DF: And so let's think about how this relates back
to the work that you're doing.
We've got systems that are broken that you guys are working to address.
How do you try to leverage maybe what's already in place?
Or maybe you just try to start from scratch.
CD: You know, I think for us, I'm from El Salvador,
we were working in some of the countries that had the highest rates of violence
about 20 years ago when we started.
And before that, I did humanitarian aid.
So I worked mainly in countries affected by conflict and natural disasters.
And we were just seeing
that we weren't equipped,
our systems aren't equipped to deal with so many of these things
and mental health and well being,
which I think we understand a lot better now after the pandemic,
are so foundational for other outcomes.
You can't access learning, your physiological,
what we consider traditional physiological health,
weakens or worsens if you're not well emotionally.
So we were seeing that and we also understood
that the best way to address, we knew from science,
that the best way to address the impacts of stress and trauma in children
is a caring adult in their life.
DF: And maybe share about an individual that has really been touched by your work,
I'd love to hear a personal story.
CD: Oh, my gosh, there's so many.
But one of them comes to mind.
You know, when you work with young people,
most organizations that work with young people
don't necessarily work with law enforcement.
And when we were looking at what the ecosystem was
that we wanted to convert into something more trauma-informed,
we wanted to include law enforcement
because we knew young people interact with police
in, you know, sometimes great ways, sometimes not great ways,
in different ways.
So one police officer that we were working with,
she was explaining how difficult it is to take calls.
She was working in a really tough municipality,
high rates of homicide and crime.
And how it changes you to be exposed constantly to human suffering,
which I'm sure it does in medicine, too.
You're just exposed to human suffering.
How do you get through that, how it changes you.
So we started working after training a lot of officers, you know,
and she became a trainer and an interventionist.
She was explaining that now
not only was she better able to manage her own,
to self-regulate, to feel better and be well,
but she was able to provide that for her peers.
So it changed the way they interacted with communities.
And interestingly, right, when you talk to young people, she was afraid.
For example, "I don't know if I leave today
if I'm going to come back alive."
And a lot of young people would tell us the same thing in their community.
So it was identifying these opportunities.
And now, a few years later,
we've been able to work with national police in three countries,
and they're integrating mental health training
as part of their cadet training.
So we're really excited.
Tell me about you.
I know you've been working so much on systems
and I'm really excited to hear about it.
DF: As you said before, it's all about impact.
That's why we do what we do.
And for you, your impact is so broad-reaching
and also so deep within these individuals, within communities.
And for us similarly, we have a very bold and broad mission.
And that's to save and improve lives with the drugs we already have
by repurposing medicines.
We're called Every Cure, which is a big, broad remit.
But I'll share with you about one patient in particular, named Joseph.
And actually, he was at the TED Talk
that I gave just a few months ago
and was able to be there in the audience,
which was so special because I told his story during the talk.
And his story is that he was critically ill
with a horrible, rare cancer called POEMS syndrome,
and his doctors had tried everything the doctors knew to try
for this rare cancer.
And his girlfriend, Tara, reached out to my team on a Friday.
Joseph was getting ready
to be transferred to hospice care that Monday,
because nothing was working.
And I was able to get in touch with his doctor on that Saturday
and recommend three drugs that were made for multiple myeloma,
which is a cancer that's similar to POEMS syndrome,
but those drugs are not used for POEMS.
And the doctor and I had a long discussion
and there were a lot of debates
about whether he could tolerate these medicines
and whether we should sort of give this last Hail Mary effort.
And the doctor decided to try the medicines.
And amazingly, Joseph responded incredibly well.
By that Thursday, he was out of the ICU.
And now it's been over a year it's almost a year and a half now
he's been in remission.
These drugs were always there.
They were just made for a different disease,
a disease that actually is very similar to the disease that he has.
And it's just been so special to see patients like Joseph
get their lives back.
Joseph and Tara, a year and a half ago were planning Joseph's funeral.
Now they're planning their wedding together.
And, you know, this idea that the medicine was there,
but we humans hadn't done the work to match it together,
it's just what drives us.
We've got so many solutions out there,
and we've got to help patients with them.
CD: It's unbelievable.
We have the solutions there, right?
You have the medicines and the compounds there,
and we have the human resources that are already there.
It's like, how do we really capitalize on these resources
that are sometimes latent with regards to other things they can do?
But what do you do to stay optimistic?
What do you do with the setbacks when you have a patient
and you just can't find that cure?
And how do you manage that?
DF: Yeah, there are many cases
where we aren't able to find a repurposed drug for a patient
and they do pass away from their disease.
It's just so heartbreaking.
When you have a personal mission like the two of us have,
where that's all we can think about, and it's what drives us.
And certainly when I've gone through similar experiences
and to be on this other side,
it's heartbreaking when you're not able to find the solution.
It's also really motivating.
It just, you know, pushes us to work harder and harder.
And then there's patients like Joseph and others
that we've been able to help and save that motivates us even further.
It's the setbacks,
the cases where we're not able to help patients
and then also the [cases] where we are able to help patients,
it's really created a circuit.
And anytime I'm struggling,
you know, with the challenges of this nonprofit, of Every Cure
and the work that we do in research,
I just think about what these patients are going through,
what we're doing pales in comparison to the suffering
that they're going through.
And we're just trying to stay as motivated as we can to find solutions.
How do you get through these challenges and setbacks?
CD: I mean, it's hard, right?
I mean, I just got a text yesterday from someone,
a nurse at a clinic that we've been working in the schools --
We work in public schools in different parts of the countries we work in.
And she called me and she was telling me about a girl who had survived violence
and she was pregnant four months.
It's just this horrible story
in a really tough situation.
And she was asking for intervention.
And there's the worry around teen suicide and just support.
And you hear these horrible stories and I agree with you.
It's like, how do we focus on the successes, right?
And then also in those successes,
how do we try to support other people around us
who are working on these same issues, you know,
whether they're in government or nonprofit.
And I think, you know, for me,
there are days where you're just exhausted
and you're like, oh, you feel like you're kind of running in place
and everything's so urgent.
I mean, you're saving lives, right?
We're trying to keep people, also like, trying to save lives,
trying to prevent the perpetuation of violence.
And I think -- I also draw inspiration from the successes
and from the people we work with, that determination.
And then one thing I've come to terms with in the last few years
is that I feel like you can hold hope and despair at the same time.
Like, it's OK to hold those things,
because if you're trying to be hopeful,
you can't really always let go of the the sadness
and the despair and the frustration.
So it's like, how do we hold those simultaneously
in a way that enables us to keep working
and keep learning and collaborating.
DF: What you're saying is almost like sitting with the pain, sometimes.
And I think that it's sitting with the pain,
sitting, in our cases,
with the loved ones of patients who didn't make it,
patients who are suffering.
It's, you know, understanding what the stakes are.
And then to your point, celebrating
and really leaning on the mentality
and the positive outlook of the cases where you're able to help
and it sounds like you're going through the same sort of thing.
How do you think about scale?
So obviously you started, you know,
hyper local and you've really grown in scale.
How have you thought about scaling the impact of your work?
CD: I mean, we started volunteering in schools, right?
Like, how can we be a caring adult for a kid,
almost 20 years ago, when we started Glasswing.
And I think we just, over time,
started hearing from the students and from the teachers,
aside from the work we were doing to meet basic needs, so to speak,
infrastructure, provide after-school programs, learning opportunities.
We just started seeing that there was this underlying issue
and we were seeing kind of the negative impacts
of the exposure to stress and trauma.
So I think for us, we've always worked within systems with this idea,
I guess the analogy for your sector
would be almost like R and D for systems, right?
So we're like, how can we learn from students, parents, teachers,
if we're working deeply and long-term in communities?
And that's what we've been doing.
So with mental health,
we knew that there was an opportunity to do non-clinical work
by doing this psychoeducation, trauma education.
And, you know, fast forward,
we were able to get the funding through Audacious,
we were able to get the resources.
And now what's really exciting is that because there's such a demand
and there's been such stigma around this,
which has improved during the pandemic,
but now there's a huge demand for it.
So the exciting thing is these systems,
they want this to be a part of what they do,
not just from a human resource standpoint
retention, performance, everything, quality of care,
but also it's become like a priority.
So now we're, you know, the curricula,
mental health training is being integrated into teachers colleges
that we're working with
or medical schools, nursing, child protection, judges.
So it's almost demand-driven, which is really exciting.
And then also making sure we're constantly learning and adapting
and responding and listening to those we work with
to make sure that we're really achieving this whole vision
of ecosystems and systems change.
But in our case, there's no doubt we have to work with public sector
to reach as many people as we can.
We also see them as a huge, frontline workers in particular,
as a huge resource.
DF: Wow, well, I see parallels in our work
in that, you know, it started very,
I guess I'd say hyperlocal with me in the sense that I was very sick
and found a drug that I repurposed for myself,
and then immediately, like you, started thinking,
OK, if this drug worked for me,
are there other drugs that could work for other patients?
And at first it was just Castleman's patients,
and then we started looking at diseases related to Castleman’s,
other rare diseases.
We've now repurposed 14 drugs for diseases they weren't intended for.
And now thousands of patients are alive because of these drugs
that weren't made for their disease.
But about three years ago, we decided to really scale things.
And that was with the creation of this nonprofit Every Cure.
And it really coincided with the emergence of artificial intelligence.
So, you know,
I run a lab at the University of Pennsylvania
and I'm very proud of our team,
we can study, you know, a couple drugs for a couple diseases a year
and make a lot of progress, and we were really proud of that.
But then when you think about what artificial intelligence can do
to scan across the world's knowledge of every drug and every disease --
CD: Quickly.
DF: Almost instantly, right?
To come up with predictions on how likely drugs are to work in new diseases,
it's really mind boggling.
And just to sort of put some numbers around it,
when we built our first AI platform,
about two and a half years ago and ran it for the first time,
it took us 100 days to compute 75 million scores,
because there's 4,000 drugs and there's 18,000 diseases.
So if you tried every drug for every disease,
it would be 75 million possibilities.
It took 100 days.
Now it takes about 17 hours to compute the same 75 million scores.
The scores are really accurate,
they're telling us that drugs like lidocaine
can help potential patients with breast cancer.
Things that, you know, our brains would have never gone to immediately.
But what's so interesting also,
is that a lot of these insights are based on research
that we, humans, have already done.
You know, we've studied this drug in the lab for this disease,
and it maybe showed promise,
but then we moved on to that drug for that disease
because this wasn't a profitable opportunity.
Or maybe this was a better opportunity for someone's career.
And so there's all these breadcrumbs
that have been spread all over the medical research system.
And artificial intelligence is so good at picking up those breadcrumbs,
making the connections.
And then it's really up to us.
And like you, we won an Audacious Project award this past year.
And now it's up to us to leverage the power of artificial intelligence
to look across 75 million possibilities.
But then for us humans to say
this drug, for this disease really needs to be studied in the lab,
this one needs to be in clinical trials,
and this one we have to get to patients.
One of those diseases that I talked about in my TED Talk
that I shared in the spring,
it was a drug called leucovorin.
It was developed for patients on a form of chemotherapy decades ago,
and then used along with another form of chemotherapy decades ago.
Turns out that a fraction of children have antibodies
to prevent a vitamin from getting in their brain.
But if you give them this old drug
that was developed to be given to patients on chemotherapy,
it can help to get that vitamin folate into their brain.
And for a fraction of these kids, it can help them to speak,
improve their verbal communication skills.
And this sort of thing, where it's like, us humans, we made the connection,
brilliant work was done, but the last mile wasn't taken.
And that's because it's a cheap old drug,
and it's not that anyone wants to suppress the information,
it's just that no one's incentivized to get the word out.
There's no drug company behind this.
And so these are the kinds of systems problems that exist that you see,
and I see every day,
where it's like one little tweak here or there
can really unlock a lot of value and potential.
CD: So how did you transition from what you were doing,
the deep work, into the systems work
and what would you tell other people?
Like, what would you advise other people
who are trying to push forward there?
DF: I think if you observe a major problem,
like you did and like I did,
I think it's really important when you start to solve it,
to ask questions around what's already being done within the system.
Let's not try to reinvent the wheel, like you mentioned.
Let's see what already exists.
So I started asking more questions.
Physicians, researchers, pharmaceutical companies, government agencies,
you know, there must be someone working in our system
to try to find new uses for old medicines,
there's got to be some entity that's responsible for making sure
the drugs we have work for all the patients that can benefit.
And the more I looked, the more I learned that there wasn't this system.
Then I started trying to understand OK, what does exist?
And you know, what gaps can we fill in?
So I think the advice is really, get into the space, get going.
I think a lot of times people want to sort of do a lot of fact-finding
and a lot of learning,
"I wonder what's going on here."
Get into the space, start helping people,
start doing the work, start trying to fix the problem,
then start asking about the system.
But don't stop asking questions
until you figure out as much as you can about the system.
And then I think maybe I'd say the third piece of advice would be
to make sure that you've got an awesome team.
For me, I know a lot about drug repurposing
and a lot about immunology, and I can match drugs to diseases,
but I really don't have strengths in systems and policy.
And so I've got amazing colleagues who I can work with that can help us
to make these sort of changes.
CD: Yeah, I totally agree with you.
I think the team is key because we all have different skills, right?
Like, linear thinking, the more creative thinking.
And I think you’re right, it’s like, what does exist?
For us, that was always really important.
It was important for us to be a local organization.
Like, you know, founded and based in Latin America
and really making sure that we were listening.
I think what you said about asking questions
and I think asking beforehand,
but also continuing to ask, right, like, what else is there,
continuing to understand the systems we're working in
and their priorities.
Because I feel like if we can, even if we don’t necessarily align
with other things like politically or, you know, whatever it is,
I think we can align what we can align on.
And when we find those things that we can align on,
you can really drive change together.
And for us, working with public systems, there was no question.
We know we can never reach everybody.
And even though governments change,
that's the other thing that for us was important
when working with systems change.
It's not just working with government officials that are appointed
and in that administration,
it's working at the operational level
with people who are working every day,
whether, you know, teachers, administrators,
mid-level professionals, regional coordinators.
So really thinking about the people within government systems
that, you know, they outlive government changes
because they're working there.
And it's also they have this vocational drive,
like, they have this vocation to be there,
this desire to be in these systems.
So I think for us, it was important to make sure that we continue
to engage people who are part of these systems at all levels,
not just going from the community to the ministers,
but everywhere in between.
And thinking big, right?
Thinking big, but also maintaining that depth,
that depth of work with individuals,
with young people, communities.
Because you can do both.
You know, you can do both.
And I think if you don't really understand deeply what challenges are,
it's really hard to work on systems change and scale.
DF: That's great.
Yeah, I think about facing challenges.
I think that you need at least three things
to be able to overcome a big challenge.
I think what we're doing could certainly be described as big challenges.
One of them is, I think, you have to have a vision
for what you're working towards,
because when you're going through tough times,
if you don't know what you're fighting for,
you can't literally visualize it,
at least for me, I can't keep the fight going.
And I remember this back from when I was in the intensive care unit.
Literally, as I said,
today marks 15 years from when I was first hospitalized.
And I just remember that I thought so much
about, one day I'm going to be able to search for treatments
in memory of my mom,
one day I'm going to be able to maybe get married
to this amazing person that I was with, Caitlin.
But that vision, I think, is so important.
The second is the people by your side,
the team that you've got,
you've got to have an amazing team supporting you.
And for me, I was lucky when I was so sick
to have such great support around me.
And the third, I think, it's really this one step at a time
that grind that you were describing,
you know, meeting with these people and those people and doing this and that.
I think you have to take it one step at a time
because it's just too overwhelming.
If someone had gone to you on the first day you were volunteering
at the first school and said, we want you to create what you have now,
you'd have been like, no way.
Or at least I would have said it.
I can't do that, I can do this one thing,
but I can't do that other thing.
But I think taking those little tiny, bite-sized pieces, at least for me,
I think that helps me be able to do this sort of stuff.
CD: Yeah, because it's always overwhelming.
Those bite-sized, it's helpful, I think.
And you know, when you were talking about visualizing,
one of my favorite books is "Man's Search for Meaning" by Viktor Frankl.
And I remember in that book, he does a lot of visualizing,
and a lot of thinking about it.
And I think having hope sometimes or often or perhaps always
requires being able to envision, you know,
you sitting in this hospital room
and they told you they can't save you.
I can't imagine what that must have been like.
That must have been so heartbreaking, so young.
And why, right, all these things.
So I think that's a really good point.
And something that I think we always have to do in this sector.
To not fry, burn out.
DF: I'm so glad you mentioned hope.
Hope is, as you know, so powerful.
It's like you have to have hope to overcome any challenge.
And also, I found that in some contexts,
hope can be, almost, not helpful
in the sense that if you're overly hopeful,
you sort of assume someone else is going to solve it
and it sort of prevents you from taking action.
But the type of hope that you're talking about
and the type of hope that I love so much, is the hope that drives action.
It's because I can see what I'm hoping for,
because I want to help these young people in these communities like you do,
or in our case, patients with these diseases like we try to help,
that's going to drive action.
And when there's this hope in action circuit,
I find that you can get even more hopeful,
then do even more action
and then be more hopeful and drive even more change.
CD: 100 percent, as you were saying, the hope in action.
It's cyclical, right?
Because as you do it, you're like, OK.
And even if you have to take, like 12 steps back, you're like, OK,
back to the grind.
And I definitely have to draw on people around me a lot of times
for that hope and the energy to do it.
DF: What's your leadership philosophy,
for how you lead your teams and make change?
CD: Oh, my gosh.
I mean, I feel like
so much of leadership is about doing things together
and knowing when to get out of the way.
And I think --
And asking for help.
I've always found it hard to ask for help generally,
and I think,
almost 20 years in to our organization,
it's just really asking for help ...
And just being OK with stepping back on a lot of things.
And I think that the other thing that's been really important
is to build a really diverse team
and understand, you know, what my weaknesses are,
what different people's strengths are
and find people that bring different skill sets,
different knowledge, different approaches,
different attitudes to the work to keep it dynamic and more --
I think more productive.
DF: Yes, I love that.
CD: How about you, what do you think?
How big is your team?
DF: We've got about 50 people that are part of Every Cure,
and then about 20 people that are part of my lab at Penn.
And so for me, similar to what you mentioned,
I think one part of having a really effective team
is just assembling the right people to be a part of this,
effectively assembling mission-driven people
where, like, they are here to help patients.
That's why they're here.
They're not here for a paycheck,
they're here to help patients.
I think that's number one.
So recruiting is so important.
I think you put a lot of time into finding the right people.
And the second thing is really being able to set that vision
of what we're working towards,
and making sure just to constantly remind everyone of what that vision is:
“We recruited you to save and improve lives.
You are the best person in the world to help us do that.
You're the best person in the world to build our AI platform
to help us save and improve lives, but it’s always to save and improve lives.”
And I think visualizing, as we talked about earlier, is so important.
That's like literally showing patients that are here
because of a repurposed drug and also those who are waiting for a drug.
And I think that being able to really visualize,
it's so powerful for me
and I think it's helpful for our team.
And then I think the third thing is maybe obvious,
but I just think that over- communication is so important.
I think that anytime you're facing big challenges,
like you're facing and like we're facing,
there's so many cases where you could get misaligned on one thing or another,
but just keeping the conversation going, continue to communicate,
just being present with one another,
working together is so important.
And that's challenging for my group,
and I'm sure for yours as well,
because we are located in a number of different locations.
And so you aren't always able to, you know, bump into someone
you know, over lunch.
You have to really be intentional about communication.
CD: Yeah, I mean, we're working different countries,
different time zones,
and we have a really big team of people.
It is really hard, communication is hard.
And I think you’re right about maintaining that fluidity.
And I'd say not just with our teams,
I also think leadership is about
what interactions and partnerships we're developing, with who,
outside of the institution.
And I think also maintaining the humility as an organization,
especially when you're working with systems
to know that you're not within that system,
so you can't necessarily understand everything that they're going through.
So I think we've learned, as an organization and in our leadership,
whoever it is in the organization,
when we're working with people from other sectors,
particularly from government sector,
to maintain kind of that humility and curiosity about what it's --
you know, maintain the humility and curiosity
about what it's like and what they need,
what their priorities are and what they're interested in.
DF: I love that you called out humility and curiosity
because I just think those are two ingredients
that you need in every single team
and every single problem that you're trying to solve.
Because if it was easy to solve, then someone else would have done it
and we wouldn't be working so hard.
So we've got to be humble because these are tough challenges.
Well, this has been so awesome.
I've so enjoyed spending this time with you.
CD: Congratulations on everything you're doing.

Key Vocabulary

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Vocabulary Meanings

feel

/fiːl/

A1
  • verb
  • - to experience an emotion or sensation

hold

/hoʊld/

A1
  • verb
  • - to keep or have something in your hand
  • verb
  • - to contain or have something

time

/taɪm/

A1
  • noun
  • - the measured or measurable period during which an action, process, or condition exists or continues; duration.

work

/wɜːrk/

A1
  • noun
  • - activity involving mental or physical effort done in order to achieve a purpose or result.
  • verb
  • - to be employed or engaged in a job or occupation.

hope

/hoʊp/

A2
  • noun
  • - a feeling of expectation and desire for a certain thing to happen.
  • verb
  • - to want something to happen or be the case.

despair

/dɪˈspeər/

B1
  • noun
  • - the complete loss or absence of hope.
  • verb
  • - lose or be without hope.

sadness

/ˈsædnəs/

A2
  • noun
  • - the quality or state of being sad.

frustration

/frʌˈstreɪʃən/

B1
  • noun
  • - the feeling of being upset or annoyed, especially because of inability to change or achieve something.

learning

/ˈlɜːrnɪŋ/

A2
  • noun
  • - the acquisition of knowledge or skills through experience, study, or by being taught.

violence

/ˈvaɪələns/

B1
  • noun
  • - behavior involving physical force intended to hurt, damage, or kill someone or something.

impact

/ˈɪmpækt/

B1
  • noun
  • - the action of one object coming forcibly into contact with another.
  • verb
  • - have a significant effect on someone or something.

system

/ˈsɪstəm/

B1
  • noun
  • - a set of things working together as parts of a mechanism or an interconnecting network.

people

/ˈpiːpəl/

A1
  • noun
  • - human beings in general or considered collectively.

disease

/dɪˈziːz/

B1
  • noun
  • - a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

life

/laɪf/

A1
  • noun
  • - the condition that distinguishes animals and plants from inorganic matter, including the capacity for growth, reproduction, functional activity, and continual change preceding death.

medicine

/ˈmedɪsɪn/

A2
  • noun
  • - a substance used for treating disease or relieving pain.

success

/səkˈses/

B1
  • noun
  • - the accomplishment of an aim or purpose.

challenge

/ˈtʃælɪndʒ/

B1
  • noun
  • - a call to someone to participate in a competitive situation or do something difficult.
  • verb
  • - to invite (someone) to take part in a competition or contest.

vision

/ˈvɪʒən/

B2
  • noun
  • - the faculty or power of seeing.

team

/tiːm/

A2
  • noun
  • - a group of people working together.

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