Projects
![]()
No projects found
Investors
New
DAO Treasuries
DATs
Lend / Borrow APRs
Chains
Categories
Spaces
In the Lab #5: The Path to $Cures with Curetopia
Recorded: Jan. 24, 2025 Duration: 1:02:39Space Recording
Full Transcription
Thank you. Hey Aaron, happy Friday.
Hello, hello, happy Friday.
Welcome back to the decent mic in the lab.
Super pumped to be here this week with Ethan and Dive into Cure Tokyo.
Heck yeah.
And also
hope you're having a good week
and always
love kind of getting into Convo
gradually as
people filter in. And hey,
Ethan, happy Friday, man. I am
so stoked to be talking to you today, sir.
Hello.
Good to see you guys
those that what was your week like my friend anything cool going on just
prepping for the cures auction just trying to time the crypto markets but
yeah hopefully we're gonna be launching onana. It's the first Solana native biodow,
but I'll have the final timeline to auction launch formalized sometime next week, I hope.
So stay tuned.
Oh, man.
Well, it's so exciting, and I'm so excited to share with all our listeners and the community what a great opportunity it is to get involved in the
you know on the on the ground floor of uh i think a really important community so um man we're gonna
have a lot to talk about today and um uh aaron i'll let you kind of uh uh guide us through our
our convo but i i actually did have just kind of a high levellevel curiosity because Ethan I think of you is almost like a pre decide decide leader and and so I'm a little curious
to like how did you start to hear about you know this form this movement and
it's kind of current form and what was sort of your journey to being a part of
the decide space yeah let's see I mean must have been 20 ish i guess it was that whenever uh chris dixon started talking about
read write own and like when web3 started to be on the tip of everyone's tongue um that's when i
first started to think about uh just putting the words decentralized and biotech together
and just never had i guess guess, done that before.
And I'd been in crypto for a while, but, you know, crypto meaning Bitcoin and really just Bitcoin.
And never, you know, to this day, I've not, you know, purchased an NFT or anything like that directly.
uh but in when when people started uh talking about just web 3 all the time i just couldn't
help but juxtapose it with biotech and try to understand is there something there there and then
the first thought that came to me was like decentralized biotech dbi and i thought oh
yeah that rhymes with defy and you know there's trad side there's trad bio like there's you know
there's this nice analogy and that's TradBio. There's this nice analogy. And that's how I
started to get comfortable with the idea. And then at some point, somebody tweeted out DeFi.
And I was like, damn, I wish I had thought of that instead of DeFi. And then I realized that
DeFi meant two different... I said De i said decentralized biotech for a reason because
other people were upset with um with trad psi which is what their word was for academia
and then you know that's a whole separate set of complaints and so i thought desai was like you
know desai was the trad side which was more i thought initially was like going to be an academic
inflection but then desai just seemed to take over the meme or at least won the meme wars.
So yeah, so I guess I started to get behind that message of Desai.
And then over the past few years, it was a winter, crypto winter,
and saw various projects like VitaDAO, AthenaDAO,
and noticed that this is when the real building
gets done.
And then last year, Paul from Bio reached out, invited me to speak at the DSi Berlin
conference.
And I hadn't even heard about the DSi Berlin 23 or whatever was happening in DSi 23.
I was not attending anything because it didn't feel
um just didn't feel ready for me and then speaking at that conference in berlin and meeting all the
amazing people there and feeling that i was you know walking into this this ground floor of
something really expansive and it wasn't just like 10 randos and it wasn't all just 10 dudes um it was you know
decent mix of people and artists and and others so it felt like this is it this is like when
dside's gonna rip and and then that was last may and of course crypto markets didn't cooperate
but then right around the end of the year that you know um so we i've been cooking up kirtopia
since since coming back from Berlin,
but we were just talking with Paul and James about the timing of things.
And then obviously we realized we've been going to launch at the end of the
year or, or head toward the beginning of the year. And, um,
that's kind of where we are today. And that's, I guess, how I got into,
I guess how I got into Desai.
into D side long answer. Sorry.
Long answer, sorry.
Oh, I love it.
Thank you so much for giving me such a full answer
because as someone who really does believe
that we're doing something special here,
Ethan, I really think of you as the type of leader
Desai is here to help accelerate, man.
So I'm so happy that it seemed like a good
fit and that we're kind of right in the middle of that story. And Erin, pretty cool, right? I mean,
also just kind of the role that the events circuit plays for Desai, right? Like, I know you're sort of
a big hyper connector in that area, right? Yeah, I think one of the benefits of D-Sign, just kind of some of these
decentralized movements overall, is being able to have these in-person touch points to start some
of those connections or accelerate some of those beginnings and connections, and then being able to
continue operating all around the world in each of our own domains or different areas and being able to progress things forward.
So the IRL to URL connection is super needed and trying to bridge those gaps with spaces like this.
I have to say the conversations in these spaces are so special.
And I think, yeah, DSI is so special because through these different kind of things we're
talking about, I think it really does become hopefully possible to do things in a very
different way. And I actually am so curious to maybe get your reaction to the following statement, Ethan.
Rare disease communities have kind of always had to do things in like a pretty
different way. Haven't they?
Yeah. I mean, if you're like a, I mostly get the parent, you know,
experience, obviously there's rare disease patients who are adults and
advocating for themselves. But, you know experience obviously there's rare disease patients who are adults and advocating for themselves but you know if you're a parent and you get a you know a genetic lightning bolt
comes out of the blue and you get this diagnosis and the doctor tells you a you know string of
letters and numbers and you're in a daze um you probably don't remember much about dna and rna
from high school biology and then you're're this parent sitting there that night of the diagnosis and, you know,
your world has just collapsed around you.
And then you're like, shit, I have to do everything.
Because the medical establishment might say things like, well, there's no approved treatment
here or this is terminal or this is this or that.
Or basically, they'll say, go enjoy the time you have, go make good memories. So that's kind of like,
you know, what the establishment tells you to do. And then some people just take it. But the people
I end up working with, and I've met over the years, just refused that, that, that prescription.
And they're from that first night, they're like, you know, on PubMed, Google, whatever, now
it's ChatGT, and they're putting the name of the gene, they're figuring out who the
researchers are, they're figuring out, you know, who other families are that are affected,
they're doing fundraising, then they're learning the science and having to keep up, they're
doing all these things that no one in the system is like helping
them. And the system was never designed for them. So they're kind of doing everything on their own.
So yeah, so crypto is just another experiment and something else new to try from that point of view.
But yeah, you know, crypto and rare, there's a lot of analogies, I think, between the way these communities are formed and kind of what guides them and what things they have to do to kind of survive and adapt in a world that's not helpful or hospitable.
of what I was hoping you were going to say, because I, that's what I sort of get the feeling
sometimes that the rare disease community is incredibly decentralized. And I think the
Desai space more broadly might have a lot to learn, you know, from how they've been able to
organize effectively. And, you know, I always make that joke too. You meet someone in the rare
disease community and you're like, oh, do you have a PhD or are you just a patient?
Right. Because it really is amazing the kind of learning that a lot of these families and communities have supportive, been able to. Yeah. I mean, that was that that was the light bulb
moment was like in 2013. I kind of left academia. There was, you know, I had a blog post post
apocalypse now. Nothing's fucking changed. um so whatever we can get on academia and
talk about academia and the d sci with you know another another another later but basically i'm
at this rare disease day conference and i'm just roaming the hallway and i bump into this this woman
and she starts talking to me about neiman pick type c disease and about cholesterol trafficking
and that was something that i happened to study in my postdoc and was interested in from a cell biology point of view
and never thought about that the cell biology had implications for human beings. I was in academia.
I didn't have to care about those sort of things. And I just was fascinated by the biology. Now,
here I meet this person and it turns out she's the mom of twins, identical twins who have Neiman pick type C.
Unfortunately, they went on to pass away, but I met her when her daughters were young. And, um,
and this mom was just talking to me about cholesterol trafficking. And I was just like
thinking to myself, how do you know all this shit? Um, I'm like, did you get a PG or something?
You're like, no, like I just had to read. And I'm like, and she's like, yeah, I was an early employee at Netscape.
And so was my husband.
So they were already kind of tech people.
And they were already kind of entrepreneurs and willing to just give the finger to the establishment when they were told they couldn't do something.
And they ended up, this family is called the Hempels.
And they ended up actually being one of the first pioneers in repurposing.
They actually found that the active ingredient in Febreze, cyclodextrin, they found that
cyclodextrin, and like Chris told me, Chris Hempel told me a story.
She reached out to this researcher, Benny Lowe, and he was coming from the Brown and
Goldstein lab, which is a big, big cholesterol lab.
And she was connecting the dots.
And she's like, you know, there's too much cholesterol neiman pixie you know cyclodextrin
absorbs cholesterol maybe if you put them together it will suck up the extra cholesterol
and this was like she put all this together and then eventually got chris austin who at the time
was running ncats and they were rallying behind this and um yeah and their daughter started taking
cyclodextrin and many others did and it didn't
get approved as a drug the phase three student work for many different reasons um but like it
all started because this this mom who was head of marketing you know at netscape was like no i'm not
going to listen to the doctors i'm not going to listen to the system and then when i just kind of
met her and it all dawned on me that she's not alone, that there's going to be other parents that do exactly this. Some of them will do it to even greater extremes and be even
more just amazing people. And you're like, how the hell did this parent do this? And they still
have to take care of the kid. They still have to take care of an unaffected kid, maybe. They still
have a marriage sometimes, usually, if it survives. They're doing all of this shit.
It's amazing.
So yeah, the life moment for me was, okay, if one mom does this and multiple moms do
this and parents do this, then maybe this is a repeatable phenomenon.
And yeah, maybe this is the way that rare diseases is going to really get solved, truly
from the bottom up.
I feel like there are so many incredible stories of different families
or people being able to find really the solutions that are needed and thinking outside of those
different realms, as well as having kind of more intimate experience and knowledge with those
different conditions. I know for some different conditions
that I've navigated, I've had so many conversations with the top specialists from
around the world on these conditions. And I'm like, hey, have you looked into this type of
mechanism or pathway or the impact of XYZ on people with these conditions. And they're like, no, it never occurred to me.
And just that connectivity between people who are actually living with things or navigating it or
supporting someone with it on that daily basis, it just has so much more of a driving mechanism
to work towards finding those solutions. Yeah, 100%.
Man, I couldn't agree more, and I love it.
And I'm so excited, too, to just kind of hear about the plan
and the vision for Curetopia.
If for no other reason, Ethan, I am so excited to find everyone
in my network who can be a part of this.
And so I think it maybe would be really fun if you kind of were willing to share some of your vision.
But I just do want to underline, I feel like telling, you know, the stories of these communities as a layer of what you guys do.
I'm so excited for that. I think there's so many of these stories where there's real heroes who were dealt a bad set of cards and were really able to make something special happen.
But it is so unfortunate that there are so many bad hands of cards.
And I actually come to Desai from the field of high-performance computing and built a of like drug discovery compute systems for pharma companies over the years. And yeah, just chronically saw how
dysfunctional the decision making was and like how many, you know, potentially easily repurposable
drugs just, you know, couldn't get approval to even, you know, take a look at. So yeah, Ethan,
what's your kind of, I'm so sorry to ask such a heavy question like
that, but what's sort of your vision, you know, like how are you imagining that, you know,
Curetopia is going to be interacting with these systems and making them a little better?
Yeah, I think first and foremost, there's like two pain points immediately that need to be
solved. The first is, you know, of all the things that these families have to do, like fundraising
is really the centerpiece of it all.
Because without that, you don't feel research and nothing happens.
So if you can take the burden of that fundraising off the backs of the families and put it on
the backs of crypto communities, I think that's kind of the first pain point that
we're solving for. And then the funds that the families have or raise can be saved for
more strategic investments, more value-adding investments in the clinic. And they don't have
to be responsible for the very first de-risking sermon all the way through. It's just not fair.
It's not scalable. It doesn't work.
So that's pain point number one to solve. And then pain point number two is really the governance,
right? Because families just get rugged time and time again. And I'm not making it up. You can,
you know, in the vision paper, Cryptopia vision paper that I'm just finalizing uh today and hopefully after legal
review and such will be available for everyone to read finally on the next few days so stay tuned
for that um but um in um sorry i lost my train of thought there for a sec but for for for drug
so so so the second pain point is governance and and so families get rugged. What do I mean by that?
So like they'll fund research in like some academic lab and the academic lab will do
it under certain terms and maybe the families don't get the best deal.
And they don't realize that they don't actually own the IP in the event of a future sale or
sale or decision by a company to stop working on the program. And so the second pain point to solve
decision by a company to stop working on the program.
is governance over the IP that's generated from the research that's produced, right? And so if
you can solve those two pain points, then I think that's really the whole reason to create Curetopia.
And then from there, there's so many places you go when you have that foundation.
And part of what the governance rights entails, like a patient's bill of rights,
is anti-shelving provisions and clawback provisions and clear sort of control over the IP
so that IP doesn't end up kind of lost in limbo where families or foundations have to spend months and months and months or years with lawyers fighting to disentangle ownership and getting the commercial sponsor and the academics and maybe multiple academic institutions that got involved, all of them kind of having to peel back their commitments.
Like ultimately, it just costs time and brain and leads to kids dying.
And these are the words I've heard from multiple parents, not me.
So those are the two big pain points I think Web3 helps solve.
And if you build on that foundation, then you can go in so many different directions.
So maybe I'll just pause there.
Oh, I love it.
And I think I am going to turn the questioning over to Kira.
But, Ethan, I'm so curious. I'm sure you have some people in this ecosystem.
But I just was at the Chan Zuckerberg Initiative Summit in San Jose and was such a cool mix of like patient foundations, families and researchers.
patient foundations, families, and researchers. And, you know, I do have to say, like, I feel
like that ecosystem is one that does well at, you know, relatively not rugging. And I do think,
though, that represents kind of like a fragmented piece of what could be a much broader ecosystem.
So I'm so excited that maybe some of the kind of cryptographic connections could weave some of this together.
But yeah, Erin, what are your thoughts?
I mean, it seems like a very beautiful, beautiful mission.
Yeah, yeah.
I guess my brain is still going to, like, what are some of these different barriers that would need to be overcome in the system? And I think you did a good job highlighting like some of the high level different challenges as
well as opportunities that Curetopia might be able to solve for and address. But in, let's say,
for different families or parents that might be approaching like the example you had given earlier, what other
barriers might they be facing that maybe other folks in the DeSight ecosystem might be able
to solve for as well if it's maybe not quite the core, core focus of Curetopia here to
plant ideas for people to keep building towards as well,
or maybe join on with different initiatives you might have in mind?
Yeah, I mean, I think crypto communities can obviously provide liquidity and funding.
And then I think there's also, you know, ability to offer other kinds of contributions,
you know, compute, compute time, analysis.
There are many things I think that, like, crypto native people for their day jobs or,
you know, just that their predilections, they like to do it anyway. And if you can harness that, that positive volunteerism that, um, and help it sort of distribute certain,
you know, tasks, especially analytic tasks and other computational heavy tasks
that, that go along with research and processing data. I think that's, that's a cool angle that I
want Kirtopia to, um, to go down. And then I think there could be other ways that the community can contribute. Obviously,
they can contribute ideas and proposals. They can even potentially have teams come together.
I think over the years, I've already developed a lot of playbooks and roadmaps that work.
And so I think your Topia's 2025 vision, and that I think will extend to 26
as well, is to sort of bring drug repurposing to all, meaning can we offer at least a first
pass of drug repurposing for anyone, anywhere with any of the 10,000 rare diseases? And so
we're developing approaches and partners that can help us achieve
that goal. I think the first partner we're working with is obviously Perlara, which is the first,
you know, PBC and biotech that I created in 2014. And it's become kind of a metabolic focused
company. And so, you know, we have plans already for how to scale across how to scale drug repurposing across inherited metabolic diseases. And so
that's kind of, I think, the real core focus of the roadmap in the next couple of quarters.
And we already have a test flight and project for a particular rare metabolic disease called
AARS2, RS2. And we just got data this week that's kind of the green light
to do our drug screen.
So hopefully we'll have results,
hopefully to time it with the auction
where we can already show
what the grant we got from Bio
that we can, again,
with playbooks that we've already established
with families and for Lara,
but now transferring over
sort of funding and governance
participation to crypto
communities we can now kind of like really hit the ground running and like do dozens and dozens
and dozens of these metabolic diseases using our tried-and-true yeast protocol so that's kind of
the initial use of proceeds an initial focus but I'm also working with a group called Combined Brain and a group called Unravel Biosciences.
Combined Brain is an umbrella group that represents a bunch of neurodevelopmental disorders, NDDs.
Neurodevelopmental disorders represent about a third of all rare diseases.
That's 3,000 of them.
So Combined Brain is like this perfect sandbox of 120 of those 3,000 neurodevelopmental
diseases where you have already micro communities that have sprung up. 120 affiliates are with
Combined Brain. Several of them, I think, are CZI, Chan Zuckerberg Initiative Rares One awardees.
So these are kind of the movers and shakers already in rare, but they're
still representing tiny ultra disease communities, right? So combined brains like this, there's
voting block, they have common biotech, sorry, they have common biobank infrastructure, other
shared infrastructure. But they've been talking with a company called Rambo Bion Sciences,
which has a really cool drug repurposing test, which is basically a nasal swab.
So it can be given and sent to anyone anywhere in the world.
And as long as you have nostrils and you can administer a nasal swab, you can do this type of drug repurposing.
So we have plans that we're kind of, you know, fleshing out withined Brain and with Unravel to be able to scale up
this drug repurposing approach, which would be more agnostic than the metabolic disease-focused
stuff. But yeah, ultimately, we want to be able to say that we can take drug repurposing to all,
to all the 10,000 rare diseases, to anyone, anywhere, anytime. Obviously, we may not be able to pull that off all in one stroke, but at least with combined
brain, we can show how it's possible to do it for a very large cohort of like 120.
And then I think from there, you can see ways where we can scale up.
And I'll pause there because obviously, Kutopia's vision is not just limited to drug repurposing.
We also realize that's just the gateway to drug discovery and targeted therapies and
a much longer fight to get a cure.
But you kind of get to that summit of a cure from a base camp of drug repurposing.
So maybe I'll pause there.
Oh, my gosh.
I mean, I have to say, I think it's such a beautiful and smart first step, but one that
will take you in the direction
of the other things you mentioned.
And I would be very remiss, since you mentioned the issue of compute, for not plugging my
nonprofit.
I just put a link in the chat, but we basically provide compute, no questions asked, to rare
compute no questions asked to rare disease researchers.
disease researchers.
And actually very excited we'll be generating and validating a new neuro compound with the
Baylor Medical School team through CZI.
So anytime you need some computers, sir, please reach out and we got you.
But you also did mention something and I actually am so curious.
Aaron, had you heard of Perlara bio before?
I had, but mostly through the ecosystem here and maybe through Jocelyn Pearl as well.
So, yeah, that's how I've heard about it, but definitely following along for at least the past, I think, couple of years that it's been on my radar.
Super cool to have kind of those resources available for the acceleration and kind of this other container for Curetopia to be able to just kind of leverage that and moving forward.
to just kind of leverage that and moving forward.
Yeah, and seriously, maybe if you would be open to sharing
just a little bit of the Perlara story,
because I even just think there's a big, I mean, I'm projecting,
but it feels like there's a big piece of inspiration in Perlara
that's kind of common to the Desai movement.
But maybe I'm wrong.
No, no, yeah um so i mean i've been serving the same mission for for yeah for 12 years now and
you know perlara as a public benefit corporation i've established that in 2014 you know that was
at the time there was crypto back then but but still very embryonic days.
So the public benefit corporation vehicle was the best thing at the time available to me to try to honor this vision of doing things with patients and building medicines with patients.
Um, so yeah, Perlara has, you know, it's in its 11th year now and it's a sustainable
sort of, um, consultancy and, and can do drug repurposing as a service.
Um, but, but ultimately I think I started to feel that the PBC vehicle, uh, still seems
early days.
Although I know I've seen, I'm seeing new PBCs being formed in biotech all the time.
Obviously Mark Cuban has a PBC, Cost Plus Drug Company.
But it's still pretty niche.
And honestly, all these PBCs are still basically private.
And so until they become public, you can't really, I think, reach the potential of the PBC because it's basically when it's a private PBC,
it's basically just a C Corp like anything else. So it's like what you do with that title or with
that marketing. So I think all of those lessons of the PBC, and I'm still bullish on the PBC vehicle
and still think it's just going to take a longer time horizon to really mature. But I thought at some point that that same spirit might actually be best channeled
through Desai and through a container or separate kind of Web3 native entity. So that's why
I realized I needed to create Kirtopia. I was first just calling it RareDAO as a placeholder
name, but also realized I didn't want to have DAO in the name.
No offense to those who do, but I didn't want to make it about the DAO.
I wanted to make it about the vision.
So yeah, so the vision of Kyrtopia is the same vision that animates Perlara.
It's just I think that the PBC rails kind of take you only so far right now but i think the web3 rails can can you know build a
foundation that matches the pbc spirit kind of from day one and aligns it with communities from
day one and makes it real from day one um so yeah there's a through line obviously through everything
i've done with pilara and pilara will continue to exist. But I see Pilara as becoming a metabolic disease company and that's really its mission. But then the PBC mission, I think,
is something that needs a new vehicle in some ways. In fact, I'm kind of toying with this idea
of rebranding the PBC itself from public benefit corporation to public benefit community. And I think that's kind of what I'm going to refer to maybe, you know,
offhand or, you know, cheekily,
you can call Curetopia a different kind of PVC,
a public benefit community,
one where it's built on these Web3 foundations from the beginning
and don't have to be transplanted on later.
And then because it's a composable biotech or like anything
else, Web3, then it can partner with whoever it chooses. And then Kirtopia serves as this kind of
acceleration layer, transaction layer. So it can really always be disease agnostic,
geo agnostic, and really adhere to this vision of everyone. It's all comers, all diseases,
all rare diseases.
The mission is to eradicate them.
You're in scope at some point,
if we can find the community and the funding to support you.
Amazing, love hearing more and more support mechanisms continuing to be put in place.
One question that popped into my mind earlier, and for anyone listening in, if you have any questions for Ethan as well, definitely pop that into the comments down below, or you can request the mic to pose a question into the conversation here.
But one question that I was curious on is, are there any specific umbrella of research areas that you might be focusing on first
or kind of specializing in?
Or how do you see that roadmap of solving those 10k rare diseases yeah the first the first line of attack is drug
repurposing because you have to sort of do repurposing you have to attempt it for every
rare disease and you know i'm rooting for every cure i'm rooting for there to be an ai oracle
where you just tell it your disease and tell it your genome and other conditions, and it will just give you a very high confidence set of recommendations for drug repurposing.
But that day is not here yet. So we have to build that data with real models or with real patient
biosamples. So the first line of attack for all 10,000 is offered drug repurposing, at least the
first pass.
And if you're a metabolic disease, we have a special track.
If you are neurodevelopmental disease, we have this other track.
And we actually think that the neurodevelopmental track could scale to any rare disease, including
EDS and adult rare diseases, autoimmune rare diseases as well.
So I do think that something like Unravels Tech could scale to all, but again, not wedded I feel like something just happened.
I might have accidentally muted us.
Eric came up on stage.
Stanley got booted off.
Oops.
We have a whole situation going on.
Not sure where you stop hearing me.
Well, Ethan, if you don't mind, can I?
Because the tangent you were going on is kind of the question that I was really hoping to ask.
Can you talk to me about what quality data looks like in the realm of rare diseases?
I'm a huge data management nerd. what quality data looks like in the realm of rare diseases.
I'm a huge data management nerd. I think one of the largest benefits
of decentralized web infrastructure
is actually data management, more so than funding itself.
So I'd be really curious to hear
what current best practices look like,
what interoperability across rare disease research and communities look like,
and how Curetopia is thinking about this more generally.
Yeah, I mean, there's a lot of fragmentation already. I think, you know, when we do repurposing
with yeast, it's pretty straightforward, the data outputs, and, you know, we basically have posted
all that on X or on Substack in some form. So I think, you know, we basically have posted all that on X or on Substack in some form.
So I think, you know, there are playbooks for sort of design native publishing, but there's still kind of a bit of experimental phase.
I think when it comes to just interoperability in general, a lot of rare disease groups just end up siloed. But then, you know,
there are efforts on the genome sequencing side and others for there to be consolidation. And,
you know, there are groups like RareX that try to set up these federated platforms for data access.
What I've learned over the years is it's just a lot of stuff going on there and that there isn't
one best necessarily solution that rules them all. There maybe is a lot of good solutions that people use.
And so I think Herotopia's philosophy is let's just plug and play
and let's work with a DCI publishing platform to try publishing.
And if it doesn't work, we'll try this other one.
And when it comes to storing the data or sharing data,
I know there are best practices.
We can roll with those and plug and play with infrastructure.
So I don't want to overcommit to any one thing or be dependent on one thing, but I think
Kirtopia is going to be organic in its growth. And so we'll be open to different ways of
just using best practices or creating best practices if we have to. But at this stage,
with the repurposing we do, there will be data sets.
For RNA sequencing data sets, there are standards we'll adhere to.
So I think as we get going, I think we'll try to keep things simple. But I'm open to putting into practice whatever the best sort of D-Sci infrastructure is for publishing, data sharing, data archiving, all that good stuff.
That's awesome. Thank you so much.
You know, there's nothing like some well-curated and well-organized data.
And I see we were actually able to pull my good bro, John, up on the stage.
And there's a dimension of rare disease data that Eric and Ethan,
I would so love to get your vibe on.
And that's that it isn't just useful for rare disease
patients, that we actually might have a lot to learn about biology from these kind of like rare
and unusual cases, right? Oh, yeah. I mean, like this whole rare to common thesis people talked
about a lot of times, you know, the statins are the best example of this. Statins now, I think, I can't remember what the stat is, no pun intended, but over a certain age, a large number of adults are on statins.
And how did you get to that level of market penetration?
Well, it didn't start out overnight.
Statins were first approved for a rare genetic disease called familial hypercholesterolemia. People
were dropping dead of heart attacks in their 30s and 40s with like, you know, 250 level LDL.
And statins were first used to address that unmet need in the rare market. And then over time,
it became clear that congenital heart disease, you know, was actually, you know,
that the statins were protective. And then the label got expanded. And GLP-1s actually started
out in a much more narrow indication than like certain forms of diabetes. And then obviously now
for obesity, much bigger market. So the time and time again, there are examples of going from rare
to common. And it's in every case you know
sort of like nobody had a crystal ball so yeah i think i would expect you know we have this on the
kirtopia site like people have used many metaphors for the rare to common i think oh you know if you
have a space view which is kind of like the kirtopia by the way you can think about rare
diseases as wormholes and you enter this wormhole thinking you're in one
part of the universe studying some some corner of biology and next thing you know boom you're
the center of some black hole and it's touching everything so that's kind of a feature not a bug
but i don't know if john or anyone else had any other thoughts on that
uh are you talking to me or yeah john i feel like i've learned so much about this from you in
general and then also in the particular context of uh you know eds which i think is teaching us
more and more about many different body systems so yeah john if you would share your perspectives
i would be so grateful uh yeah sorry i kind of came in late and kind of chipping in and out.
Perspectives on just on the broad EDS, like what in particular?
Oh, well, John, really anything you wanted to share.
But what we were kind of most curious about is the role that research in rare disease can play in all of biology and really all of medicine.
Absolutely. So I'll just jump in and say that, you know, the opinion that got me, and Stanley knows
about this, so he was on the call, but the opinion that got me the telomere to telomere
genome, and just for the record, that is like a complete genome sequence that is gapless.
It was only accomplished in 2022.
It's like perfect.
The opinion that got me $500,000
invested into me was the idea that rare disease patients, you know, are basically the keys to
understanding biology because we understand what a biological system does more when there's
something going wrong than when there's something going right, you know? And, you know, there's
multiple ways to do this. You know, of course you can do the thing where you can, you know, and, you know, there's multiple ways to do this. You know, of course, you can do the thing where you can, you know, of course, engineer sick people, which would be
unethical, or you can basically just take people who are already sick and try to understand them,
right? So like, we're like the ethical way to really decode biology. And, you know, and we
should kind of be treated like, you know, like oil, you know, like we're like, we're like the oil for for the process of, you know, building a model of human biology that can serve everyone.
Right. And so I was going to say, I was going to say royalty, but maybe that hits two birds with one stone.
Oh, I do think that's actually a good word, to be honest, actually.
Royalty. I do think, you know, right now it's actually a very kind word to use for rare disease
patients. Cause like, honestly, rare disease patients are treated like untouchables in India.
Like really we're, we're like the bottom of the bottom. We're not even talked about like every,
like on the news, like there's like, like, for example, like we'll just about to get talked
about, like some, we're getting some momentum in the news and everyone, but then there's like a
shooting, right? Everyone talks about that. There's a, there's a war. Everyone talks about that, you know? And, and it's just like, you know,
we're so unimportant. Like our suffering has been normalized so much that the call is royalty is
actually really fucking nice. It's like going from the bottom untouchables to like, you know,
someone that's actually, we're actually being acknowledged for the suffering that we're
enduring. You know, we're not like, you know, a lot of us deal with pain that makes us, I'm just going to be frank, wants us,
makes us want to end our lives. You know, like, I mean, in Canada for EDS,
the government will subsidize euthanasia. It actually can look it up, ask, just look it up,
ask AI systems. You know, John, I'm so sorry, bro. We are not in the world we deserve. And as a rare patient myself,
I have to say the kind of broader society's posture is sporadic and unsatisfying.
But I just want you to know, man, I think about you every single day. And I know a lot of people
do too. And a lot of people on this call are right out on the front lines.
And then I really do think though that what you're doing just for the reasons you're talking
about just getting through your days is heroic because like you guys say, as a computer scientist
when I'm trying to figure out a system that's not working or should be working different,
we go in and we put in print statements, right?
And for a patient that's like your phenotype.
You know, you need to have the process going on under the hood, presenting itself some way.
And yeah, there's like major ethical concerns with sort of approaching it, you know, the other way.
But then we have this opportunity to both do good and do well, you know, by getting that data generated and mobilized for use. And, you know, I have to say,
like, it's maybe a nerdy thing to get extra hyped about. But the part of the Curetopia mission where
this data would be, you know, organized, aggregated, put into, you know, application is very exciting.
Yeah, I mean, it's just you, you, you guys live it. And it's, it's the silent scourge and the world just doesn't care about rare.
And making a marketing phrase like that doesn't make it so.
But that's really why Kirtopia exists is because people will finally care about rare.
And maybe it's going to be because it's the crypto angle.
And maybe it's going to be because of whatever it is to draw them in at this point.
I don't care.
But it can't be a, you know, this silent scourge just can't go on.
And, you know, everyone's like envisioning the flag being planted on Mars. It's like, if we don't solve a lot of problems with
just like human biology and, and living in space, and guess what? We are going to gain insights into
that from rare diseases. It is a hundred fucking percent guaranteed. So yeah, it's like this moment
is now. And, um, that's why I'm so, it's like a solemn responsibility, but it's also like, let's go.
Because, you know, just the people on this call today, you can feel how much intensity,
how much desire there is to get this done.
And, you know, you don't have an ounce of that in like a thousand, you know, just random
pharma employees.
I mean, no offense to them, right?
But they're just like, they're basically powerless.
And just a few rarities activists and, you know,
have the power of like thousands of like traditional, you know,
worker bees and pharma.
It's like, wait a minute, you know, you've got to realize your power.
And so hopefully crypto will align incentives.
And that's kind of what's always
been missing is is the aligned incentives actually i am no i i couldn't agree more and and i um you
know maybe maybe heard a glimmer of something what you're saying that i agree with which is that you
know this i think should be our generation space program You know, we should make it our goal to, you know, plant, you know, a flag on the mountain
of ending rare disease.
And, you know, I think if we get to the top of that mountain, the things we'll find along
the way will make the whole world so much better.
So, you know, I'm just so grateful for Curetopia and your work.
And John, too, for your advocacy and your storytelling,
I really have to say the kind of commitment in my life that I have to rare disease
really comes from seeing people like you guys stepping up
and deciding to try to push the world in a little bit of a different direction.
And then kind of going in that new direction or thinking about how we get there.
Ethan, what could we be doing to support you the best?
Is it finding good members for the Curetopia community?
What can we do to help, sir?
Well, honestly, I think, you know,
as I'm learning how to navigate crypto,
and I've built communities before, and it's like there's always challenges. you know, as I'm learning how to navigate crypto and, you know,
I've built communities before and, and it's like, there's always challenges.
I think, and especially since, you know,
we've decided to kind of go ahead and, and embrace the Solana moment.
I think what I would, I think where I could use the most help is,
you know, Solana is going to mean a lot of volatility. Right.
And so we, we know, we know we love the pump,
but then we know that comes with the dump.
And we've seen it with Miracoin.
We've seen it with Jackcoin.
These are the kiddo coins that got launched on Solana
and kind of sparked the imagination
that you could sort of not just have these vacuous meme coins.
They could actually be vehicles to fund important work like
rare disease research. So I guess my question is how does Kyrotopia become strong as a community
so that it can withstand the inevitable insults are going to get hurled at us from DGENs or people who just aren't really here for the
mission. They're here for the pump. And I want to encourage there to be a lot of long-term holders
of Cures. And I guess I'd love your feedback on how to do that from a community management point
of view. And yeah, any other things that you think, you know,
would, would help just make Kirtopia a robust community, given that crypto is a wild place.
Well, I think John has his hand up. And so I'm interested to hear what he has to say, but,
you know, I have to suggest, and Ethan, I don't know if this is something you'd be open to,
but if you connected with John, he is such a powerful storyteller for rare disease. And I think he also has this kind
of unique place of also being an extremely trusted figure in the crypto community. So
I honestly can't think of a better person to kind of help that communication mission.
But I would also just kind of say that I think the stories are so inspiring
in this space. And it really is a time in the world where like, you know, people coming from
a point of disadvantage, but, you know, meeting the challenge with strength is, you know, people
are just hungry for those kinds of stories. And, you know, if nothing else, like as you guys are
getting going, if there's anything where we could ever help you guys tell a story you know or you know support any project
and help tell that story like please please do let us both know yeah i love that i mean especially
as i think once i know when the auction day's happening i think in the run-up and then during
the auction and then obviously keeping the momentum going if we can share spaces together, if we can continue to bring in
sort of the most high signal trusted voices in crypto and those few people who straddle
the crypto real world like John, I think, you know, making sure that they're just continuing
to help, you know, spread the message. I think that will just help immunize the community
against the occasional DGEN inflammatory outbursts
that are going to happen.
Because yeah, I think ultimately,
I want there to be long-term holders here.
I want people to see the value in that rare disease research is just the right thing to do,
the overdue thing to do, but also just like a brilliant move scientifically
because it's just going to open up all these insights
and we're going to get there so much faster and cheaper
than if like it had to bumble its way through the TradBio ecosystem.
But yeah, I definitely think just being able to share stages
with you guys and actually focus on storytelling, because I think that's the best immunity
against degeneracy is just reminding people why we're doing it so that if you do want to just
ride the pump, okay, it won't stop. But like, I'd rather over time,
have weak hands flush out and then have a base of long term holders.
Well, you know, for what it's worth, I am planning to buy my tokens and never touch them again. I'm really proud and excited to be a member of this community and to encourage everyone in my network to engage with it in that
same way. And here is to us doing some more spaces, some more conversations. Actually kind
of so interesting that you guys are looking at kind of metabolic conditions because we're very
excited. We will be generating a set of compounds with the CZI and the human pan genome consortium that would be kind of used in genetic conditions
of metabolic defect. Or, or John, did I get that phrase wrong again? Inborn errors of metabolism.
Ah, thank you. I don't know why sometimes stuff gets in my brain wrong. My brain's designed to
don't worry about it. So there's like a million different, there's a million different ways to,
you know, the, but the other formalized term is inborn errors metabolism, but there's, there's
many, many different ways to, there's no, yeah, don't worry about it, Stanley.
No, bro, but I'm just grateful for you. And I promise you'll only have to correct me two or
three more times, I'm sure. But, but yeah, we'll be generating some of these cool proteins and
then hopefully, you know, exploring their usage with some cool partners.
And how fun would it be even to do that, you know, to do some spaces where we, you know,
did a tour of some interesting molecules and then kind of discussed their applications to science,
to patients, and anyway, just incredible stories to tell. And then anyway, with our last couple
minutes, just Aaron, maybe you'd like to kind of leave any questions we have from the audience.
I do see that one of my real heroes in the rare disease space, Crypto Shrimp, has jumped up and maybe he has a cool question.
Yeah, I just kind of wanted to interject.
Sorry, I joined late.
Don't know kind of what's been said most of the day.
the day. Had to get back to work after the Curetopia community call. But as far as maybe
Had to get back to work after the Kirtopia community call.
stabilizing the launch token, and selfishly, this is something, a rare disease that I work on
and a community that I work with. I was wondering, I've heard Ethan talk a lot about onboarding some
new rare diseases and this brain consortium that I'm really excited to learn more about and unravel and stuff like that.
But, you know, maybe one way of really cementing price stability during this launch would be inviting some existing rare disease communities to come in on this.
And one of the only ones that I'm super familiar with is EBRP, the Epidermal Isis Bullosa Research
Project, headed by Eddie Vedder. And wondering, you know, obviously, one of the best ways to protect against volatility is is finding some
long-term holders and you know stanley and i are going to both buy this token i'm going to you know
stake whatever bio token i can to support it and we're going to hold we're going to hold for the
long run but maybe incentivizing some of these already existing, um, philanthropic foundations to kind of participate
and understanding that they will be also a long-term holder. So basically trying to get
as many long-term holders as possible. Um, and I didn't know if that was something that Ethan
has thought about bringing in some of these existing foundations or not.
Definitely, definitely, definitely. And actually, I think I know,
is his name Michael? I think he's at that foundation. Yep. So Michael Hund. Yep. So Alex Silver, Alex Silver used to run it. And now Michael Hund is the CEO for it. Yeah, I met him at the
Milken event two Novembers ago. So yeah, we had dinner together. So I remember him well. That's
right. So I would love to reach out to people like that. Also talking to various crypto and deep tech VCs as well, and I've been having good conversations with them and trying to sort of gauge interest.
to get quote unquote pre-commitments or just sort of alignment with folks that would be,
you know, long-term holders and would signal that to the market. So definitely trying to be
super strategic about that. If you have any recommendations or suggestions of people
in particular, please DM me or reach out to me by any channel.
Oh, well, you know what, Ethan, I am going to reach out because I actually lead science for a cool deep tech venture fund that also has like a lot of co-investors.
So I would be so excited if we could help place some positions in the token.
And then, yeah, separately, let's all sort of work that phone book and, you know, the Rolodex and see, you know see what connections we can make. Because I think we do have to remember in Desai
that we are David up against Goliath.
And so we have to remember that the sling is our tool, right?
And our sling is community.
So for projects like this that are really important
and that are going to be the success stories
that bring this movement into the mainstream,
the advantage we have to deploy is our friends and our families.
And so, you know, this is a little mission, a little homework for next week.
Let's see who we can find to support Curetopia.
One thing that I just kind of want to say is that, you know, as everyone says, community is absolutely everything, even with a meme coin.
And I just want to point to Dogecoin as an example.
That coin is all about the love of dogs, especially one particular dog.
Right. And it's become kind of a religion.
Right. I mean, independent of any sort of financial or merit at all.
any sort of financial or merit at all. It's just people keep aping into it because they just,
for, they just love this spiritual love of dogs. And I think that something comparable can exist
for medicine, right? Like the Doge coin for rare diseases, you know, something that's just,
you know, investing in it is like a profession of love for wanting to cure things. And it's not even
about financial gain.
You know, it's all about the spiritual mission of that.
So anyway, I just wanted to point that out.
Yeah, that hits home.
Yeah, that makes a lot of sense. Thank you. Stanley, are you talking right now? I'm not sure if I'm Rogan.
Don't hear him.
Okay, cool. I thought my phone was glitching again. This really has been such an incredible conversation,
and I'm so excited for what's to come with Curetopia
and just how it might be able to have really wide-reaching arms
into so many different communities, so many different families,
and I think just kind of the snowball effect as different diseases
that haven't yet had support mechanisms in place to really be
explored in a proper way. Being able to have those in place can then allow for acceleration of
discoveries or useful resources for adjacent types of conditions as well and just that whole vision of what's coming I think should hopefully
be able to keep the cure token price rising high especially if everyone here holds throughout that
would love to have you come back on Ethan as things keep developing there or in the meantime, you're always welcome to join the weekly episodes of the
DSiMic and just share brief updates. That's a space for that as well. So a lot of opportunities
to keep engaging. Do you have any final parting thoughts or things you would like to leave people
with as we close up the space.
Yeah. Well, thank you, Aaron. Thanks, Stanley, so much for having me.
And let's definitely once I know when the auction's happening,
let's let's schedule another space together and I'll try to pop into your,
your space as well on a regular basis. Yeah.
I would just leave people with the thought of yeah I do think
Cures
just as John said if people
will channel this kind of
innate desire to
see sick people better and see their
loved ones live their best
lives like if that can be
what this ultimately is a
meme about then I'm okay with that
and but yeah it will all get started with the auction so I would say that can be what this ultimately is a meme about, then I'm okay with that.
But yeah, we'll all get started with the auction.
So I would say, if you're not following Kirtopia on X or in the Telegram channel, go check out kirtopia.xyz.
You can access those channels there.
Vision Paper will be dropping soon.
And I guess, yeah, we also have a weekly Kirtopia call
at noon Pacific every
Friday, but once I have the timing auction, um, timeline set up, then we'll be doing,
I'll be doing a bunch of spaces throughout that and hopefully seeing a bunch of you there
and yeah, wish everybody a great weekend.
And, uh, and I guess if you don't know someone with a rare disease at this point in the call,
um, then your homework is to go figure out who in your network has a rare disease.
One in 10 people on earth are affected.
So it is a statistical certainty that someone in this,
the multiple people in this room right now have or know someone with a rare
disease.
That's such a note to end on and so much hope to be solving towards in the
future.
Incredible conversation today.
And for anyone tuning in for the first time, this is a series called In the Lab with Stanley.
And behind the profile today is Erin.
We'll be back here next week diving into another lab, another scientist, and exploring the incredible work
that they're doing.
If you know an awesome scientist that we should highlight and have a conversation with here,
definitely let us know.
Reach out to Science Stanley, Aaron Desai, or Desai Mike here and we'll get that scheduled.
We also have a weekly Desai Mike episode every Wednesday, 5 p.m. UTC. That's a
bit more of a general conversation. Next week, we have a great lineup of different technology,
infrastructure, solutions, and providers in the DSi ecosystem. And gearing up for a collaboration
day we'll be doing around ETH Denver, sharing
some of the different tech stacks we have there, and also an open call for what does
the whole ecosystem need that we should be building towards more effectively.
So definitely join in on that.
Be on the lookout for the next episode of In the Lab, and keep doing awesome D-Size stuff in the meantime.
Hope you have a great weekend.
Thanks for joining in.
Thanks, bye.
