A Reservoir of Hope Drives Research Into a Rare Brain Disorder - Scott Reich, Co-Founder of Believe in a Cure
“There's a reservoir of hope, energy and optimism many of us have that we may not know about until we're really tested,” says attorney and author Scott Reich. The heavy test he and his wife Ilissa have endured for the past three years started when their infant son Eli was diagnosed with a rare brain disorder called FOXG1 Syndrome which causes severe seizures and impedes normal movement, speech and sleep, among other problems. Scott vividly recalls the moment when Eli’s doctor explained there was no hope for treatments or a cure. “I just felt an instantaneous gravitational pull that despite the intense emotion that overtook us in the doctor's office, we were going to do something about it.” That “something” includes starting the nonprofit foundation Believe in a Cure which is currently funding over fifty research and development projects worldwide focused on this pernicious disorder. Join us for this enlightening conversation with host Shiv Gaglani to learn about the multi-pronged strategy scientists are pursuing to overcome the mutation in this so-called master gene, the promising results emerging from preclinical programs and the supportive global community Believe in a Cure has helped create for the hundreds of other families fighting the same battle. Mentioned in this episode: https://www.webelieveinacure.org
Shiv Gaglani: Hi, I'm Shiv Gaglani. Imagine being told your baby has a rare brain disorder and will probably never walk or talk. It's the kind of gut-wrenching and life-changing moment so many parents of children with rare diseases face, as we've learned in several recent episodes of Raise the Line. As with the other parents we've spoken to, our guest today, Scott Reich, along with his wife Ilissa, overcame this heavy blow and have devoted themselves to finding a cure for FOXG1 syndrome, the rare and severe brain disorder that afflicts their now three-year-old son Eli. The foundation they co-founded three years ago, Believe In a Cure, has already funded over fifty research and development projects worldwide.
Before Scott's life was upended by Eli's diagnosis, he practiced law at Willkie, Farr and Gallagher, co-founded an online farmers market and wrote the acclaimed book The Power of Citizenship: Why JFK Matters to a New Generation. He's currently working in the General Counsel's Office at American Express and is an adjunct professor at the University of Pennsylvania. Before we get started, I'd like to thank Eli Lebovitswho first put Scott and me in touch. So, thank you, Scott, for taking the time to be with us.
Scott Reich: Great to be here Shiv. Thanks for having me.
Shiv Gaglani: Before we go into FOXG1, our audience would benefit from just knowing a bit more about your background. What got you interested in becoming a lawyer, and then actually winding up writing this book on JFK?
Scott Reich: I became a lawyer because initially, I wasn't sure quite what else I wanted to do. But what was appealing in particular about the law was the idea that I didn't have to define myself yet. The law relates to just about every other piece of society and I thought that it would make a very good professional background to be able to understand how society works, and how people and communities engage with one another, and so I went to law school and practiced law for every year since. It's been a good journey. I've learned quite a bit about the underpinnings of transactions and how people connect with one another and the basis of all sorts of professional relationships.
To answer your question about the book, Shiv, I've always been drawn to the arena of public service, and I've always loved American history in particular. Over the last bunch of years, probably my entire adult life, it has felt that our public discourse has veered very far off course and so in a completely nonpartisan way, I wanted to explore some of the themes of a presidency from not too long ago that I felt could still be relevant today. So, the impetus for the book was my search as a young person for John F. Kennedy's call to service, the famous "Ask not what your country can do for you, ask what you can do for your country." I wanted to figure out, well, where is that today in the 21st century? And perhaps most important -- if you agree with me that it's been missing to a degree -- how do we bring it back? So, the book was about Kennedy's legacy and the new frontier.
Shiv Gaglani: Well, I wholeheartedly agree with you that, you know, having this new moonshot moment could be very interesting if we could bring that back somehow through joint leadership. It's definitely a book I'm going to be checking out and I appreciate you writing it. I wanted to switch gears now. Let's go into several years ago when Eli was born. Can you walk us through the diagnosis and what you've been up to with founding the nonprofit?
Scott Reich: So, my wife and I have a daughter, Amelia, who's now five years old. Eli, as you mentioned, is three, and we have a son, Dylan, who's one. We had a normal pregnancy with Eli, and he was born and everything seemed to be smooth. Shortly after we brought him home from the hospital, we just felt that something was a little bit off. He was very irritable, he screamed quite a bit, didn't sleep well, his feeding was a little bit inconsistent and within a couple of months, we were seeing specialists because his eating was just too irregular. It seemed like he was in pain when he was consuming even just a bottle, and one thing led to another. We wound up doing a brain MRI when he was a few months old and the results of that MRI led us to a geneticist to do a test to understand if there was some kind of genetic condition associated with how Eli had been struggling. So, it was a very difficult time for us waiting for results because it could be anything under the sun, and at the same time, we had to care for him and his challenging needs.
Then in September of 2019, when he was about five months of age, we were called to the geneticist's office. I had asked to get the results over the phone. They asked us to come in, so we knew that there was something that was probably serious, and so we were pretty anxious, of course, going to this appointment. I remember it like it was yesterday. We were told the genetic report had come back with a significant finding: that Eli had a mutation in a small gene called FOXG1, which of course we had never heard of. In fact, the geneticist had never heard of it either. This caused this brain condition FOXG1 syndrome, which would basically make it impossible for Eli to talk, make it very challenging for him to ever walk and ambulate in any normal kind of way, that he would suffer terrible seizures, a sleep disorder, a movement disorder, acid reflux...I mean, the list goes on, and it's all from a single letter mutation in one copy of one tiny little gene.
I remember sitting in this meeting, and it was almost an out-of-body experience because at once you're hearing all of these horrible things about your child who is so innocent, right? He's just this little kid. He's a few months old, doesn't know what's going on, nothing is his fault, obviously, and we're being told the prognosis is basically, he has no hope. So, that's not a comforting feeling, obviously, and yet, at the same time, I was trying to process this. I remember asking the doctor questions about what our future journey might look like. Naturally as parents, you think, “Well, is there a way to treat this? Is there any kind of clinical trial? What kind of research is being done?” And unfortunately, the answer to basically all of these questions was not a lot. There were no clinical trials on the horizon, and basically it was just a really tough deck of cards.
I remember vividly that Ilissa asked the doctor, "Is there is there any hope for a treatment, any hope for something one day?" And I remember this, just being so struck by it, because the doctor said, "No, sorry." So we said, "Well, what do we do?" And she said, "Well, you should go home and love him.” As we’ve been on this journey, we've heard that many people get not only a terrible diagnosis like this, but also are told to go home and love their child, which I think many of us find perhaps a bit insulting. What else would we be doing, right? Of course, we love our child.
But I just felt in that moment, an instantaneous gravitational pull that despite the intense emotion that overtook my wife and me in this small doctor's office, we were going to do something about it. I knew nothing about science. I knew nothing about medicine. I mean nothing. I took, I think, one science class in environmental studies in college just to satisfy a requirement. Med School was never on the horizon for me and yet I just said, "Well, somebody's going to have to become the expert in this, and somebody's going to have to devote their life to it in order to make a better day for Eli and the roughly now eight hundred or so other children around the world diagnosed with this terrible disease.” And so we started Believe In a Cure.
Shiv Gaglani: That's incredible. That advice is something I've heard come up again, and again, on Raise the Line. Actually, John Crowley said the same thing: that they were told Pompe was terminal and just go home and love your child. Similarly, Matt Wilsey -- I don't know if you know him, but we had him on the podcast -- I saw him yesterday at Stanford actually. He was told the same thing. And all three of you have made tremendous progress in finding a cure for your kids. So, tell us a bit more. Like how is Eli doing right now? Then, let's go into the specifics of Believe In a Cure and some of the progress you've made today.
Scott Reich: There's no other way to say this: El struggles. He's three and a half, and he has suffered bad seizures. We've been to the hospital many times, and we've been on more calls with doctors, virtual and in-person, as we've tracked down everybody who might be helpful along the way than we can count. He has lots of therapies, so it's a pretty rough go for him and for the family. We're very grateful that our other two children are healthy and they're able to enjoy nontraditional, but nonetheless, relationships with Eli. They're like wrestling with him in his bed. They like tickling him and making noises that he finds funny where they think they'll get a laugh out of him.
But there's no way to sugarcoat it. This is a really challenging journey. Some children with FOXG1 unfortunately have tragically passed away, so there's a constant fear of what could occur and will we be able to control seizures when they come? Are we giving him the right mixture of medications because no one really knows the right way to even control many of the symptoms of FOXG1. It’s not just about finding a treatment, which is so difficult, but also just figuring out how do we treat patients on a day-to-day basis to help them sleep, to help them not move as frantically and as much and have jerky motions? How do we help them communicate to a degree, if at all? Eli's not able to communicate so, in that regard, it's very difficult.
But as one of my heroes, Winston Churchill, once said, "We didn't come all this way because we're made of sugar candy." And so with that in mind, we started this foundation. We quickly got our 501 c 3 nonprofit status and the first thing that we did -- in recognition of our limitations in terms of knowledge and what we could do on our own -- was to recruit people who could serve on a scientific advisory board for the foundation. The idea naturally behind that is to get experts who know a lot more than we do to help us develop a roadmap for how we may go about developing a treatment. That, of course, involves the creation of certain cell lines and mouse models and thinking through the types of therapies that could be useful to people suffering from FOXG1 syndrome.
In short, and without going too deep into the science, the basic problem that Eli has is he has one working copy of FOXG1 and the other copy is effectively off because of this single letter mutation that I mentioned before. For those who may not be familiar, that's simply just a typo in the DNA alphabet. This FOXG1 gene creates protein and because he has one copy that works and one that doesn't, he has roughly 50% of the protein that he is supposed to have from this FOXG1 gene. The reason this condition is so severe is because FOXG1 is what they call a transcription factor. In nonscience parlance, that means it is basically a master gene. It's like a general in the army telling troops where to go and if the general tells the troops to go to the wrong places, things don't go as you expect. That's exactly what happens with children with FOXG1.
So, the basic premise of the work that we pursue at Believe in a Cure is how do we normalize the amount of FOXG1 expression, or put differently, how do we increase the amount of FOXG1 that Eli and other kids who are deficient in FOXG1 have? Since he has 50% of the protein, we're trying to get closer to 100%, and there are a few different ways to go about doing so. We can try to repurpose a drug, which is a common strategy because these are drugs that are already in the marketplace for some other indication and we're trying to repurpose them if they have an inadvertent effect that happens to increase FOXG1 expression. We are pursuing gene replacement therapy, where we're essentially trying to develop healthy copies of the gene in a lab and then use what they call they a vector, but essentially like a spaceship, to deliver billions of the correct copy of this gene that could be delivered to the brain, and a few different other things.
There's gene editing, there are antisense oligonucleotides. I don't want to go too deep on the science here. But those are the different strategies we're pursuing and at present, we have three preclinical programs that are showing in vivo -- meaning in living organisms, like mice -- showing positive data, which is encouraging. We signed a research collaboration agreement with the National Institutes of Health which has been a great validator of the work that we're doing and obviously helps us in terms of resources to be able to accelerate the work that we're doing.
Shiv Gaglani: That's incredible progress in three years all, having now these several promising potentials. I'm curious, what have been some of the influences as you've set up the foundation and scaled it. I know I put you in touch recently with the Heather and Ryan Fullmer who do venture philanthropy, but before then you would obviously not have been operating in a vacuum. So, tell us a bit about those influences and then also, you mentioned that you know of around 800 children who have FOXG1. How has it been building this community of families? Any highlights there? Or lowlights...either way.
Scott Reich: The first question regarding influences...I would say that there have been a number and frankly, more often than not, they're nonscientific. They're really about how do we carry ourselves when we're confronted with a kind of adversity that we don't expect, and that perhaps, you know, we don't anticipate ever having to get past in our lives. And so for me, my parents raised me and my siblings with a general belief that we have the power to make a difference in the lives of others, and that we have an obligation to do so. That belief, which I think carries through the focus and interest in public service that we described before, has always been an inspiration for me and has made me feel empowered to do something that could be impactful. My wife Ilissa shares that feeling too, and so we draw strength from one another in terms of getting through the day. Sometimes she's having a tougher day than I am. Sometimes it's the opposite, but we try to lift each other up.
Another thing that's been very helpful and inspiring for us has been connecting with leaders of other rare disease communities because we're not the only people on this type of journey, and in fact, that's probably been one of the biggest lessons that I've learned throughout this, which is that we're not alone. It's tempting to feel lonely because of how challenging the journey is, and because at the end of the day, people can help as much as they can but it's in our house where all the stuff resides. We have to sleep there, and we have to deal with everything and it never really ends. We never get to turn off and shut down. But in speaking with other people who have built organizations, who have developed treatments, or are in the process of doing so, for diseases that impact their children, we've been able to get a lot of tips. We've been able to learn about some of the hiccups and obstacles that come along the way, as well as how do you get wins? How do you basically put things together in a way that can advance your work?
What we're really talking about here, Shiv, is building community. It's about connecting with people that may not have the same journey, but may be on a similar one. We all deal with challenges and adversity, and I think that we reveal our character in how we try to embrace those challenges and overcome them. So, part of it also goes to the latter part of your question about connecting with other families that have the same disease as Eli. We get a lot of inbounds, of course, from families around the world who have either read about the work that we're doing or come across it in some way and want to learn about how we are doing it and ask about what kind of support can they provide, and they've done so.
Again, it's about building community. The more that we can bring people under the tent and connect with one another and recognize that we're similar and have challenges that confront us all, I think there's strength in that that we can all draw on.
Shiv Gaglani: Yeah, certainly. I think that's something we've learned a lot through these rare disease interviews, as well. And in a couple of weeks, we'll have the Rare As One group from the Chan Zuckerberg Initiative on. Their name reflects that while each individual condition or zebra is rare, together it affects hundreds of millions of people directly and then their families. What are some of the things you've learned about yourself on this challenging journey and things you've learned maybe about others?
Scott Reich: First thing that comes to mind, Shiv, is that there's a reservoir of energy and hope and optimism that I think many of us have within ourselves that we may not know about until we're really tested. In my case, I just continue to try to dig deeper and when there's nothing left in the tank, just find more and keep going. We're racing against the clock here, because we don't know what Eli's journey is going to be and we know that the earlier we're able to intervene with the treatment, the better the potential outcome may be. So, with that sense of urgency in mind, there's an element of stamina and just kind of high-octane energy that I think a lot of us have when we put our minds to something and say that we're not going to rest until we've achieved one of our big goals.
Another rare disease parent gave me some advice very early on that I thought was very compelling and I've never forgotten it. This was in the context of receiving support from people that are in your orbit, in your network...not people impacted by rare disease, but people who are in your community who may be helping your foundation, and so forth. What this gentleman said was, "Keep your expectations low, and don't get angry when somebody might disappoint you, because you'll wind up being angry all the time." And I thought, "Gee, that sounds like a pessimistic way to go about something." But what I think he meant was that you get surprised in both directions -- positive and negative -- around people that are in your life and how they step up or don't step up to support you.
I'll focus more on the positive because, you know, I'm a half glass full type of person. There have been so many people in my life who I thought would step up and have, but I have been unbelievably surprised and blessed to have people in our lives who I really didn't think would do something significant or substantial -- and it doesn't have to be only writing a big check, although that's of course, very important -- but I've been pleasantly stunned by the number of people who have stepped up and want to be there. So, we've been just really fortunate to have a community partly that we've built and partly that we've been blessed to just simply be part of --whether it's on Long Island where we live, or just around the world when people feel connected to our story. We've had people come out of the proverbial woodwork who we may not have spoken to for twenty years and then they write a huge check because they just say, “Hey, I came across the story and it moved me and we love you and we want to be helpful."
And you know, what do you say? I mean, other than thank you, and how humbled we are to receive that kind of support. There are some people that may not be able to write a large check, but who dropped off cookies at our door or send a dinner every couple of months. These small things to just remind us and people like us that we're not alone and that people care about us and the journey that we're on, are really humbling and moving experiences for us. So, what we've learned is that despite all the stuff that we hear in the world about how divided we are politically, despite all the stuff we hear about all the darkness in the world, there's a lot of light and the capacity for humans to do good is truly endless.
Based on that belief, we're grateful to have this community and we also believe in the work that we're doing. We believe that something which some might perceive to be impossible is merely something that has not occurred yet, and so we feel confident that we're going to develop a treatment. I can't give you a definitive timeline. I don't know exactly what that outcome looks like. But we feel we will get a treatment into Eli and a lot of other impacted kids and that's the force that drives us forward every day.
Shiv Gaglani: That's inspiring. And I think it's a really good reminder for our listeners -- many of whom are currently students so they don't have big checks to write in many cases right now -- but there are things they could be doing to help. Those include, at a minimum, awareness and educating themselves about FOXG1 so that when they meet patients like Eli, they're able to be as helpful as possible by at least getting them to your foundation and to other kinds of things that people could do, that you mentioned.
So, obviously you know a lot about FOXG and that's another commonality we’ve found among parents of children with rare diseases: how quickly they educate themselves and become basically they're their own biggest advocates and scientists in their own right. Tell us about how you got educated over the last few years and were able to become an actual contributor and decide which projects to fund with Believe in a Cure.
Scott Reich: The best way to describe it, Shiv, is to say that it was the equivalent of being dumped into the middle of the Atlantic and having no idea where to go or how far away land might be. That's the best way to do it. You fight like hell, that's what you do. You fight like hell, even without the answers until you figure out in which direction you want to go or for how long you need to do it and what other resources you may need. In our case, I basically said, “Well, I don't really know even where to begin looking. But the logical thing is for me to Google FOXG1 and start reading articles from scientific papers and academic studies and see if the gene has been mentioned in different places." For every single paper that I read, there were probably two hundred words that I had to look up and I went through the painful process of looking up every one of them.
I can't say that we're lucky, because who would ever want to be on this journey, but we are fortunate that this journey began for us in a time in history when information is accessible and transferrable. Back in the day -- and when I say back in the day, I'm talking even a decade ago, but certainly beyond that -- it was almost impossible to figure out where to get the right information from, who you could trust, and how do you connect with all of these scientists and physicians and bring them all together. Now through the brilliance of technology and innovation, we're able to connect with people almost in real time and connect them with one another.
So, for me, the education began through the internet and just finding what was out there. Then when I identified some studies that had been done that mentioned the FOXG1 gene, I would simply send emails to the people who wrote the articles and say, "Hey, I want to introduce myself. I'm Scott Reich. My son Eli has this horrible condition FOXG1. I see that you've published on it. Can we have a conversation." And from there -- and in parallel, we were forming a nonprofit knowing we were going to be sponsoring research -- I was able to get in conversation with a lot of people.
One of the things that I'm proud to say is that the scientific community, perhaps more than any other community of which I've been part in a professional sense, is composed of the most generous, warm-hearted people that I've ever encountered in my life in terms of just willingness to help and often free of charge because somebody feels connected to a story or simply feels badly about the circumstances. These are people that get contacted a lot, and they keep opening up their calendars to make introductions that could be helpful.
So, once I got a general sense of what this FOXG1 gene does, and in parallel was recruiting members of our scientific advisory board, I was able to start developing a roadmap in conjunction with the scientists. I was asking for their input on proposals we were getting so that we could make sure they were scientifically vetted in the right ways. Over time -- because I probably have been on two or three thousand calls over the last three years -- you just start to pick it up, right? It's sort of the old “fake it till you make it.” I might be on a call and have to jot a note down so I could look it up later, or ask one of our scientists, "Hey, could you run that through with me one more time.” I’ve just gone through it humbly as a student and put to use the lawyer’s eye of diligence that has helped to define my other career.
Shiv Gaglani: Well, again, it's very impressive. Another commonality I think you have with people like John Crowley and David Fajgenbaum and others who've gone through that process --- you know, going from Google to scientific papers -- is something we're all about. One reason we're so focused on this is because ever since Osmosis joined Elsevier, we're now part of the company that publishes the most scientific studies and owns The Lancet and Cell and these great research publications. So, we're really excited about what we're going to be doing next year in terms of providing even more access to these rare disease articles so parents like yourself can get them all for free and connect with those researchers more easily. That's been a real big focus of ours, so it's good to hear that's how you went about doing it.
I just had a couple of last quick questions. Since Osmosis is a teaching company, one question we'd like to ask is, if you could teach anything to any group of people, what would it be and why?
Scott Reich: Well, I think there are some things that the field can do to improve access to information consistent with what Osmosis is looking to do. For example, a couple of things around publication of studies. The first is that most publications -- if you look carefully, and it's not going to take you long -- are talking about some advancement that was made, something that was discovered, something that was innovative and that's really valuable, of course, because we learn from one another new ways to think about other things and new ways to approach challenges. But one of the things that we don't see a lot of is publication of bad data. I don't mean where the experiment was done incorrectly or poorly, but where the experiments simply don't have the desired outcome. Because what I have learned in this journey so far, scientifically, is that we learn almost as much, if not more sometimes, from where we fail to help inform where we may be able to succeed.
So, I would love there to be more of a professional focus on basically when scientists have experiments that they've performed, but they don't want to submit them to the big publications because it didn't prove something that they wanted. Perhaps there's a way to still aggregate that information and share it with people with respect to specific genes or projects so that people don't replicate some of the same failures and can learn and save time and money to get us faster to the clinic. So that's one thing that I would love to sort of just say, to the world out there, can we figure out a way to do this?
The other thing is that, as generous as the scientific community is, one of the challenges is that a lot rides on publication, especially in the academic settings at universities. What that actually engenders is more competition. Now, when it comes to drug development, I like competition because it's pushing people to get to the clinic as fast as possible, it's pushing people to get their juices flowing and think about things creatively, and so forth. But sometimes there are instances where people may not want to share and be as forthcoming as they can be with information because they're saving something for a publication that may not come out for two years, and the rest of the field -- in whatever that disease or gene might be -- could actually benefit tremendously from that work.
So, I wish first that there was a way to speed up the publication process, but then I wish there was a way to make it so that scientists, in academic settings in particular, could feel more comfortable sharing credit for things so that it wasn't that their NIH grants or university funding are based on their publications because it creates a cycle that's not good for the patient at the end of the day, and for what we care about. All we care about is can we get to the clinic for as many diseases as possible, and given the technological, scientific and medical advances, things are possible. It's just a question of time, and so if we can cut out some of these obstacles that would be really fruitful and valuable for the field.
Shiv Gaglani: That's why we love to ask the question. It's very insightful and I appreciate you being able to share those so articulately. As you know, our audience comprises many current and future healthcare professionals so I'm curious what your advice is to them about being the best advocates they can be for parents and families with rare diseases?
Scott Reich: It's a great question, Shiv, and before I answer it, the first thing I want to say to people who fit into that profile is thank you. Thank you so much for going into this space and for caring about patients even before you meet them and their families. I mean, we need caring people who are going to be really educated and who are going to be really smart and compassionate. So, I'm really excited to continue having so many wonderful people entering this field.
I think in terms of advice, the first thing I would say is that nobody knows how anybody else feels, especially when you're confronted with such a dramatic and traumatic piece of information. And so the first bit of advice, obviously, is just be as compassionate as possible. We never use phrases, like, for example, "I know how you feel," right? Nobody knows how somebody else really feels. But there can be experience to share perhaps more than advice, meaning, you know, just be a little cautious with how you frame things.
Given that there are a lot of unknown diseases out there -- or just very ultra-rare diseases like FOXG1 -- I think it's important also for people to get informed as best they can when they're delivering information to impacted families. I wish that the journey would not really stop with diagnosis because oftentimes, the people who are delivering the diagnosis are in a position to actually help impacted families get settled with who the right physicians are, and perhaps connect them to Believe in a Cure. This is partly why we named the organization Believe in a Cure more generically, because as we progress and hopefully have a treatment or multiple treatments for FOXG1, we would like to create a platform that makes it easier for other rare disease families to be able to synthesize the information, take their diagnosis and learn how to take action to the extent that there are not other existing workstreams to push a treatment forward.
In other words, we would like to help cut down the timeframes for other people who are similarly situated. But at the end of the day, you know, I think that if people who are healthcare professionals can stay in the fight with the family and be a resource for helping guide them, not only medically but also scientifically, that can be really helpful and appreciated.
Shiv Gaglani: That's a great, great collection of advice. Hopefully, some of those listening to this will decide to spend a summer, spend a year, or spend a career working with families like yours on rare diseases like FOXG1. Before we let you go, Scott, is there anything else you want to get across to our audience about you, the foundation, how they can find it and how they can be helpful, etc?
Scott Reich: We would love and certainly invite people to visit our website, which is webelieveinacure.org. You can learn a little bit more about our story. We’ve been on the Today Show, we've been in People Magazine. Our story may not be so rare, after all, because of all of the rare disease groups that are out there. But at the same time, we are an ultra-rare disease and need as much support as we can garner. So, we welcome support in whatever way that could be. It could be financial. It could be volunteering in some way. We've got a number of different things. If there are people that are scientific or medically inclined, we also have ways for them to get involved in the organization and there's an email address on our website where we welcome hearing from the community.
So, at the end of the day, I just want to say thank you to you, Shiv, and for all the work that you and your team are doing. I think it's wonderful to raise awareness for all these conditions, as you well know and many of our listeners probably do, too. There are estimates of between 7,000-10,000 rare diseases out there, which is defined in the U.S. as fewer than 200,000 impacted people. That's a lot of diseases, and it impacts tens of millions of people. Between the people who are afflicted and the families who care for them, we're probably talking about over a quarter of the American population, and certainly the world population. So, rare may seem like "Oh, less common." But in aggregate, this is not less common. This is mainstream, and our community needs to continue to get the word out and we need to get as much support as possible to figure out ways to work together and advance our collective goals.
Shiv Gaglani: Absolutely, Scott. Well, I mean, it's the least we can do and we're looking forward to doing much more over the coming months and years. With that, Scott, thanks so much for taking the time to be with us today and more importantly, for the work that you, Ilissa and your foundation are doing on behalf of patients like Eli and many others around the world.
Scott Reich: Thank you. Thanks for having me.
Shiv Gaglani: And with that, I'm Shiv Gaglani. Thank you to our audience for checking out today's show, and remember to do your part to raise the line and strengthen our healthcare system. We're all in this together. Take care.