Hosted by Noor Siddiqui, CEO of Orchid, each episode is a deep dive with experts in critical fields like AI, genetics, reproductive technology, and more.

Conceivable with Noor is a podcast that discusses technologies and ideas that will fundamentally impact our world. It examines topics that will have a massive impact on the future, and how each can help us live healthier, happier, and more fulfilling lives.

Conceivable with Noor

A father's heroic fight to help his daughter find answers to a medical mystery with Rohan Seth, founder of Lydian Accelerator

January 11, 2024
Season
1
Episode
1
30:51
Show Notes

Our guest today is Rohan Seth. In 2018, Rohan and his wife Jen welcomed their daughter Lydia into the world. Shortly after birth, she began to have seizures, and within a few weeks it was discovered that she has a rare genetic mutation affecting her brain function. Rohan shares his family’s story, their perseverance in seeking answers as well as others with the same condition as Lydia’s, the lengths they went to in order to improve the prognosis for their daughter, and their journey with Orchid. Rohan Seth and Jen Fernquist Seth have set up Lydian Accelerator, a non-profit whose focus is to accelerate building a platform to help drive the development of technologies that are extremely effective at silencing these mutations at the source. Learn more at their website below. As a registered 501(c)(3) non-profit, donations are tax deductible. https://www.lydianaccelerator.org/

Transcript

Note: This post may contain transcription errors

Noor: Rohan, awesome to have you on the podcast. How's it going?

Rohan: Going. Well, thanks for having me. I'm excited to talk.

Noor: Sweet. So, yeah, I wanted to jump right in and start with your, your tweet thread. I think it hit a chord with a lot of people and yeah, that I think it would be great to just start with the actual post.

So it reads My six month old daughter, Lydia, was born with a random genetic mutation. She will never sit, crawl, walk, or talk. She lives in pain. We were told nothing could be done for her. That's not true. We can fix Lydia and others like her today. Here's how. Over the past few months, we have done everything apparent.

Would do. We read hundreds of academic papers, built partnerships with scientists, translated foreign medical records and self compounded drugs at home. We dived into a technology called antisense oligonucleotide. Assos that is very successful at silencing mutations at the source. Lydia's treatment can be created within months, but this isn't available to most children.

Here's why. There are 6 billion characters in our DNA. Everyone has typos in this code. Some typos cause serious diseases like Lydia's, there are millions with, with serious typos, just slightly different from each other. To fix them, we need a customized drug for each patient. Traditional pharma isn't set up to make money from individual treatments.

They have labeled these as rare and moved on. These are not rare. There are millions suffering. The tech exists. ASOS can be customized within months. We are on a mission. We have set up Lydian Accelerator to fill this gap. By open sourcing processes, tools, and data, we can accelerate individual a SO treatments for all.

With each treatment, we gather more data to reduce the time and cost. We are fortunate to be part of an incredible tech community. Help us save our little girl and pave the path for others, devastated by genetic typos. Please DM meet a chat. More about how you can help. Yeah, it's really powerful and I think it, we got an an incredible num amount of attention.

Can you just take us back to those first couple of weeks and what it was like trying to unravel something that even the best scientists in the world don't know how to diagnose or solve?

Rohan: At first, I'll say that, um, it's funny listening to that post now, that was nearly four years ago and I still feel we're, we're still early in what we're trying to do, our story is some of that story you just talked about, but Lydia was born a little over four and a half years ago, and what happened with her was we had a completely normal pregnancy, completely, everything was completely fine, and then the first day was completely fine.

And then the second day she started to have these strange movements. We flagged to the doctors, and the doctors said, all kids are different. It's gonna be fine. Ultimately, we told enough people that they started to take us seriously and they, they realized that it was actually seizures. They took Lydia to the nicu.

Uh, she spent the first three weeks of her life in the nicu. They tried a bunch of different anti-epileptic medications to. To try to figure out how to fix her seizures. During that time, we were just waiting and trying to understand what we could do for her. And we started by trying to understand what could cause seizures.

And one of the things that we learned from reading some papers was a lot of these neonatal seizures have a genetic cause. And uh, so the first thing that we tried to do was advocate for genetic testing. And I know a lot about genetic testing in this world, but what was surprising to us at that time was.

We were in one of the best institutions of the world. We were at UCSF, something as common as a genetic test where something we had to fight for. We heard everything from the paperwork isn't easy to insurance is not gonna cover it. Even if you find something, it doesn't really change what you do with it.

And so you get all these answers to tell you, let's not do genetic testing. Ultimately we kept pushing and they did something called an epilepsy panel, which is they screened Lydia for 20 genes that may cause a neonatal epilepsy. And we found one of those three weeks later, we got a diagnosis. It was a mutation in a random gene called KC and Q2.

Literally the name doesn't matter. It's just some neuro gene. And that's what. Made us jump into this. Once you know the genetic diagnosis, you can actually do a lot. Even knowing the mutation itself wasn't enough in our case, we had to try to understand. Yeah, I, I wanna

Noor: actually just even jump into that piece of it because I think that most people when they go to their doctor that they're very passive.

They just listen to what their doctor says to do. How did you get the conviction and the confidence to say that? It was really critical to get genetic testing 'cause you could have gone down any number of other paths, blood tests, MRIs, like any number of other things. So how did that piece of it happen?

Rohan: Yeah, I think two things. One is bad luck. My mom had passed away from glioblastoma the previous year and I had navigated the medical system for her and realized how messed up the medical system was and how much you have to advocate for yourself. And as soon as something like that happened to Lydia, I realized we were going to be on our own.

We were gonna need to advocate for ourselves and we're gonna need to learn everything. And I think the second thing is, the more time you spend in the medical system, the more you realize you're dealing with humans. And in any field, there's some people who are really good, but most people are average.

And most of the time you end up dealing with average people and you ask questions and you see how they respond to those questions, whether the answers. Make sense or not? Like an early question I remember asking once we got a genetic diagnosis was I asked our neurologist, so what does that mean? And he said, good news.

This means she's going to be completely fine. These are just seizures she's gonna develop completely fine. And so the next question was, how did you figure that out? What information do you have? And the only answer that he could come up with was, trust me, I'm an expert. But expertise based on what data that you, that you have.

Noor: Mm-hmm. And,

Rohan: and there was no data, there was just a feeling. Mm-hmm. And when there's just a feeling, you'd have to keep digging in and you gotta keep trying to find the source of truth. And unfortunately, that's what we did. And unfortunately we found out he was wrong. We love working with our doctors and we have a great team around us, but it's important that we don't take any information at face value.

We verify everything we can.

Noor: Yeah. So when you got that panel and you got that hit, I think one, one thing that I was really surprised by was that the doctor that reviewed it with you just played it off and said, Hey, that's, it's actually not, this isn't an issue. This isn't a pathogenic variant, even though it said it on the report.

Yep. How, how, again, how did you know to not dismiss it?

Rohan: I think that was the conversation I remember having, and he was like, trust me, I'm an expert. I know that this is going to be benign. And I said, I just remember being in that conversation and realizing. This doesn't make sense. I'm gonna have to verify it myself.

And so we looked for literature to see he was right that a lot of mutations in this specific gene have both the benign form and the a more pathogenic form. Yeah. We found papers related to that. What was interesting was nearly all the benign forms of the mutations were inherited. In fact, nearly all, not nearly all of the benign forms were inherited.

Yeah. And so that means that because it is a dominant gene, one of the parents should have had it. An obvious test at this time should have been, let's test the parents to see whether they have one of these mutations. That'll con confirm whether or not this is benign. That wasn't offered to us. We had to fight for it several weeks, and based on reading about that, that we've advocated for so-called SHEEO testing, testing, mom and dad as well.

We didn't have the mutation. It was spontaneous in Lydia. That's one of the things I'm excited about what you guys do, because a lot of these mutations are spontaneous, what they call de novo mutations. And I, I believe that was about two months in or a month and a half in, and that's when we first felt we had a real diagnosis for Lydia.

Noor: Yeah. And that's much faster than most people. Most people, they're spending eight, 10 years trying to find out Oh, absolutely. What the cause is. So, no, I feel incredibly grateful. Yeah,

Rohan: no, we, we were lucky. There was a lot that worked in our favor, and despite all of our frustrations, we, we were better off than a lot of people are.

Noor: Yeah. I think in your post describing it, you have, you gave a really great description because I think it's, I think it's hard for people to who aren't, you know, more familiar with genetics to understand this difference between inherited or spontaneous or de novo, what that means. You said there are 6 billion characters in our DNA.

All of us have spontaneous typos in this code a mutation, some typos like Lydias cause serious diseases. Collectively, there are 7 million people in the US suffering from typos that affect the brain. Majority have affected our children. This doesn't include the millions who have already died from these I.

Prenatal genetic testing does not look for these because a typo can happen in any of one of these billions of characters. There are a handful of patients with the exact same one, Lydia's. There are only two others in the entire world. One in Greece and one in England at position 6 83 of Gene Kcn Q2 and A was mistyped as a G.

That's all it took.

Rohan: Here's what's really funny to me is we as a society have embraced this terminology around rare, because what we say is these are all rare diseases. But the reality is these are just genetic diseases. They all happen in slightly different places. It's the same root cause. There are millions and millions of people who suffer from them.

And I actually think the rare terminology kind of hurts us in a lot of ways because a. It makes people think it's not an enough, important, enough problem to solve, and B, people don't go looking for them because they think, oh, most of the time they're not gonna happen. But collectively, a ton of kids have these issues.

If you look at autism, which continues to grow in terms of diagnosis, a lot of autistic diseases can be pinpointed to Monogenetic mutations. And we're constantly finding out more and more mutations that cause autism. These are anything but rare. We just need a new class of terminology for them.

Noor: I think it's great how you call it, random and typos.

I think that's just much more relatable. Right. You know? Yeah.

Rohan: It, it, I think it's a marketing problem, but need to figure out how do you get more people excited about. How to talk about it. Rare, somehow continues to win because it makes people feel it's special. It's unfortunate, which is, I see the benefits, but there's an enormous cost to that terminology.

I.

Noor: Yeah. So you mentioned that there's only two other people in the world who have the same typo. How did you find them or did that help give you more confidence in the diagnosis or in the treatment? Yeah, we

Rohan: were lucky because there was some literature with some of the literature for our disease, for our gene said that there was a really strong, what they call genotype phenotype correlation.

So where the mutation was related to a similar outcome for the patient. And so the story for us became, okay, we already know that it's not inherited. That means it's likely pathogenic, but how bad is it going to be? Is it going to be one of those situations where the kids never walks again? Is it gonna be just one of those situations where, you know, there's some language or behavioral issues?

I. We set out to find other kids with that specific mutation. Nothing had been published before. Nothing was in CVO and other public databases. We actually looked at Facebook and then there was a group of people who had aggregated in a Facebook group with mutations and KC and Q2, and then there were two at the exact same spot.

We talked to them, we asked for their medical records. They were really gracious. They provided their Greek EEGs to us, and we just had to make sense of them to understand whether. Were they similar to Lydia's and all the records essentially indicated they were very similar to Lydia's early records. And because these kids were older, we knew what that phenotype was going to be and both these kids were severely impacted.

They couldn't sit up, they'd have no head control. Obviously they could not talk. They were severely, both physically and cognitively impacted, and that was going to be Lydia's prognosis. That is Lydia's prognosis. To some extent. We've been able to make some improvements for her, but Lydia's severely impacted.

Noor: Yeah. And I think that the other thing that's really powerful and inspiring about your story is I think that a, most people would never have been able to get to the diagnosis this fast, but then I think B 99% of people wouldn't have been able to actually do something about it. And I think that piece of it is so powerful.

Uh, you, you talked about how you discovered a, a drug you tried to contact. Can you walk us through that? It's like a really insane Yeah. I'll say

Rohan: every parent, they'll do anything in their power to help their kids. Our story is far from unique. I've met. Through this journey and people have moved and done.

Not capable of. Again, we were lucky there was some papers that indicated that there was a certain compound that actually targeted the specific gene that Lydia had a mutation in. And it was, this compound was a potassium channel opener, which is exactly what we needed because the mutation actually closed the potassium channels.

Unfortunately, the medication had been discontinued. It was FDA approved, but it had discontinued, it was a random, uh, anti-epileptic drug. Okay. But a bunch of researchers had published papers in showing how it specifically rescued KC and Q2 function. We, we were very lucky that there was existing published research connecting this drug to our gene, but because the drug was discontinued, we didn't really have a way to access the drug.

And I actually ended up contacting one of my friends, iad, who at that time was of color. Uh, and I was like, iad, how do I get this drug? Uh, IAD is just so creative. He was like, okay, here's some of the things you could do. Contact everyone who has ever published, uh, on this drug and see whether they have any left in the freezer that literally contacted.

I, I don't know, a hundred to 200 people who had, that's

Noor: actually such a smart idea. I would never have thought of that as, as an idea at all. Right.

Rohan: Yeah. So unfortunately, no one was either willing to give it to us or didn't have anything left in their freezer. And then the second idea, which was what worked for us, was get animal grade material.

These, this material is getting made in for lab experiments still. Yeah. You don't need human grade material. So we managed to. Find somebody who basically manufactured tine this drug in the raw form. We got powder. We had a friend who had a lab in India purify it, make sure to compare against the reference standard to to make sure it was actually tine and there were no impurities.

And then we contacted a bunch of random pharmacies around the US to see if anybody had ever compounded that drug in the past, and one of them happened to have. And so we got the recipe for compounding that from powder to a liquid formula and starting about four months old. So when Lydia was about four months old, we've been giving this drug to her and it's.

It's been incredible. It's the only reason she is walking. She, it was the only reason she got head controlled. It was the only reason she started crawling. Walking cognitively, she's still severely impacted, but physically she's doing substantially better than I. Whatever. Yeah. But that's just an incredible

Noor: success story.

No one else who had ever had this happen to them was able to get a diagnosis and then self compound, a drug that actually recovered so much that the disease would've otherwise taken away if it took another year or two years to get the drug.

Rohan: We got incredibly lucky. We had smart friends who gave us advice at the right times.

But it's been, I'm just so grateful for that drug. We still give Lydia that drug. It's

Noor: Can you find another supplier or you're the one still making it?

Rohan: We're still making it. There was a company that was trying to bring it to the larger population, so they created a pediatric formulation. They went through phase three trials, but ultimately, uh, they couldn't recruit enough patients with.

The endpoint that they picked, which is a separate issue. So unfortunately the drug right now is on hold for the rest of the population. I'm hoping I can do something to help other kids get access to it, but yeah, right now there's no other supplier.

Noor: Yeah. Is it just an incredible story? I think that there's a lot of people who are working on newborn screening for other diseases that, you know, the most canonical example is PKU.

If you change your diet, it just totally changes the trajectory of, yeah. The child's life. But this is like something very specific that only you were able to do that. I don't think, it sounded like you were working with the best experts in the world, but none of them thought of this proposed, this looked into it.

It was like fully something that you were able to do.

Rohan: I, I will say we didn't have a lot of help from experts, but we had a lot of help from smart people in our industry who were. Creative and who helped us brainstorm different things, so we certainly didn't do it alone.

Noor: Yeah. Could you explain a little bit more about what an A SO is and just overall why these diseases aren't basically a attacked from like the drug company perspective?

From the gene therapy perspective,

Rohan: I'm still early on this journey, despite the post being four years ago, we we're still trying to figure out an ASO for Lydia, so we're early, but the TLDR is. Traditional drugs tend to target the proteins. The way I like to think of it is like it's the hardware. The advantage of having a genetic diagnosis is you can start targeting a little bit more upstream.

You can start targeting the software, either the RNA level or at the DNA level. Um, ASOS is a technology that has been successfully, uh, used at the RNA level for a couple of different genetic diseases. Now, the hard part here is in an ideal world, you can target something that works across every single patient with a mutation in that gene.

But because of what we talked about earlier, everybody has a slightly different mutation, and so you need a different system where you can have patient customized drugs at the genetic level. When we had started working on this, this person, Dr. Tim Yu at Boston Children's Hospital had created the world's first.

Customized patient drug. He literally looked at a patient's code and programmed an a SO and delivered it to the patient with, uh, remarkable results. Since then, there have been about six or seven of, of these experiments that have happened still very much in the research phase. I think the open question for this industry is how do you scale this?

Because right now there's no way for people to make money from these customized treatments. Pharma makes money by creating a drug that works for millions and millions of people at the same time, I. The way I think about these drugs is it's a little bit more like surgery. Mm-hmm. Where you work individually with a person and you treat that person and we're not set up scientifically from it.

We're not set up from a business perspective. And the worst is we're not set up from a regulatory perspective right now to scale these. But I am very motivated to do whatever we can, but then work with really smart people to, to change that because I don't see how else we're going to. Fix these genetic diseases.

We're in such a weird place right now where we know the root cause of these diseases. We have technologies that can actually fix these diseases, but for one of these three reasons, either scientific scaling, business model or regulatory framework, we're not able to do it. And, uh, I think the, the world's gonna look different in 10 or 20 years.

The question is how many more lives are we gonna lose during that portion and. Obviously I have a very selfish interest in trying to get there as soon as possible so that I can help my daughter.

Noor: Yeah. Could you walk us through what the steps were for engaging with Orchid? What was your experience like from the start to the end?

I.

Rohan: I think I got connected to you through biology. Mm-hmm. And I think when, when I took, took a step, step back and it was like, okay, there's a chance we're gonna have another kid after Lydia. Mm-hmm. Why do these mutations happen? These mutations tend to happen when parents are older and, uh, they're spontaneous.

Like it's no one's fault. And you could. Either have the mutation, try to diagnose early, and then do all of this crazy stuff that I've been trying to do for the last four or five years with assos and self compounding of drugs. Or you could figure out a way where I. You can detect these mutations to begin with and save your child that suffering.

I remember just like messaging Balaji outta the blue on Twitter and being like, Hey, do you know anybody who's doing whole genome sequencing of either prenatally or in embryos? Because either one could be good. I. He connected me to you. I think it was still very early, but you guys were started to think about how do we do whole genome sequencing for embryos?

How do you extract enough DNA from these embryos? How do you amplify it? How do you get the amount of resolution that you need? And then how do you screen for not just the common stuff that, like what I call the 0.1% of diseases that people screen for, uh, everybody knows how to screen for these chromosomal uh, abnormalities and do a snip array and all of this stuff.

But to me what was interesting was how do you screen for every known pathogenic variant out there? And you said, yeah, I, I think we can do it. And it's very much in research, it's very much an experiment. But if you and Jen are interested in taking part, here's a couple of places where you can get your embryos extracted and, and then we'll do the rest.

And it was incredible because, um, I had not heard of a service that offered anything close to that.

Noor: That's the other really powerful thing about your story is that we went from research consented embryos to our first patient case, and that was so powerful. That kind of led to everything else. And now obviously it's commercially available to everyone else, but it required you guys to do that research study at Stanford to propel everything along and move it forward.

Was there anything unique or remarkable about working with Orchid?

Rohan: I think my experience with the medical system is always surrounded by people who tell you why you shouldn't do something, and it's all surrounded by bioethicists and what could go wrong. And I think one of the things that I really liked working with you guys was I.

It was always about what's the best thing to do for the kid? It wasn't a lot of fear of technology. It was, Hey, this is the most, this is the way to have kids. This is the way to reduce diseases in kids, and this is the way to reduce suffering. And everyone felt aligned to begin with and it was just like nice not to have to deal with.

Lectures from people who don't understand that.

Noor: Who would you recommend Orchid for?

Rohan: I'm, I'm on the extreme side of all of these things, which is, I don't believe, um, anyone should have kids naturally, not because, uh, there's anything wrong with it. It's just because your probability of disease is higher.

And so if you can reduce disease for your kids, it's the best thing you can do for your child, for yourself. I think, especially folks who are having kids a little bit later on in life in the mid to late thirties or even later. I think there's a lot of benefit of screening your embryos for genetic disease.

I think one, one other thing I'll say is folks have this notion that in utero we'll do prenatal genetic testing. I don't think people understand how few diseases are getting screened for at that stage. Maybe you're looking at 0.1 or 1% of the diseases at that time, and something that you can do. Uh, at the embryo stage is so much higher.

Uh, um, I think everybody should do it. The question is how quickly can we scale the technology?

Noor: Yeah, and I think the other trouble with doing the testing once the pregnancy is in progress, is that for that small fraction of things that you can test for, then the only you know mitigation option is to terminate.

Can you talk a little bit about how you're feeling about the future as a result of screening your embryos with, with Orchid,

Rohan: certainly more optimistic than I would've been, uh, before I, I, I like love the fact that this is possible. I think there's just so many things that could go wrong when you have a kid.

Let's try to control the ones that we can and we understand the genetic code. Let's look for mistakes in that genetic code. And Orchid is doing that and. I know that statistically, um, it's unlikely that if we had a natural kid, we would have another kid like Lydia. But there's always that fear and it's about giving your kid the best chance.

Noor: Your story is just so powerful in the sense that you found out something and then you moved mountains to be able to actually make a huge difference in your daughter's life with that information, that basically at every step of the way people were. Diminishing or trying to tell you not to pursue, and the fact that you pulled all those threads made a night and day difference for your daughter.

Rohan: I, I hope that more people look at genetic testing as a necessary thing that we should have for everything rather than only applying to these extreme cases. Because for me, the fact that we can actually understand a genetics is such a huge advantage. I'd love for us to do more. To reduce disease as a result of it.

Right now, our way of fighting diseases is just so archaic. We just deal with the symptoms afterwards. Once you know the genetic code, you can solve the disease earlier on. Yeah, and I think it's going to the source code, it's, it's so much easier. Better.

Noor: Yeah. What do you think about the argument that basically detecting or alerting parents of these diseases in embryos or in pregnancy diminishes or minimizes the life of people who have those conditions?

Rohan: I think of it as, and no one's like diminishing anyone's life, like my daughter has this disease. I love her more than anything else in the world. I will do anything in my life to make her happy and comfortable. And that's literally what Jen and I spend a hundred percent of our time. We prioritize her over everything.

And so I don't think her life is diminished. The way I think about it is. If we had a chance to reduce her suffering, wouldn't we take that chance? Let's say we had a two embryos, one with that pathogenic mutation and that gene KC and Q2 and one. Without that, of course we would pick the second one and we would've had the same kid and the kid would just have suffered less.

And that's how I think of it. But I don't think it diminishes the people who. Are already suffering for it from it. We have to do everything in a power to make them comfortable, to help them.

Noor: I think the hope is that there's so many billions of dollars. I think it's $400 billion is the cost of individually rare in aggregate very common diseases.

It's the cost is on par with the biggest killers, like heart disease, cancer, Alzheimer's, but unfortunately there's not as much invested in the treatment. So hopefully if you can get more people to avoid disease, then some of that money can be displaced. Absolutely.

Rohan: What you guys are doing, trying to fix it at the source.

It feels like it's gonna be more easily scalable. Obviously it's too late for somebody like Lydia, but that's why I get so excited about something like Orchid because you're preventing an entire generation from having these types of diseases.

Noor: I, I really loved the piece that you wrote. You talked a little bit about advice for parents.

You said, advocate for your child. Verify everything your doctors tell you. The clinician controlled diagnostic process is broken and archaic. Keep talking to experts till you find someone who is collaborative and genuinely curious. If we had gone with the wait and watch approach, we would be months behind in Lydia's treatment.

We don't know how much more irreversible damage there would be. Demand genetic testing. Do as thorough testing as you can get exome genome since it can help with future therapeutic targets. It's absolutely ridiculous for doctors to push back against these. These are much cheaper now, and to be honest, I don't even understand why these need to be clinician ordered.

If you're willing to pay out of pocket, make sure to do trio testing, father and mother to, there's a chance of inheritance. I just feel like so much about your stories so exceptional. There's unfortunately lots of people right now who something is not right with their baby, and they don't know what to do.

They don't know who to trust. So if you have any other sort of words of advice or, or wisdom for those folks about how to navigate the next step. I've

Rohan: grown to appreciate how little I know. The only thing I, I keep coming back to is question everything that you hear. Don't take anything at face value. Try to get down to the nuts and bolts to understand whether or not something makes sense from first principles.

And that's hard. You're dealing with so much. So I know that's not the easiest thing to do. My, my hope, honestly is that there are more of us who can solve this at a more systematic way. And there are companies like Orchid that it gets started. There are nonprofits like leading Accelerator that are actually successful at scaling these NF one therapies.

I hope like together we can just change the system.

Noor: Could you talk a little bit more about Lydia and Accelerator? I think that's another piece of this that's so impressive is that every step of the way, it's not just Lydia that you're helping, it's the entire next generation of folks who have these conditions.

So can you talk a little bit about how people can help what's happened so far?

Rohan: The real answer is we're really early. Our goal with Leading Accelerator was once we identify the gap of these therapies not getting invested in, we try to understand why. And I think a lot of it was, it is just pharma is not incentivized.

The folks who are working on it, they tend to keep this stuff under lock and key because their hope is that maybe there'll be some way for them to make money out of it. They don't know how to make money out of it. And so one, one thought that we had is, look, we need to do something for Lydia. We're gonna work on this.

Can we work on it in a way so that we share every single thing that we learn from that process. And that's what our hope is. Follow some sort of an open source strategy. It's not something that's happens in biotech as much, and it, it's, it's not something we've done yet, but our hope is we don't need to be the people to scale everything for everyone.

But if we can enable the next Rohan, then maybe, uh, they can enable the next one and people can just build on top of it while we're still trying to figure out the business model. But in the short term, all we're doing is we're doing a ton of experiments to create one of these treatments for Lydia and a couple of people with her genetic mutation in her gene.

Noor: Are there any teams or scientists that you wanna shout out as maybe they were particularly helpful or just like am amazing to work with?

Rohan: We've worked with so many people, we're so grateful for the folks that we get to help with. We probably work most closely with Boston Children's Hospital. There's a lab there, and we've been really lucky there.

But really the most excited that I am is in biotech. You can work with CROs. These are contract research organizations, and you don't need academics. You don't need people who are doing, uh, work in, in an academic lab, uh, with a big name brand behind them. You can pay money to these CROs and they do phenomenal work.

They can screen cells for them, they could do mouse experiments for you. And so, uh, my hope is that eventually we can move all of this work outside of academia and just form it out to different CROs because it's cheaper. You get better talent and it's more accessible to more people.

Noor: I just think it's just super impressive.

You're a computer scientist and you basically became a, uh, biotech, CEOA drug compounder, a like academic scientist, and you learned all of these different skills.

Rohan: I barely know anything to be very honest. I'm just like, just trying out a bunch of stuff and hoping something works, so maybe I'm just more comfortable just shooting to the wall and seeing what happens.

Noor: Yeah. We're very humble. Yeah. It was such a, it was such an honor to. Get to work with you, to get to talk to you. I just think that your story and your level of agency is just so inspiring. I just think that every time I am, you know, dealing with some sort of problem, okay, what would Rohan do in this situation?

And it just, it's really just, it's truly heroic. I think that other parents and just other scientists and everyone is just really inspired by what you've been able to do. I just

Rohan: feel so grateful to work with you guys. Yeah. Because what are you doing is truly amazing and. It's actually something that can help more people today.

And yeah, I just feel grateful that you guys decided to, to take us on.

Noor: It wouldn't have been possible without you. So yeah, we're super excited for more babies to be bored and for more screening to happen. Awesome. So good to chat with you and it was an honor to have you on. Thanks Rohan.

Rohan: Yeah, thanks for having me.

This is fun.