 Hi, this is Joho Sapin Bhartya on behalf of the Linux Foundation and today we have with us Sanat Kumar Ramesh, founder and CEO of Open Treatments Foundation. Sanat, there is a very heartfelt, emotional and very personal story behind the project, behind the foundation. Can you just tell me the story because there is a lot of personal things there? Yeah, absolutely. Thanks for having me on the show. It's an honor for me. My personal story starts from 2018 when my son Raghav was born. He is about two years old now, but when he was born, he had significant challenges in his ability to move his hands. He could not move his hands. He could not move his legs. He didn't eat anything by mouth when he was born. And in just a few hours after he was born, the doctors noticed that there was something abnormal with him. We didn't know what was going on at that point. And so we spent over 21 days in the hospital trying to find a diagnosis for his problem, but we found nothing. We came back home with the hopes and the promises from the doctors that he will continue to develop, that this is probably just a delay in development. But it wasn't until his first birthday that we noticed what his real problem was. And that is when we got the diagnosis that he has an ultra-rare genetic condition. How old is Raghav now? He's two and a half. So not only he bravely survived, he's still fighting. So you know the condition. You know it's ultra-rare, so doctors, medical science, doesn't know much about it. But you are doing something about it. What are you doing? After we got his diagnosis, I went back home and I started Googling to really understand, is this really rare? How can it be rare? We have so many scientific advancements. We have CRISPR. We are talking about going to the Mars sometime soon. We are talking about lunar tourists and how can it be so rare? Turns out there was just nothing, nothing on Google about this disease or this biology or this gene. So I put together a team of scientists that agreed to help me out. I wrote a blog post sharing my story and shared it with my friends and family. The blog post went viral and we ended up raising over $100,000 in less than two days. And this is a point where I realized over 2,000 people, and these are folks that I don't even know, over 2,000 people came together and donated and wanted Raghav to succeed, wanted Raghav to walk in the park, go to school, go to college just like you and I would do. And this changed my perception on what I should be doing. This gave me the hope. So I started leading through the scientific literature to see what drugs I could use on Raghav right away. And we identified 36 drugs that we could repurpose for his condition. And after getting one of the drugs started on Raghav, we noticed a significant improvement in its energy levels to a point where he was able to lift his head up for the very first time that he's never done in 15 months of his life. So I knew that I was onto something here. I created a cocktail of four different drugs. Got Raghav started on the cocktail. And in about nine months, we noticed a reversal in some of his skeletal abnormalities. And so through my experience of helping find a treatment for Raghav, and we are not done yet. We're still on the mission. There are still a lot of challenges for him. But through my experience, I realized that this whole process sucks. Patients and patient families like us have to go through this journey again and again and again. Having known nothing about the biology. I don't even know what genes were before all of this diagnosis. And we are having to sort of reinvent the wheel and boil the ocean to help find a treatment for our loved ones just because no one else does. And so I decided to start a, I decided to challenge the status quo using a software platform, which is what I am best equipped to do because of my background as a software engineer. And so I'm starting a new initiative called Open Treatments Foundation to decentralize drug development and give the power of software platform to allow every drug developer, every person in the world to help build a treatment. And this person could be, you know, a patient like me. This could be a family member. This could be a scientific expert who knows a lot about the biology, but does not know a lot about the drug development process. And this software platform will empower them to help build a treatment for them. So your background is in software, but you are creating a foundation which calls Open Treatment, which is, if I'm not wrong, more about medical science. So this is not as easy as writing a serverless, you know, application or creating a serverless technology. It's much more challenging. So talk about some of the challenges that you see when you created the foundation that you are also not only aware of, but you're willing to tackle. At the same time, you cannot take on everything. So you are like, hey, this is only that I am willing to do as part of this foundation. Tell me the scope of this foundation from this premise. This is what we think about healthcare, right? You go to a doctor, you get a prescription, you come back home, you take the pills, you're fine. And that is the traditional clinical healthcare. And this happens after a drug hits the market, after someone was born and they were reasonably healthy, but then they got sick. But what happens when you were born sick, when there is no treatment for your condition? What do you do in that case? You go to biotech, you go to the preclinical set of healthcare where you ask biotech companies, hey Pfizer, hey Novartis, hey big biotech companies in the world, can you please find a drug for this medical condition just like you've done for thousands of other conditions. Just like the COVID vaccine, for example, was born out of biotech. But unfortunately, for over 7000 rare diseases affecting 400 million patients worldwide, 95% of them do not have any treatments. And I'm talking about 400 million patients worldwide not having treatments. And if you put all of them together into a country, this is the third largest country in the world that we're talking about. And unfortunately, most of these diseases will not have a treatment in the next several years. And all of these patients would probably die just hoping for a treatment. And so now my question is, why can't the biotechs help us? Well, they're really eager and anxious to help us, but unfortunately, the economics don't allow it. For my son's condition, there is nine patients worldwide. And if a company was to invest 100 million dollars to find a treatment for nine patients, how much would they have to charge each one of us? What is the risk that they're taking on? It is just impossible. But how do we then end up getting treatments for all of these patients? The answer is we put the power of building treatments in the hands of patients. And that's precisely what I'm doing with open treatments. And again, this is not a new movement. This is how AIDS got their treatment 20 years ago. This is how spinal muscular atrophy got their treatments. Dishon muscular dystrophy, progeria. There are a lot of what you call really, really rare conditions that nobody would care about. Today, I have treatments because patients let the charge. And patients or parents like me would start a foundation, would raise a lot of money, would go invest in academic research. They would urge the biotech institutions to take up the research that they have created so far, be risk it for them, and then the companies would go through the FDA to get an approval to make a drug available to market. What we are doing with Open Treatments Foundation is mechanizing the process of finding a treatment, the process of creating a drug using a software platform. And so if you think about how treatments are built today, there's a lot of serendipity involved. When I found a drug for my son, I was just incredibly lucky because someone had done the research and posted it online. And not every parent or not every disease can get lucky. And we cannot rely on luck or hope being a strategy for saving our loved ones. And so through Open Treatments Foundation, we are building a software platform that will empower patients and patient-led organizations to go build a treatment for that condition. And we provide them a very clear roadmap. Starting with one particular technology called gene therapy, we provide them a very clear roadmap to build a treatment starting from scratch to going all the way to dosing their first patient. We also connect them with a global talent pool of people that are necessary for them to advance these programs because when you think about patients leading the charge, they don't have all the expertise themselves. They need to create a team. They would typically have a team of scientific expertise from academic institutions, but they usually lack the drug development process expertise, which is what we provide as a supplement. And then we also connect them with infrastructure through contract research organizations, through academic institutions, through co-facilities, to manufacturing organizations that will allow them to execute their activities like how a sophisticated biotech would do. And so with these three pillars, through the roadmap, through people and infrastructure, we hope to create a more efficient drug development process that will help us get to treatments six months sooner, eight months sooner, two years sooner. And that's patients getting treatments that much faster. Now, can you talk about your association with Linux Foundation, how are you seeking their help, and how are they helping you? So when I got this idea of starting a software project to help patient foundations, I knew it had to be open source because this problem is way beyond one person to tackle, one foundation to tackle. This is an ecosystem problem. That humanity should come together to tackle this problem. And what better way to do that without open source? So if I can build a software platform and make it available for the community to take it forward, even if my foundation doesn't exist 10 years from now, even if I don't exist 10 years from now, someone else could pick it up and run with it. And this is precisely why we wanted the project to be open source. So I talked to Linux Foundation about this, and they were incredibly supportive of this project. So they helped spin up a completely separate project under their umbrella called RADCAMP. And all of the source code that we are building as a part of Open Treatments Foundation is hosted under RADCAMP. And we made it so that this is under Apache 2.0 license that anybody else can use for both commercial or non-commercial purposes, as long as they abide by the license. All of the data that we share is under Creative Commons. So it is free for anybody to use and reuse without really worrying about intellectual property. And we did this specifically because we wanted the community to take this project forward. And Linux Foundation is helping build that foundation, build that community through the expertise of building and maintaining open source communities over 20 years. They also have a huge expertise in bringing companies together to invest in some of these open source projects to make them move forward. And you can take an example as Docker, for example. There are several companies that are part of the cloud-native computing foundation that are advancing the cloud-native ecosystem forward. And I hope one day that RADCAMP will have a community of companies that are interested in advancing RADD diseases forward through software. And that's precisely why I wanted Linux Foundation to be a part of this. And that is why they are helping us out. Do you have any specific roadmap for this project? What does it look like? So we plan on launching this project by the first week of April. And we have... I intentionally made the decision that we need to build a community of software developers empowered to tackle RADD diseases. And so right now I have a team of 15-plus software engineers, product managers, UX designers, content writers, scientists, a variety of people that are helping us build the software platform for us to launch. So we will have the product launched by the first week of April, at which point we hope to have three to five patient foundations that will be using the product to start building their gene therapy treatments. And then once we start... Once we launch this in April, we have a pretty lofty roadmap that we want to tackle going forward. But my focus will continue to be on creating a movement for software engineers to come and contribute to this ecosystem. Because I believe we have the skill to build tools to help RADD diseases. And how did humanity develop and become so good today is because the early man's built tools. And software engineers are sort of the new tool makers of the world. So we want software engineers to come together and anybody that is capable of helping us build software to come together and help build this RADCAM project and open treatments project so we can tackle our roadmap in 2021 and going forward. Thank you so much for taking time out today. First of all, best wishes to Raghav and I do hope that he will continue to get stronger because his dad and there is a whole community who is concerned about his well-being. So first of all, good luck with that. And I really appreciate not only for taking time out to talk about the project but also starting something which is going to help not only your son but a lot of other kids around the world who need such kind of help. It's a small movement but you are absolutely right that we need just the way we have democratized core technologies that our lives depend on. We also need to democratize healthcare. Healthcare should be not only human right we should not have to worry about basic things. We should only think we should have to worry about is look up at the stars and plan how to go there. We should not have to worry about feeding our kids or keeping our kids safe or educating them. This is not what civilized society should look like. So thank you for starting that initiative because I do feel that this might trigger a much larger movement. So thank for your work and I look forward to talk to you again as there is more progress done to both rare cramp and open treatment. So once again thank you. Thank you so much for having me. It's exciting.