NY Launch Pod: Welcome to the New York Launch Pod, the New York Press Club, award-winning podcast highlighting the most interesting new startups, businesses and openings in the New York City area. I’m your host and New York attorney Hal Coopersmith. And in this episode, we speak to Scott Reich, founder of Believe in a Cure, a nonprofit organization that he and his wife Ilissa started to find a cure to FOXG1 syndrome. FOXG1 is a rare and debilitating neurological disorder, which is suffered by their son, Eli and Scott has an emotional story about how he started the nonprofit, what it means to be all in and what it’s like for him and his family to have been dealt a curveball in life. This is one of the most inspiring episodes that I think we’ve ever done for the New York Launch Pod. Here’s Scott.
Scott Reich: So the answer Hal is that we’ve opened ourselves up and it’s an uncomfortable position for me to be in and for my wife to be in, to ask for help. But what we have learned, especially in these crazy times of the pandemic and the world around us, that sometimes asking for help while it may be the hardest thing to do is sometimes the easiest thing for other people to get in the door.
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NY Launch Pod: So you started a foundation called Believe in a Cure. How did that come to be?
Scott Reich: It came to be, sort of, not by choice, but based on what was happening in the life of my family, my wife, Alyssa, and I have two children, our daughter, Amelia and our son Eli. And, unfortunately Eli was diagnosed with a very rare and severe brain disorder called FOXG1 Syndrome. Like the geneticist who gave us the diagnosis, most people have never heard of this indication. And that’s because of how rare it is. There’s fewer than a thousand people in the entire world who have been diagnosed with this condition, but it’s quite severe patients that suffer from this are often hospitalized for dangerous seizures. They are unable to walk or talk, and do things independently, like feed themselves or even sit up. And so my wife and I chose to convert our grief to action and decided that we would start a non-profit foundation to develop a treatment that could be made available for Eli and others like him suffering from FOXG1 syndrome so that we could, for lack of a better term in both the wonders of science and see if we can fix an accident of nature.
NY Launch Pod: And what is the goal of the foundation?
Scott Reich: The goal of the foundation, Hal I’d say is that we don’t want to exist one day. Cause that would signify that we’ve achieved our mission. The mission of the foundation is to develop an experimental and hopefully safe therapy that could be administered to patients suffering from this condition that will make their lives better. So what that means and what that looks like is something that only time will tell, but given how severe it is, if we could help people who are currently unable to walk or talk to do those things, that would be a giant leap forward. So the mission of our foundation is to work with other institutions, whether in academia or in industry to develop the right resources and know-how and drugs to actually have a treatment that can be administered.
NY Launch Pod: So you mentioned earlier that approximately 1000 or fewer people are afflicted with a similar type of condition. How are you getting people on board?
Scott Reich: Right now we’re living in the midst of a real scientific revolution, things that were previously thought to be sci-fi and impossible have actually become mainstream. And the ability to actually create and deliver successfully treatments for people suffering is happening now. And this is not just in the minds of academics or in labs. This is actually happening in the clinic. So the work that Believe in a Cure does, is primarily focused on doing this for FOXG1 syndrome. But what we’re also doing is helping advance the world of science so that the future, regardless of disease or diagnosis that a person receives, that there are methods and modalities that have been practiced and have been used in other settings that we can build upon. And so we view ourselves as we have a very focused mission on the condition that we’re dedicated to curing. And at the same time, we also recognize our role as a spoke in the bigger wheel of science and the progress that we hope to see as a field, because there are many other rare conditions and there are more common conditions that will be able to be treated by some of the modalities that we’re pursuing in our work.
NY Launch Pod: So that’s a wonderful goal. And how are you communicating that goal aside from saying, this is a disease for 1000 people, what we do has larger effects for the world?
Scott Reich: So right now there’s about 750 people who are known to have been diagnosed with FOXG1 worldwide. The likely number of people impacted is actually meaningfully higher. This condition was only identified in the last dozen or so years. And there are a lot of people who are misdiagnosed. There are people that have not been diagnosed. Part of it is access to genetic testing panels. Part of it is simply the age of an individual. If they’re older, if their genetic testing was done prior to the time when FOXG1 was identified, then they’re not going to have this diagnosis. So part of what we’re aiming to do is to make this available, make a treatment available to people because it’ll perhaps inspire some people who have very severe brain disorders or their family members to get fresh genetic testing, because they may be a treatment that could be available for them. So that’s one thing, but in terms of getting the word out to people, that’s the big challenge. The big challenge is that pharmaceutical companies have been doing incredible things for COVID and for a lot of other problems that afflict society. And at the same time, it’s not as commercially appealing for those companies to pursue rare disease solutions. And the reason is obvious. It costs a lot of money to develop novel drugs. And if there’s not a sufficient patient population to go purchase those drugs and use them, then it’s not a good value proposition. So part of what we do to get the word out is to try to connect with people who are focused on helping people that may have neurological conditions or other brain disorders. There are scientific links between the FOXG1 gene, which is the gene of significant interest to us, but there are links between this gene and Alzheimer’s disease, schizophrenia, brain tumors, and the FOXG1 syndrome itself is on the autism spectrum. So it’s believed by many scientists that if we can figure out a way to regulate the expression of this gene, if we can figure out a way to fix it, you know, the protein expression that these kids suffer from then that would be translatable potentially to a number of other diseases. And so part of what we’ve tried to do is connect the smallness of our community with the largeness of the goals that the scientific community has around these more common afflictions.
NY Launch Pod: How are you able to make those connections? Do you have any examples of how you’ve been able to make a connection, which has helped out your smaller community?
Scott Reich: Well, we’re doing the launch pod right here. We’re hopeful that, you know, some folks will check out our website and learn more, which is www.weblieveinacure.org, but Hal it’s really through networking and relying on family and friends to introduce us to others who may think may be helpful. So in some instances it may simply be sharing a link to our website and asking someone to support what we do. In other instances, it may be connecting us with scientists who may be interested in this space or connecting us with philanthropists or connecting us with universities that are focused on rare disease in some capacity. So the answer is we’re all in, and therefore we will take any introduction that gets made and we have to be relentless. There’s only one way to attack a rare disease and that’s to be fierce. And so we are constantly looking to meet new people and connect with other foundations and do whatever we can to advance the goals as quickly as possible.
NY Launch Pod: So you talked about this from the outset, but you mentioned how you converted your grief into starting this foundation. A lot of people have not done that. What motivated you in terms of starting this? Because obviously we know what the motivation is, but how did you translate that into starting this organization?
Scott Reich: I’d say there are a few pieces to that. One is that as horrible as this experience has been. And despite the fact that I was certainly not a science kid, when I was growing up, I find advances in science to be incredibly fascinating and intellectually stirring. So there is not just the emotional ties that are obvious, but also an intellectual one that draws me to the space. The other is that, listen, everyone deals with grief and challenge and problems in their own ways. And I’m a believer that there are no right or wrong ways that are universal. It’s what works for each person in each situation. When we got the diagnosis, we were completely devastated. As you might expect to be told that our infant son was never going to walk or talk or have any kind of productive life. And my immediate reaction was that that can’t be the case just simply can’t be the case. And it wasn’t a point that I wasn’t believing the diagnosis. Of course I believed it, but it was more that I was unwilling to accept the outcome that we were being told the prognosis. And so Alyssa and I spent a lot of time talking about what we thought we could do as parents. And when we asked some of the physicians, what we should do, we were told simply, why don’t you go home and love your son? And we kind of scoffed at that. And of course we love our son. Of course, we’re going to give him the best life possible for us. We only had the motivation, but we felt that we had the ability to build community and create a platform for attacking this. And so we tried to be as methodical and logical as possible. The emotions drive a lot of what we do, but we have to be unemotional in how we actually pursue the business angles of getting a foundation off the ground and deciding to sponsor research, leading institutions and focused on developing a cure. So we kind of looked around at what research was going on, and we felt that there was an opportunity for us to contribute to the field. And we’ve always been big believers that when you can bring people together and unite a community, when you work with people from all walks of life, whether or not they’re impacted by the challenge that that impacts you, that we’re stronger together. And so we felt why don’t we create a nonprofit foundation and get our friends and family and anybody who wants to be part of it to feel that they’re connected to us in our mission and help make it their own
NY Launch Pod: It’s phenomenal. And what you’ve done is not just create a foundation you’ve involved. A lot of other people, you have an incredible board of advisors. It includes Kenneth Feinberg, who was the 9/11 trustee. You have Joseph Lieberman, you have other politicians. How are you able to get all these people involved?
Scott Reich: Well, it’s been a lot through personal friendships. I’ve been fortunate to know a number of public servants and others who have been influential in different walks of life. And we approach the problem here, as not only a scientific one, but really an organizational one. How do we get people to care about something that they may not otherwise care about? And so I’ve reached out to some of these friends and asked if they would be involved and participate in some fashion. And, you know, some of them are financially supportive. Some make introductions for us, everyone wants to help. And so we’ve been really blessed and humbled frankly by the amount of support that we’ve been given by people. And when you’re fortunate to connect with people who may be in a position to influence the outcome of our mission, it’s our responsibility to try to figure out how we can get them in our orbit and feel engaged in our work. So in terms of how we’ve gone about this, we’ve simply connected on a human level with people who care about helping people in need. And as I’ve said, rare disease as a category is very difficult to attract support because people don’t feel as much of a personal connection. If I said, for example, you know, raising money for let’s say cancer, some terrible form of cancer. There’s a decent likelihood that people have not only heard of it, but that they may know somebody who’s been touched by something that’s more common. I mean, my family has been touched. I think most families have been touched when you say FOXG1 syndrome. No one really knows. And so I think part of the generosity of spirit that we’ve been fortunate to receive from people is that they want to help us elevate the cause and to lend their stature to it and help us by making introductions and, you know, being part of our team.
NY Launch Pod: And how are you building momentum? Obviously, you’re getting the name out there and you’re growing a community from essentially your own network. How are you able to grow and in the future sustain that?
Scott Reich: Yes. As grassroots as possible. So this has been word of mouth. This has been individual outreach to people. I personally try to email and speak with as many people as possible. And I think that one of the ways that we’ve been fortunate to have some success in fundraising and bringing people together has been embracing our vulnerability. It’s not an easy thing to talk about this. It’s not an easy thing to deal with a future that is full of heartache. And, you know, it took us several months after the diagnosis that we received to even share it with very close people in our lives. It was just too emotionally raw, too difficult and raw. So the answer Hal is that we’ve opened ourselves up and it’s an uncomfortable position for me to be in and for my wife to be in, to ask for help. But what we have learned, especially in these crazy times of the pandemic and in the world around us, that sometimes asking for help while it may be the hardest thing to do is sometimes the easiest thing for other people to get in the door with. In other words, sometimes it really is as simple as saying to someone, can you please help me? And at the end of the day, we all have different challenges of varying scope and depth and circumstances. But we are united by our common humanity. And by the notion that we recognize in one another, where there is truth, where there is pain, where there’s love and compassion. And I think that people are genuinely good. And when they hear that someone is suffering and that there’s an opportunity to help our job is simply to make the ask and I’m oversimplifying it because it’s not easy. It’s very emotional, it’s challenging to do, but there are good people who want to help. And, you know, we’ve tried to do that in other instances where somebody else needs help from us. And we’re in a position where we’re asking for help along the way here.
NY Launch Pod: So you mentioned you are grassroots and you’re asking for help. What have you found to be the most effective ways in terms of getting involvement?
Scott Reich: Personal solicitations and asks. I think that one thing that has inspired me throughout my life is the non-partisan political message of service that many of our leaders have embraced over time. One of my political heroes is President Kennedy, who famously said in his inaugural address, that we should not be asking what our country can do for us. Instead, we should be asking what we can do for our country. And I’ve always paused on the word, ask there, because he was literally asking Americans to evaluate what they could do to make society better. How individuals respond to that call is different. It’s personal. Each individual can go about their business, however they may want. But I think that what our society is strongest at is when there is a specific ask of somebody I think people want to be asked to help. And frankly, I think that’s one of the things that’s been absent in our political discourse. In some respects, we’re so busy yelling at each other and focusing on which cable networks somebody watches or who they supported in the last election. And instead we ought to be focusing on coalescing around areas of common interest and certainly healthcare and science and medicine should be something that we all feel an interest in, because I can tell you what, when we got this diagnosis, nobody came to our door and asked us what shows we watch or who we voted for, or who we love, or what our faith is or where we come from or hope to go. These things strike at random. So I think that that’s, to my earlier point about our common humanity, we need to be asking people to connect on a personal level. So part of our efforts really is simply to put ourselves out there. And as I said, embrace our vulnerability so that we can be in a position to receive the help that we’ve been fortunate to be given to us.
NY Launch Pod: What has all this meant to you from the beginning to now, what has that experience been for you and your family?
Scott Reich: A rollercoaster, because at the same time that we’re focusing on the work of the foundation, we’re also focusing on raising a family and a family that has significant, special needs that has a lot of dimensions to it for a lot of reasons that I’m sure people can imagine. So it’s been a roller coaster and at the same time, it’s been exhilarating in an odd way because I would give anything to not be in the position that we are in, you know, that we have to deal with this, but now that we’re here, I see how much good there is in society. And how many people are genuine about seeking to lend a hand. I’ve encountered this in the scientific world, scientists who in many instances for no charge, want to be helpful and maybe want to do some research on me and their existing lab budgets. There are people who simply volunteer on the scientific side to say, let me help analyze some of the data and design some of the experiments. There are individuals, of course, who are very philanthropic. There are people who dropped dinner at our door, and that makes as big of a difference for us to know that there are people who care. And so we’ve been very touched by the notion that we feel connected to people and we feel blessed in that regard. Again, we would do anything not to be in these circumstances, but we’ve been very moved and humbled by the amount of generosity that exists and that we’re fortunate to receive. So for me, I try not to focus there. There’s too much negativity to focus on. There’s too much sadness to focus on and tragedy because if I get too focused on, you know, what’s my life going to be like and my son’s life and my family’s life in six months and five years and 10 years, 50 years, we lose a piece of the present and the clock is ticking on our work. So we literally don’t have the time to afford to focus on the bad things. And, so if anything, this experience has converted me into an optimist, in every respect, because I believe that there’s opportunities to correct the accidents of nature. I believe that there are ways that we can contribute to society in ways that may be unexpected. And, I feel that we have the power to make a difference, especially when we work together.
NY Launch Pod: Well, that is a wonderful note to end things on. And in terms of connection, how do people connect with you and Believe in a Cure?
Scott Reich: Sure. So, they can go to our website, www.webelieveinacure.org. We have, an email address there that you can reach out on. And there’s more information about the work that we’re doing and what we’re pursuing. And as we note on the website, we invite the participation of anybody who shares our commitment to trying to develop a treatment for this horrible condition. And if we’re fortunate one day to expand our work to other diseases as well, because as I noted earlier, we’re focused on creating a platform that’s going to be powerful enough that we can be part of a movement to advance the field forward so that other people who get impacted in the future will have an easier path forward.
NY Launch Pod: Thank you for stepping onto the New York Launch Pod and sharing your time
Scott Reich: Hal great to be with you. Thanks for having me.
NY Launch Pod: And if you want to learn more about the New York Launch Pod, you can visit nylaunchpod.com for transcripts of every episode, including this one. And you can follow us on social media@nylaunchpod. And if you are a super fan of the podcast, Scott, are you a super fan of the New York Launch Pod?
Scott Reich: Yes.
NY Launch Pod: If you’re a super fan like Scott, please leave a review on Apple Podcasts. It is greatly appreciated and does help people discover the show.
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