Our guest this week is Sanath Kumar Ramesh of San Jose, CA, IL, the father of a son with a super rare disease, a successful tech executive and co-founder of the Open Treatment Foundation.
Sanath and his wife, Ramya, have been married for 7 years and are the proud parents of Raghav, who is 3 and was diagnosed with SSMD or Sedaghatiantype Spondylo Metaphyseal Dysplasia an extremely rare progressive disease.
Sanath is very open and transparent about his early denial. And we learn about Sanath’s efforts to create the Open Treatment Foundation, a non-profit dedicated to creating a software platform that streamlines therapy development for any monogenic rare disease regardless of rarity and geography.
We also learn about the Raising Rare Podcast that Sanath hosts to draw attention to the Open Treatment Foundation and efforts to educate, enlighten and inspire those touched by rare disease.
It’s a fascinating and uplifting story about gratitude, overcoming denial, as well as making the most of life, in the face of rare disease.
Open Treatments Foundation – https://www.opentreatments.org
SSMD – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8542321/
Email – firstname.lastname@example.org
LinkedIn – https://www.linkedin.com/in/sanathkr/
Raising Rare Podcast – https://podcasts.apple.com/us/podcast/raising-rare/id1500783011
Please take the SFN Early Intervention Parent Survey and as a token gift, receive a Great Dad Coin – https://tinyurl.com/5n869y2y
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.
Sanath Kumar Ramesh: Obviously we didn’t want a procedure done on our kid when he was just weeks old, and so we were in denial that something was wrong with him. So we continued the NG tube for about six months, I think, during which he did lose weight. We pushed him hard and tried to make him learn to swallow and drink by mouth.
Never happened. We failed catastrophically with it. And the moment we got the G-tube, life changed. Like his vomiting changed, his quality of life improved astronomically. He gained weight. He was way more happier. He could speak, because honestly, the tube down his throat was irritating his throat. It just changed the quality of life, like night and day.
Tom Couch: That’s our guest this week, Sanath Kumar Ramesh, the father of a son with an extremely rare disease and co-founder of the Open Treatments Foundation, helping families with rare diseases. We’ll hear Sanath’s story and how he’s working to help families with members who have these rare diseases. That’s all on this week’s Special Fathers Network Dad to Dad Podcast. Say hello now to host David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help, or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.
Tom Couch: Now let’s listen to this conversation between Sanath Kumar Ramesh and David Hirsh.
David Hirsch: I’m thrilled to be talking today with Sanath Kumar Ramesh of San Jose, California, the father of a son with a super rare disease, a successful tech executive and co-founder of the Open Treatments Foundation. Sanath, thank you for taking the time to do an interview for the Special Fathers Network.
Sanath Kumar Ramesh: I really appreciate you having me here. It’s incredible.
David Hirsch: You and your wife, Ramya, have been married for seven years and are the proud parents of Raghav, who is three and was diagnosed with SSMD or Sedaghatiantype Spondylo Metaphyseal Dysplasia, an extremely rare progressive disease.
Okay, let’s start with some background. Where did you grow up? Tell me something about your family.
Sanath Kumar Ramesh: I grew up in Chennai in India. So it’s in one of the southern states. And Chennai is I think one of the more populated cities in the southern part of India. I definitely grew up in a very, very urban neighborhood. So if you think about India, don’t think about grasslands and rural areas. Like I grew up in just a farm of buildings. That’s my background.
David Hirsch: Okay. When you were growing up, did you have siblings?
Sanath Kumar Ramesh: No, I didn’t.
David Hirsch: So you’re an only child?
Sanath Kumar Ramesh: I am an only child. And pampered.
David Hirsch: Okay. And out of curiosity, what did your dad do for a living?
Sanath Kumar Ramesh: He worked as a regional sales manager. He’s probably gonna be unhappy, because I probably didn’t tell the title right. But he worked as a sales manager at a company called BASF. He’s retired now.
David Hirsch: And in a prior conversation, I think I mentioned to you that there’s a little family connection to BASF, but it’s not worth going into. But it’s a very well respected German outfit, obviously doing business all over the world, including there in India.
So I’m sort of curious to know, how would you characterize your relationship with your dad?
Sanath Kumar Ramesh: It’s very interesting, because we’ve been pretty close. At the same time, we’ve not been as close, I would say. He claims himself to be my friend, philosopher and guide, and I agree with that.
David Hirsch: Okay. So were there some important takeaways from your relationship? Something perhaps that you’ve tried to incorporate into your own parenting?
Sanath Kumar Ramesh: Not specifically into my parenting, but I’ve come to realize that I have a thing for reading books of a very specific kind, that I have just picked up from my father.
It’s business books. Because he used to read them a lot as I grew up. And I would just peek into those books and like ask him questions in the books and stuff like that. And that interest has scattered over a lot to me. It’s helped me quite a bit through my professional journey and my non-professional journey as well. So I’d say that probably had the biggest influence among everything.
David Hirsch: So his interest in business and then reading about business is what I heard you say. And I’m wondering if there’s any other characteristics about your dad that you’ve tried to emulate.
Sanath Kumar Ramesh: He’s generally pretty positive about things. It also has a lot to do with my mom. She’s way more positive than my dad, and that is something that has helped me in certain tricky situations where you just don’t want to look at the negative side of things. Like you just want to be completely oblivious of all the wrong things that could happen, because otherwise you’re just overcome with fear and emotions that can never make you progress.
David Hirsch: Yeah, well, it’s an important characteristic. Not everybody sees the world that way. Some people use the cliche, glass half full versus half empty. It’s the same glass. And there’s different ways of looking at different circumstances. So I think that’s an important characteristic. Thanks for sharing.
So I’m sort of curious to know if there is any influence that either of your grandfathers, either on your dad or your mom’s side, have had on you?
Sanath Kumar Ramesh: I think the biggest influence that my father’s side grandfather has had is how curious he is about things. You know, this one little anecdote just kind of summarizes everything. One of our relatives or cousins went to Japan for some assignment and came back. My grandfather obviously is super curious, and he’s sitting with him and talking to him about everything about Japan, trying to learn from him about Japan, right?
And then he asked a question, “Well, are there cows in Japan?” And my cousin’s answer was, “Well, sure, maybe.” And the next question was, “Are these cows black, brown, spotted? Like how do they look?” And then he goes on to ask, “Well, does it rain in Japan? Is the rainwater still coming from up a bow?” And I remember the situation, because we were just laughing hysterically, listening to this conversation.
But looking back, he would’ve made a good scientist because of his naivete, looking at everything from scratch and re-examining, although it’s pretty annoying to answer his questions sometimes.
David Hirsch: Yeah, those are pretty funny. Well, thanks for sharing. So obviously that curiosity is an important characteristic that I think you made reference to.
And I’m wondering, you talked about your dad’s dad, who I remember lived to age 92 and passed away a couple years ago. Did your mom’s dad, your maternal grandfather, have any influence as well?
Sanath Kumar Ramesh: Yeah, he did, but he passed away when I was too little to have a strong impression. But my recollection and my memories of him have been that of someone who just doesn’t care. Like he’s just carefree, even in the most serious of the situations, which obviously used to drive my mom’s mom super crazy.
But then, like his anecdotes and situations, I mean, if I were to take a takeaway, obviously don’t act the way he did, because sometimes it gets too serious and you can’t be that jovial in those situations. But just having a little bit of carelessness here and there helps lighten the mood up and keep things under control.
David Hirsch: Yeah. Well, thanks for sharing another important characteristic to have about life as well. So you’re a young guy, only child growing up in India in an urban area, and I’m wondering, what was it that took you to the US and has allowed you to pursue the career that you have?
Sanath Kumar Ramesh: So after I finished my undergraduate in India, I wanted to learn more specifically in computer architecture, which is how you make computer chips go faster and do all the things that they do. So I decided to apply for my master’s here in the US. I had the option to go to UC San Diego or to Georgia Tech in Atlanta. And I chose the one with the beach, obviously. And so that’s how I ended up in the US.
I spent, I would say, six months in computer architecture, and then got really fascinated by biotech and bioinformatics back then. And so I decided I’m gonna change my career to bioinformatics. So I called and emailed a bunch of researchers that were working in UC San Diego, and I said, “My thesis is gonna be in bioinformatics.”
I did a small stint there in one of the bioinformatics labs, but it turns out I hated it. So I decided to go back to computers, and started working at Microsoft after I graduated. So that was my very small stint in biotech and bioinformatics, and it came down in full circle after my son was born.
David Hirsch: So you were at Microsoft for how long?
Sanath Kumar Ramesh: For about year and a half. After that I decided I had to do the thing that every software engineer in the world dreams to do, which is to move to Silicon Valley and work at startups. And so I did that for about three and a half years I think. And then I moved back to Seattle, started working at Amazon, then moved back to Silicon Valley for a completely different reason, but still working with Amazon.
David Hirsch: Got it. Thank you for sharing. So I’m sort of curious to know, how did you and Ramya meet?
Sanath Kumar Ramesh: We’ve known each other since middle school. We went to school together, but then we actually started dating during college.
David Hirsch: And did you get married in India or in the States?
Sanath Kumar Ramesh: In India. I mean, she moved to the States a year after I moved here. Then we obviously got married in India and then came back here, and have lived here for the last nine years.
David Hirsch: Okay. Well, the reason I am sort of curious is that I have a number of Indian friends, and many of them have been involved with arranged marriages. And I’m wondering if that’s something that influenced your relationship at all?
Sanath Kumar Ramesh: No, no, this was opposite of that. We were just thankful that our families didn’t disown us because we were of different subcategories of some religious hierarchical system. But I don’t care about any of those anymore. Back then, we were super scared, but our families took it in stride, and they were totally fine with it and supportive of us getting together. But it was far from an arranged marriage.
David Hirsch: Well, thanks for sharing. I appreciate your transparency. So let’s talk about special needs, first on a personal level and then beyond.
So I’m sort of curious to know, before Raghav’s diagnosis, if you and Ramya had any exposure to the world of special needs.
Sanath Kumar Ramesh: No, no idea. In fact, even after Raghav was born, we were in denial for a really long period. I would say up until close to his diagnosis, every single decision we had made for Raghav was under the assumption that we could fix what was broken.
And just hearing me say these words makes me feel very uncomfortable, because that is not how you think about special needs. But no one taught us that. We were always taught that kids are all born perfect, and they’re all born equal. You have a kid, you take your paternity leave, just have fun with the kid and go back to work, and they go to school, they grow up, get married, do whatever they want.
That is the only kind of life that I knew about. And so for about one whole year, we were in denial that there was something different or wrong with Raghav.
David Hirsch: Yeah. Well, thank you for owning the denial issue. It’s something that most parents face some of, and you can only look back on it, right? You don’t know at the time that you’re in denial. You can only look back and connect the dots. For some it’s a short period of time, and for others it’s a lengthier period of time.
And anything we can do as more seasoned dads to help those younger dads close to the beginning of their journey get over that denial hump, I think it’s gonna save a lot of time. And hopefully it allows you to address the issue in a more forthcoming way, so that you can get the resources that your child’s deserving of, so that they can reach the full potential. Because weeks, months, years squandered in denial are just really important developmental periods of time in a child’s life.
Sanath Kumar Ramesh: Exactly. I mean, there’s a very specific incident, and even to this day, we look back at that incident and think how crazy we were.
My son had an NG tube, a tube that goes through his nose for feeding, because he couldn’t swallow anything by mouth. Our doctors were pushing us to get a G-tube from day one, like literally from day one. Because they realized this kid is having something that is more serious than most typical kids have seen. A G tube directly feeds to the stomach and is a lot more safer. It’s a lot more comfortable. It’ll help him grow.
Obviously we didn’t want a procedure done on our kid when he was just weeks old, and so we were in denial that something was wrong with him. So we continued the NG tube for about six months, I think, during which time he did lose weight. We pushed him hard and tried to make him learn to swallow and learn to eat and drink by mouth.
But it never happened. We failed catastrophically with it. And the moment we got the G-tube, life changed. Like his vomiting changed, his quality of life improved astronomically, right? He gained weight. He was way more happier. He could speak, because honestly, the tube down his throat was irritating his throat. It just changed the quality of life, like night and day.
And I’d rather have done that decision if we had known that something could be off with him. And quite honestly, it’s a lot to do with the lack of general awareness around special needs, and a lack of general awareness that kids will be born with different abilities. Some of them might be different mental abilities. Some of them might be different physical abilities. All of them are the same.
It doesn’t matter. You give them the right support you need to have them thrive in whatever way they can. But it is not wrong to give them the support, and we fundamentally believed it was wrong to give my son the support he needed to grow. It just sounds nuts.
David Hirsch: Yeah. Well, thank you again for your authenticity and your transparency. I’m hoping that those listening to our conversation will take something away from that, especially the super young parents who, like I said, are close to the beginning of their journey, to be more accepting of the advice.
That doesn’t mean you don’t get a second or third opinion, right? That’s natural, just to be double sure, triple sure of the advice that you’re getting. But you don’t need to make it more difficult than it already is. I guess that’s one of the ways I think about it.
So what is Raghav’s diagnosis, and how did the diagnosis come about?
Sanath Kumar Ramesh: So this was on his first birthday. As we were getting ready to cut the cake, I got a call from Raghav’s doctor. She said, “We’ve found out what was bothering this little guy all along. He has a mutation in a gene called GPX4.” But she also said, “Unfortunately, all the kids with this condition passed away just a few weeks after birth.” And so she thought, at that point, Raghav was the only kid with this disease in the world that doctors ever knew of.
What was throwing us off was the fact that there was just no medication for this condition. We always assumed doctors have an answer to anything that is “wrong” with humans. And turns out there are a vast majority of diseases that doctors have no answers to, and the number of answers they have are very, very, very small.
I didn’t know all of this back then, but I was desperately searching for an answer, and the doctors couldn’t give us one. They couldn’t even give us hope, because they said the other kids with this condition passed away a few weeks after birth. And we have our son, he’s one year old, but at that point we didn’t know how long he would continue to live.
David Hirsch: Wow, that sounds like a very heavy level of information to get. And in particular on the day of his birthday, the day you’re celebrating his first birthday. I can’t even imagine, honestly.
So what are the symptoms, what are the different challenges, that somebody with GPX4 mutation encounters?
Sanath Kumar Ramesh: The symptoms vary quite a bit, but the common ones are a particular type of skeletal dysplasia, and this is just an abnormality in the way your bone grows and specifically in the ends of your bone.
These kids have what’s called cerebral atrophy, which is your cerebellum is not growing normally and as big as it should. They have a whole bunch of related issues like hypotonia, which is super low muscle tone. So Raghav cannot even hold his head up on his own. He needs support. He cannot lift his hand on his own.
They have coordination challenges. They don’t have the ability to eat anything by mouth, although some kids do sort of stay in the border line where they can take enough to sustain. They have gastrointestinal diseases, like acid reflux and a whole bunch of other complications coming out of it. They have auditory problems, hearing issues, vision issues, and list keeps going. It’s a lot.
David Hirsch: Wow. It sounds like it’s a menu of things that you don’t get to pick and choose from, but exists. And I’m wondering, when you learned about the diagnosis, it was only a couple years ago now, what were some of the fears that you faced as parents raising a child with these challenges?
Sanath Kumar Ramesh: Honestly, we didn’t face any fears back then. We had no clue what we were getting into. So the good part about being a beginner is you don’t really know how deep the ocean is, right? And you stick your leg into the ocean and hope you land on something solid. That’s pretty much what we did.
So when we got the diagnosis, we said the first thing for us to do is to find better treatments, because there’s none. And so we launched into execution mode, started a foundation, raised some money, got a group of researchers together that did some work to understand more about the disease.
The biology identified a few drugs that we could potentially repurpose, worked with the FDA to get an approval for an experimental medication. Got my son started on it. Through all of this process, we did a lot more scientific experiments, and are continuing to find more treatments for him.
Along the way we started working on what’s called gene therapy. That led down to this path of starting a completely different nonprofit organization, the Open Treatments Foundation. But all of this, again, started right after the diagnosis, because we had one mission, which is to find a treatment that improves his quality of life.
But I will say that we have come to realize that a treatment is not the only way to improve his quality of life. And there are a lot of other factors that go into it, which is what tends to be our big focus these days.
David Hirsch: Well, we’re gonna dig into that in a moment, but I want to go back. Was there some meaningful advice that you got early on that put you on this path? Because this is not a typical path for parents to be on—and I hope that came out as a compliment? That’s what it was meant to be.
Sanath Kumar Ramesh: Yeah. No, it did. I don’t think there was any meaningful advice. If there was any meaningful advice, it would’ve stopped me from going to this path, because it’s the wrong path to go into. It’s a lot of desperation. Coupled with my….yeah, it’s largely desperation driven. Like we wanted to do something about him, and coupling that with our interest in solving problems, because this is one of the most challenging problems we could ever solve.
At that point in my life, I personally was just very interested in and fascinated by different types of problems that we could solve. And I thought I’d seen and learned a lot of different problem patterns that we could solve. And a lot of them were solvable with software back then. And this was a brand new problem, and it’s a very complicated problem to solve, so I was very excited about doing something about it and trying to solve them.
The biggest piece of advice I had gotten back then was not from a person directly, but from a video that I had seen. This was Dr. Matt Might. He had a kid that passed away, unfortunately, that had a rare genetic disease. What he did as a computer scientist to find a treatment for him was just fascinating. I think there was a New York Times article on it and, and a video that accompanied that.
I remembered seeing this video a long time ago. So I just started searching for this video again, and I stumbled upon his blog post that walks through an algorithm for finding a treatment for these diseases that don’t have a treatment. And so that became my guidebook on the first few steps that I should be doing. And I was just following that to the letter to help me get started.
David Hirsch: So is he a computer scientist or a doctor, did you say?
Sanath Kumar Ramesh: He is a computer scientist by training. He was a professor in the University of Utah, and he’s now leading the Precision Medicine Division at University of Alabama Birmingham.
David Hirsch: I’m gonna have to learn more about that. That sounds like a fascinating influence on your journey. Were there some important decisions you made as parents on Raghav’s behalf that you think have helped the quality of life that you were referring to?
Sanath Kumar Ramesh: Oh yeah. Many important decisions. The first one was making sure he got his G-tube. The second one, and one of the hardest decisions to make, was to decide to pull all of his teeth out, because he had a involuntary mouth movement pattern that he just couldn’t control that was hurting his tongue and his lips. We initially thought these were blisters that showed up on his tongue and his lips. We thought it was some kind of infection or something. As we were trying to find reason for this problem, we noticed that it started getting worse as his teeth started erupting. It got worse to a point where in the middle of the night, like when he is sleeping, he would suddenly stretch his arms and legs out as though he’d gotten an electric shock.
Like you could see him in pain and distress, and he just wouldn’t be able to express that, simply because his tongue moved on the teeth and that was hurting him. It was terrible. We fought hard to keep his teeth, but then at the end of the day, we saw everything that we did to keep his teeth and realized this is not scalable. This is not going to help him. And we decided to pull his teeth.
And we decided to pull all of his teeth, so he doesn’t have any teeth now. All of his baby teeth obviously. Hopefully he will learn to control his mouth by the time his adult teeth come up. We’ll see. But it was one of the hard decisions we had to make. And there are many such decisions that are pretty hard, but then substantially changed his quality of life.
David Hirsch: Yeah. Well thanks for sharing. In addition to the G tube and pulling the teeth, were there any other decisions that come to mind as it relates to quality of life?
Sanath Kumar Ramesh: Yeah, so we got him a cochlear implant. That is also an important decision to make, because in the process, they would sort of cut the connection between the ear and the brain and substitute that connection with the device. And so if he was actually hearing normally, we would make it worse. If he wasn’t hearing, we would make it better.
After a series of tests, we realized he wasn’t hearing, and we got him the cochlear implant, and that changed his life. Like right now, he can understand words, he can gather meanings of words. His hearing has become his primary input mechanism, which previously his sight was the only strong input mechanism he had. So it was one of the big decisions we made.
Another big decision, and I think it was more to do with us then with him, was to move from Seattle to the San Jose area. We came here for better weather, so he can have a better quality of life. He can go out and do things and not be stuck in the home for nine months of the year because it’s cold and raining. That’s definitely helped quite a bit.
David Hirsch: Is it really that warm year round in San Jose? I’m thinking you could go to Southern California.
Sanath Kumar Ramesh: Oh yeah. I could have. It’s not that warm per se, but it’s sunny, and that makes a huge difference. And Stanford is one of the big contributing factors for us to move here, then to, say, LA or San Diego. And the the quality of care at Stanford has been amazing, and even if it’s not Stanford, we could find related care at UC San Francisco, or UC Santa Cruz, which are not too far from here.
And so I think it’s been one of the best decisions we’ve made. Unbeknownst to us, the government support for regional centers for covering accessible vehicles or therapies is just unbelievable here. And I don’t think that level of support exists in Washington state, as far as I could see.
David Hirsch: Yeah. Well there’s different programs. There’s pluses and minuses to both the communities. And I don’t claim to be an expert, but the regional centers in California are essential for providing resources and services to a wide range of families with disabilities, special needs included.
Anyway, thank you for sharing those thoughts though about the G-tube, pulling the teeth, the cochlear implant, the move. It’s not one thing, but a whole variety of things that you’ve made reference to, that I think have led to, like you said, your focus on the quality of life, not only for your son, but for your overall family.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad coin. Thank you. Now back to the conversation.
David Hirsch: Out of curiosity, what impact has Raghav’s situation had on your marriage, or your extended family for that matter?
Sanath Kumar Ramesh: The first big impact that it had on all of us was the acceptance of the situation, or initially a lack thereof. We were in denial. We were grieving of the loss of the imaginary future we thought we would have, and the loss of the imaginary future that my parents thought I would have, and my wife’s parents thought she would have.
That loss is still something that we are grappling with, and we’ve learned different mechanisms to cope with it. But on the plus side, we have learned to appreciate every single day for what it is, like truly. I read so many self-help books as I grew up, because my dad was a nut, he wanted to read self-help books along with business books that talk about “being in the moment,” and “taking each day for what it is,” and “not taking the day for granted,” and stuff like that.
It theoretically made sense to me, but we’ve never put those in practice until after this whole journey with Raghav. And it definitely has had a lot of impact on the grandparents too. They have a different outlook of life and their outlook has changed quite a bit through these years. It’s made them accept and appreciate that people are diverse, that not everybody will go to Stanford and become a doctor or lawyer or whatever. Different people live to different abilities and that’s completely acceptable. In a lot of sense, this has shaped everything about us and defines what we are today.
David Hirsch: Yeah. Well, thank you for being so open and transparent about that. There is something to be said for being present, not dwelling in the past, coulda, woulda, shoulda, grieving the loss of the life you anticipated, like you made reference to. And then not getting too far out ahead of yourself and anticipating all the challenges or problems, because all that time you spend in the past or too far out into the future are robbing you of today, which is the only thing you really have. It’s easy to talk about, but much more challenging to implement. So thank you again for the emphasis.
So I’m sort of curious to know, prior to the Open Treatments Foundation, were there some supporting organizations that you found for your family or Raghav’s benefit that you’ve relied on?
Sanath Kumar Ramesh: There have been several organizations like the Regional Center I talked about in the Bay Area in California. There are early intervention programs in Washington state that have supported us. We’ve obviously relied heavily on the medical system that has supported us so far.
I think one of the biggest actors in our life today that is not visible is our insurance systems that have paid out a ton of money. I don’t know how I would pay for any of this if it was not for the insurance system, because, honestly, we would’ve made decisions to not pull his teeth simply because it was too expensive, and that would been disastrous. Or not get him a cochlear implant because it was simply too expensive.
So I’m just thankful and generally grateful for the rest of the ecosystem that exists, and not just one organization in particular. Because without that support system and the ecosystem and kind of the thoughtful structures that have been put in place, we can’t be where we are today.
It is not the best system out there. Like it can be improved, and I’m trying to be a part of that improvement. But I think there’s a lot to be said about having a good system like this, because I could tell you on the flip side, none of this exists in India. So we did evaluate back when Raghav was born, if we should stay here or go back to India. We had the choice to go to Canada, for example. We thought a lot about the support structure that exists here, and we wouldn’t get any of that. You could argue maybe Canada has a different or better or worse healthcare system, but I could definitely tell you going back to India was not an option for us, because there was just not even enough therapists, or there was not enough insurance, to cover everything that we need.
I knew folks that were back in India that had special needs, and they would talk about not even having the basic equipment for his feeding. That’s like 101. That’s how he has to eat every day. And I cannot live in a place that doesn’t have this sort of a system. So I’m very thankful for all of that.
David Hirsch: Yeah. Well, you’re reminding me about a conversation that I had with one of the other dads in the network, Harsha Rajasimha. And he was the one that first enlightened me about the huge difference in resources available in the India subcontinent versus here in North America. And it seems like night and day.
And he’s dedicated a lot of his time and resources to not only educating himself as well as he can, but to try to figure out how to bring the type of resources that we have here in the States to those in India, which is pretty remarkable. What you might have picked up in business jargon as a BHAG. Are you familiar with that acronym?
Sanath Kumar Ramesh: No, I’m not.
David Hirsch: It stands for Big Hairy Audacious Goal, which is a very large and audacious goal. So I’m sort of curious to know what role spirituality has played in your lives.
Sanath Kumar Ramesh: Yeah, it’s a long topic and I could probably talk days about it. My family was pretty spiritual. I grew up being very spiritual, religious. The craziness was I thought initially when I was growing up that I was going to become a, what do you call that, a monk. I did want to, but my mom pulled me out of it. So that’s how spiritual I was growing up.
And after all of Raghav’s diagnosis and this journey, I am more scientific than spiritual, I’d say. I don’t know about the word spirituality, so I’m not gonna use that word. I’d say I’m more of a scientist than a religious person anymore, so I don’t believe in anything anymore. I question them. I try to collect facts as much as I can, and I try to disbelieve the facts and make sure I do understand what really, really matters and what doesn’t.
So it’s funny, because I’m now getting back into mindfulness, and I am approaching that from more of a scientific standpoint based on what has been done between science and mindfulness. And as crude as it might be, science is the best tool we’ve gotten to discern between beliefs and what can be a fact. It may not be a fact, but it is close enough to a fact, and we’ll have to go based on that.
Because at the end of the day, we have stepped into a lot of beliefs early on during Raghav’s first year, where we made a lot of mistakes and we made enormous mistakes because of the beliefs we’ve had. And since then, we’ve questioned every single belief, and it has led us to this path of reinventing it for ourselves. So we don’t believe it. We don’t have a belief system anymore.
David Hirsch: Yeah. Well, I admire your ability to articulate the journey that you’ve been on, and what I heard you say, if I can paraphrase, is that there’s been an evolution in the way you look at things and the way you think about things, which started out more in a religious setting and has grown to be more in a scientific arena.
And what I can anticipate is that the journey will still continue to evolve. I don’t know that they’re mutually exclusive. So maybe we should do a follow-up interview a number of years down the road, not because of this issue, but just because I’d be fascinated to see where the Open Treatments Foundation goes.
Anyway, let’s switch gears and talk about that. It’s relatively new. It’s been founded just in the last couple of years, and as I understand it, the mission is to enable treatments for all genetic diseases regardless of rarity or geography. Using—what I just verbally understand, but don’t quite understand—an open treatment software platform. So what is an open treatment software platform?
Sanath Kumar Ramesh: There’s no direct answer to it, because the platform doesn’t exist in all its glory yet. The mission does exist. So here’s my problem. The conundrum that I was facing was that Raghav’s disease has only ten patients worldwide, and his disease is so rare that I’m willing to bet all my fortune on it, that there will be no company today that would be willing to fund a treatment for him.
If you think about it, there’s a trillion dollar industry out there that’s moving trillions of dollars a year, and there’s not even a single dollar left to create a treatment for my son. So I started asking the why question. Why is this so? And long story short, I realized, if my son, or kids in the future born with this disease, need to ever get a treatment, the solutions to these problems have to include everybody, or have to at least be designed to include everybody, right?
It might not be economically feasible to include everyone today, but the design of the system will allow you to include more people down in the future. And so, for example, we launched the Open Treatments Foundation last year with the software platform to decentralize drug development.
The premise was that building gene replacement therapies is a simple process. But it obviously requires a lot of money and a lot of people involved. So let’s get patient-led organizations that are caring about their patient communities to go build a treatment for their diseases they care about. And so that way we can create a platform where, if anyone like me that’s interested in creating a treatment for the disease, they have all the recipes available to go build a treatment.
Obviously you have got to do the hard work of raising the money, getting the right people involved, but the recipe is available. And we started this platform last year. We got some feedback, and it made us realize, “Well, gee, this is not the most fundamental problem to be solved yet.” Because if the diseases do get a treatment and the patient-led organizations try and create a treatment in an academic setting, that eventually needs to be handed off to the industry, right?
Which comes back to this problem of there’s just no economic incentive to create a treatment for ten people. And so I started looking at the more fundamental problem, and it turns out that a lack of awareness about disease is the problem that’s slowing all of us down, and it’s way more fundamental than what we think about it.
So to be specific, if I were to walk into Stanford and walk to the Dean of Stanford’s biomedical research, or someone that is supposed to know a lot, they wouldn’t know about my son’s disease. They wouldn’t even be able to find a place to find about my son’s disease. That’s how rare it is.
It’s crazy, because most often you can Google it, and it’s that rare of a disease that people don’t even have a place to go browse and find new diseases that are up and coming and learn about them and help attract resources to tackle them. So what we are switching over to now is building a new platform where we will help raise the awareness of all the diseases.
And by design, the platform does not restrict itself to any particular disease. So if we find a disease that just showed up on the radar three months ago, that is still something that we will be able to show on a webpage for people to read about, understand, and potentially tackle, right?
And so the hope is that we can solve problems using software at a global scale that was previously not possible. And we are not promising that all of these diseases will get treatments, but we are at least leveling the playing field and putting every disease on the map. So that’s sort of a high level overview of what we are trying to do.
David Hirsch: Yeah. Well, it sounds very audacious as well, but if I could paraphrase what you’ve said, you’ve got to get all these rare diseases on the map before you can start to make headway into finding cures, or treatments, if not cures, for these diseases, and it’s a long journey, right? It’s not one that’s going to lend itself to immediate solutions.
And like you said, there is no, or a very low economic incentive, for biopharma companies to be investing in these areas where there are not enough patients to justify making large investments. And that’s just the harsh reality of how pharmaceutical companies do what they do.
They’re not eleemosynary organizations, right? They’re in business. And they serve a very, very valuable purpose, but they don’t serve everybody. And what I hear you saying is that what you hope to do through this software platform is to level the playing field so that more people will have access to the resources that do exist. And that by leveraging the platform, more people will get treatments than they would’ve otherwise. Is that fair?
Sanath Kumar Ramesh: Largely, but with a difference. So it’s about creating the society for the future. And it’s not about reorganizing the current society, if you think about it. So there are just no people living on earth today that are going to go build the treatments for all of the rare diseases we have.
This doesn’t exist. These people have to be minted somehow. You have to convince the Stanford professor or MIT professor to go work on this disease. And that convincing process has to be organic and potentially something that they have to stumble upon during their PhD days, or maybe their high school days. We can’t really say that for certain.
The technology that you need to create treatments might not even be available today yet for some of the diseases. So there’s a lot of things that need to happen to create a society where treatments are available. And a prerequisite for all of them is making sure human beings on the planet, either born today or will be born in the future, recognize and understand that all of these diseases exist, that 400 million patients worldwide are suffering with them, and they have a responsibility and also the tools in their hands to help go build a society where the treatments can be created.
So it’s more meta than creating a platform where every disease can get a treatment. It’s more of creating a platform that’ll then create a society where treatments will be created.
David Hirsch: Okay. Well, you’ve gone way above my pay grade now, but thank you for trying to explain that.
Sanath Kumar Ramesh: Yeah. Think about it in Lego analogies. If you think of the world as a massive Lego, just think of like a [?] that you build. It looks abstract, it looks dumb. It can maybe do one thing, right? It’s maybe a car that moves forward. But if I want to reorganize a Lego and make it into a car that moves sidewards, how do I do it? I’m not giving you the recipe, but I’m giving you enough interest so you as a person can change the Lego to make it go sidewards.
So it’s a little bit more meta than that, and therefore the outcome is not immediately obvious. But the whole idea is to reshape, is to change the society, is to change how people think about this problem.
David Hirsch: Yeah. Well, thank you. It’s very enlightening.
I’m thinking about advice now, and I’m wondering, what advice would you give to a father, or a couple for that matter, that finds themselves with a recent diagnosis of a rare disease.
Sanath Kumar Ramesh: The biggest advice I would give them is find a path to acceptance. I think that’s the first step. Before anything is possible, find a path out of denial. The sooner you can do that, the better it’ll be.
And this is not a one directional activity, right? You’ll have acceptance in some areas and not others. You’ll go back and regress, and you’ll relearn your acceptance, and the way you accept things will change over time. So you have to re-accept the same thing again later. But find your tool or your path to acceptance, and that’s going to change your life quite a bit.
Yeah. Well, great advice, very insightful. And one of the aspects of denial is that it’s not like you get over that, and it’s in the rear view mirror, and it gets smaller and smaller. Because you are gonna be grieving that loss periodically. And in a way that you can’t even imagine, things will trigger these thoughts.
So whatever you can do to, like you said, find a tool or a series of tools or a path that will help you build the mental discipline to be forward focused, as opposed to backward focused. And avoid the getting out too far ahead of yourself, like we talked about earlier. So very prescient advice.
I’m curious to know, why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network? And in light of the fact that you only have a three-year-old.
Sanath Kumar Ramesh: I think my son has taught me everything that I need to know about everything, I’d say, about life, in an accelerated way. I don’t claim to know everything, but he’s at least taught us to ask a lot of questions and not believe anything that we see or face at face value.
Which is pretty powerful, because it can help you pretty much generate all of the right things that you need in life, and spot the things that don’t work. You’re not gonna be perfect, but you can at least get there. So I’m happy to help in any way I can.
David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you for being in involved, and it’s not lost on me that while you’re offering to be a mentor father, you have so many milestones ahead of you, right? You and Ramya are just young parents with a three-year-old, and there are other dads in the network that have a decade or decades of experience. So I’m hoping that you’ll benefit from some insights that they might be able to share with you as well.
So maybe you wear two hats, your mentor hat for those families that are closer to the very beginning of their journey, and then you’ll be in the presence of others who have been there and done that. And not just over a short period of time, a couple three year period of time, but over a decade or decades. So I’m hoping that you’ll be a beneficiary as well.
Sanath Kumar Ramesh: Absolutely.
David Hirsch: So is there anything else you’d like to say before we wrap up?
Sanath Kumar Ramesh: No, I’d just like to thank you for having me here. It’s an amazing resource that you’re creating, and one that’s going to enlighten a lot of people as they go through this journey. And thank you for your focus on special needs, because that is unique and difficult, and a resource I wish I had when we had a diagnosis. So thank you.
David Hirsch: You’re welcome. So let’s give a special shout out to our mutual friend, Effie Parks of the “Once Upon a Gene” podcast for making the introduction.
Sanath Kumar Ramesh: Effie’s awesome.
David Hirsch: If somebody wants to learn more about the Open Treatments Foundation or to contact you, what’s the best way to do that?
Sanath Kumar Ramesh: You can go to opentreatments.org. That’s the web page that has all the information that we’re building. And you can always reach out to me at email@example.com.
I’m also on LinkedIn. If you hit me up, I’m looking at LinkedIn on my phone all the time. So, I’m pretty much on all platforms except one. I’m not super active on Facebook.
David Hirsch: We’ll be sure to include all that information in the show notes so it makes it as easy as possible for people to follow up with you.
Sanath, thank you for taking the time and many insights. As a reminder, Sanath is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concern. Would you please consider making a tax deductible contribution? I would really appreciate your support.
Sanath, thanks again.
Sanath Kumar Ramesh: Thank you so much.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story, or know of a compelling story, please send an email to firstname.lastname@example.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.