Conceivable with Noor: Building Lydian Accelerator with Rohan Seth

Conceivable with Noor: Building Lydian Accelerator with Rohan Seth

This article is a transcript of Episode 1 of Conceivable with Noor, featuring Rohan Seth.

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.

You can find the original episode here:


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

Rohan: I'm going well, thanks for having me. I'm excited to talk.

Noor Siddiqui: 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 I think it'd be great to just start with the actual post. So it reads: My 6 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 a parent 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 ASOs that is very successful at silencing mutations of 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 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 ASO 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 me to chat more about how you can help.

Yeah, it's a really powerful and I think, you got an incredible 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: Yeah. At first, I'll say that it's funny listening to that post. Now that was nearly 4 years ago, and I still feel where 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 4 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 doctors said, all kids are different. They said it's going to be fine.

Ultimately we told enough people that they started to take us seriously and they realized that it was actually seizures. They took Lydia to the NICU. She spent the first three weeks of her life in the NICU. They tried a bunch of different anti epileptic medications 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 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 had to fight for everything, the paperwork isn't easy and insurance is not going to 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 KCNQ2. 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.

Noor Siddiqui: I want to actually just even jump into that piece of it, because I think that most people when they go to their doctor, 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 because 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 realize 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're going to need to advocate for ourselves and we're going to 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 going to 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.

And and there was no data. That was just a feeling. And when there's just a feeling, you have to keep digging in. You got to 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 Siddiqui: Yeah. So when you got that panel and you got that hit, I think one thing that I was really surprised by was that the doctor that reviewed it with you just played it off and said, “Hey, this isn't an issue. This isn't a pathogenic variant”, even though it said it on the report.

Rohan: How, again, how did you know to not dismiss it? 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 going to 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 a benign form and a more pathogenic form. 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.

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 confirm whether or not this is benign. That wasn't offered to us. We had to fight for it for several weeks.

And based on reading about that, that we advocated for so called trio 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 [Orchid] do, because a lot of these mutations are spontaneous, what they call de novo mutations.

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 Siddiqui: Yeah. And that's much faster than most people. Most people, they're spending 8, 10 years trying.

Rohan: Oh, absolutely. Now, I feel incredibly grateful. Now, we were lucky. There was a lot that worked in our favor. And despite all of our frustrations, we were better off than a lot of people are.

Noor Siddiqui: 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 who aren't 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 and mutation. Some typos like Lydia's cause serious diseases. Collectively, there are 7 million people in the US suffering from typos that affect the brain. This doesn't include the millions who have already died from these.

Prenatal genetic testing does not look for these. Because the typo can happen in any of one of these billions of characters. There are a handful of patients with the exact same one. For Lydia's, there are only two others in the entire world, one in Greece and one in England. At position 683 of gene KCNQ2, an A was mistyped as a G.

That's all it took.

Rohan: Yeah 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 important enough problem to solve and B) people don't go looking for that because they think, oh, most of the time they're not going to 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 Siddiqui: I think it's great how you call it random and typos. I think that's just much more relatable, right?

Rohan: Yeah, it's, I think it's a marketing problem. We'll 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 that it's special. It's unfortunate, which is, I see the benefits, but there's an enormous cost to that terminology.

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

Rohan: We were lucky because there was some literature for our disease, for our gene. 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 going to be just one of those situations where some language or behavioral issues?

We set out to find other kids with that specific mutation but nothing had been published before.

Nothing was in ClinVar and other public databases. We actually looked at Facebook and there was a group of people who had aggregated in a Facebook group with mutations and KCNQ2. And then there were 2 at the exact same spot. We talked to them. We asked for the medical records.

They were really gracious. They provided their records, and we just had to make sense of them to understand whether they were 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 had 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 is severely impacted.

Noor Siddiqui: 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 percent of people wouldn't have been able to actually do something about it.

And I think that piece of it is so powerful. You talked about how you discovered a drug, can you walk us through that?

Rohan: Yeah, I'll say every parent, they'll do anything in their power to help their kids. Our story is far from unique. I've met parents through this journey and people have moved mountains and done incredible things that I'm 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 closes the potassium channels.

Unfortunately, the medication had been discontinued. It was FDA approved, but it was discontinued.

It was a random anti epileptic drug, but a bunch of researchers had published papers in showing how it specifically rescued KCNQ2 function. 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. I asked “How do I get this drug?” A lot is just so creative. He was like, okay, here's some of the things you could do contact everyone who has ever published on this drug and see whether they have any left in the freezer.

I literally contacted, I don't know, 100 to 200 people

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

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 2nd idea was to get animal grade material. These, there's material is getting made in for lab experiments still.

You don't need human grade material. So we managed to find somebody who basically manufactured this drug in the raw form. We got powder. We had a friend who had a lab in India purify it, and made sure to compare against the reference standard to make sure it was actually riticabine and there was 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.

So when Lydia was about four months old, we've been giving this drug to her and it’s been incredible. It's the only reason she is walking. It was the only reason she got head control. It was the only reason she started crawling and walking. Cognitively, she's still severely impacted, but physically she's doing substantially better than before.

Noor Siddiqui: Yeah, but that's just an incredible 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 have otherwise taken away if it took another year or 2 years to get the drug.

Rohan: We got incredibly lucky. We had smart friends who gave us advice at the right times. I'm just so grateful for that drug. We still give Lydia that drug.

Noor Siddiqui: Did 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 they couldn't recruit enough patients with the end point 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 Siddiqui: Yeah, it's just an incredible story. I think that's there's a lot of people who are working on newborn screening for other diseases that. The most canonical example is PKU. If you change your diet, it just totally changes the trajectory of the child's life. But this is like something very specific that, only you're 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 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.

I'm still early on this journey, despite the post being four years ago, 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 the DNA level. ASOs is a technology that has been successfully 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, that everybody has a slightly different mutation, you need a different system where you can have patient customized drugs at the genetic level.

When we have started working on this this person Dr. Tim You at Boston Children's Hospital had created the world's 1st customized patient drug. He literally looked at a patient's code and programmed an ASO and delivered it to the patient with remarkable results. Since then, there have been about 6 or 7 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 same time. The way I think about these drugs is it's a little bit more like surgery where you work individually with a person and you treat that person.

And we're not set up scientifically for 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'm very motivated to do whatever we can, but then work with really smart people 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 I think the the world is going to look different in 10 or 20 years. The question is, how many more lives are we going to 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 Siddiqui: Could you walk us through what the steps were for engaging with Orchid? What was your experience like from the start to the end?

Rohan: I think I got connected to you through Bali. And I think whenever I took a step back and it was like, okay, there's a chance we're going to have another kid after Lydia. Why do these mutations happen? These mutations tend to happen when parents are older and They're spontaneous, like it's no one's fault. And you could either have the mutation, then 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 ASOs and self compounding of drugs, or you could figure out a way where you can detect these mutations to begin with and save your child that's suffering.

I remember just like messaging Bali out of the blue on Twitter and being like, “Hey, do you know anybody who's doing whole genome sequencing of either prenatally or an embryos because either one could be good,” and he connected me to you.

I think it was still very early, but you guys were starting 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. Everybody knows how to screen for these chromosomal abnormalities and do a SNP 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 think we can do it. 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 I had not heard of a service that offered anything close to that.

Noor Siddiqui: I think that's the other really powerful thing about your story is that we went from research embryos to our first patient case. That kind of led to everything else. 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 1 of the things that I really like working with you guys was 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 Siddiqui: Who would you recommend orchid for?

Rohan: I'm on the extreme side of all of these things, which is I don't believe anyone should have kids naturally. Not because 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, and for yourself.

I think especially folks who are having kids a little bit later on in life, in their mid to late 30s, or even later.

I think there's a lot of benefit of screening your embryos for genetic disease. I think 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 at the embryo stage is so much higher. I think everybody should do it. The question is how quickly can we scale the technology?

Noor Siddiqui: Yeah, 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 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 orchid?

Rohan: Certainly more optimistic than I would have been before. I 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.

We understand the genetic code. Let's look for mistakes in that genetic code and Orchid is doing that.

I know that statistically 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 Siddiqui: 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, night and day difference for your daughter.

Rohan: 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 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. And I think it's going to the source code.

It's so much easier, better.

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

Rohan: I think no one's diminishing anyone's life. I think 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 100 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 that we had a chance to reduce her suffering, when we take that chance, let's say we had two embryos, one with that pathogenic mutation KCNQ2 and one without that, of course, we would pick the second one and we would have had the same kid and the kid would just have suffered less. That's how I think of it.

But I don't think it diminishes the people who have already suffering from it. We have to do everything in our power to make them comfortable to help them.

Noor Siddiqui: I think the hope is that, there's so many, billions of dollars, I think it's 400 billion dollars is the cost of individually rare in aggregate, very common diseases. Its 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 and that money can be displaced.

Rohan: Absolutely. And I think what you guys are doing, trying to fix it at the source, it feels like it's going to 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 Siddiqui: 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 control of the diagnostic process is broken and archaic. Keep talking to experts until 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 is 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 too, if there's a chance of inheritance.”

I just feel like so much about your story is so exceptional. There's unfortunately lots of people right now for whom 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 wisdom for those folks about how to navigate the next steps.

Rohan: I've grown to appreciate how little I know. The only thing 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 1st principles. And that's hard. You're dealing with so much, so I know that's not the easiest thing to do. My hope, honestly, is that there are more of us who can solve this in a more systematic way.

There are companies like Orchid that get started. There are nonprofits like Lydian Accelerator that are actually successful at scaling. These NF1 therapies. I hope like together we can just change the system

Noor Siddiqui: Could you talk a little bit more about Lydian 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. Of these therapies not getting invested in, we try to understand why. And I think a lot of it was it's 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 thought that we had is look, we need to do something for Lydia. We're going to 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 we follow some sort of an open source strategy. It's not something that happens in biotech as much and 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 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, 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 their gene.

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

Rohan: We've worked with so many people. We are so grateful for the folks that we get to help. We probably work most closely with, Boston Children's Hospital. And we've been really lucky there. But really the most excited I am, is that 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 work in an academic lab with a big name brand behind them. You can pay money to the CROs and they do phenomenal work. They can screen cells. They could do mouse experiments for you.

And so my hope is that eventually we can move all of this work outside of academia and just farm it out to different CROs because it's cheaper, you get better talent, and it's more accessible to more people.

Noor Siddiqui: I just think it's just super impressive. You're a computer scientist and you basically became a biotech CEO, a drug compounder, a academic scientist. 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 at the wall and seeing what happens.

Noor Siddiqui: Very humble. It was such an honor to get to work with you and 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'm dealing with some sort of problem, I'm okay what would Rohan do in this situation?

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

Rohan: I just feel so grateful to work with you guys, 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 take us on.

It wouldn't have been possible without you. So, yeah, we're super excited for more babies to be born and for more screening to happen.

Noor Siddiqui: Awesome. So good to chat with you and it was an honor to have you on. Thanks.

Rohan: Yeah. Thanks for having me. This was fun.

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