S6E3: Sandra Abrevaya and Her Husband Brian Are Making the Battle Against A.L.S. More Accessible to the Public
31 May 2022 · 40 min
In this episode of The Room Podcast, hosts Claudia Laurie (co‑CEO of Pryve) and Madison McIlwain (partner at Defy VC) interview Sandra Abrevaya, CEO and co‑founder of SynaptiCure, about her personal and professional journey that led to the creation of a mission‑driven health startup focused on ALS. Sandra recounts her early career in political communications and the White House, drawing parallels between the uncertainty of politics and startup building. She describes how her husband Brian Wallach’s ALS diagnosis sparked the founding of the nonprofit I Am ALS, which generated $100 million annually in research funding, and later the for‑profit SynaptiCure. The conversation explores the fragmented ALS care landscape, the need for genetic testing, care coordination, and tele‑neurology, and how SynaptiCure’s product suite aims to democratize access to cutting‑edge therapies and clinical trials. Sandra discusses fundraising ($6 million raised from investors such as GV, Life Force, and Ron Conway), the importance of a diverse investor syndicate, and the challenges of building a company in a highly regulated, resistant healthcare ecosystem. She offers advice for mission‑driven founders, especially those working with a spouse, and reflects on how COVID‑19 accelerated telemedicine adoption for ALS patients. The episode closes with updates on SynaptiCure’s nationwide launch, upcoming telenurology expansion, and resources for listeners affected by ALS.
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Welcome back to another episode of The Room Podcast. We are so excited to share in particular today's conversation. Today's guest is truly the embodiment of what it means to break down barriers and build for a better future. Today we sit down with Sandra Obreyeva of SynaptiCure. Synapticure seeks to fill in the gaps in care and research for those with ALS. Must start by Sandra and Brian Wallach, partners in life and now co-founders. Synapticure is on the mission to leverage telemedicine and data aggregation to help ALS patients and researchers deal with challenges caused by the disease's rapid progression. On today's episode, we discuss Sandra and Brian's journey of understanding ALS and treatment options, Synapticure's core product and what it unlocks for patients and their families, and what it means to fund and build a mission-driven startup. Let's open the door.
Before we dive into your founding story of SynaptiCure, we'd love to start at the beginning. You went to UMich for undergrad and spent your early career as communications director at the House of Representatives, then as a press secretary for Senator Durbin, and then a press secretary at the U.S. Department of Education. In 2012, you went to law school at Northwestern. Very different early career path from where you are today. I would love for you to tell us more about this time of your life and what took you to law school.
I started out after college actually in a really entrepreneurial space. That space is politics. Even before serving as a press secretary to a congressman and then a senator and cabinet secretary, I was on the presidential primary campaigns of 2000 2 and 3, so I was a Howard Dean campaign staffer just a year or so out of college. And certainly it is very much an environment where you create something out of nothing. You work 24/7 and you feel really mission motivated and build the plane as you fly it, so to speak. So there's a lot of similarities in both the work itself of political campaigns and also the kind of person who enjoys creating in spaces of uncertainty and taking risks. And everything that accompanies that. So I really enjoyed the first political campaign that I was on, even though we lost. Howard Dean did not become president. In fact, neither did John Kerry, who was ultimately the Democratic candidate that year. So I basically lost twice and then picked myself back up and said, I actually want to keep working in this field, which is why after that campaign season, I moved out to Washington, DC.
The threads between politics and entrepreneurship, we've heard echo a few times with past guests on this podcast and as a founder, you're building for such a long period of time and ultimately the outcome is incredibly uncertain. And sometimes there's forces that like are out of your control. You've tried as hard as you can and it might not shake out the way that you expected. Such a direct parallel to politics. So with that, what do you think your top 3 takeaways were from that period of your career that you now bring with you as an entrepreneur?
One of my takeaways is what kind of environments I thrive in, and I think that's important. And it turns out that I really enjoyed working and navigating in areas of uncertainty and being able to be creative and build. Even in addition to the experience on political campaigns, I think a lot of that experience translated into working in government, which sounds probably funny because you think of government as like super bureaucratic and state and not creative and entrepreneurial, but in fact, when I went to work for a congressman, I was the press secretary to a new member of Congress. So we built a team from scratch. We built systems of operating from scratch. We had to build his reputation in the community from scratch. I built in that environment and really enjoyed it. And then ultimately, even when I went and served as associate communications director at the White House, the White House itself is reinvented every time there is a new president. One of the reasons I was recruited from my role as press secretary at the Department of Education over to the White House is because they created a new role called associate communications director. And they said, we have learned some things in the first couple years of the White House under President Obama that are working and not working, and we actually need some improved processes and systems for the communications team to operate under, and we need someone to manage that. So that's actually— they created a role and then they asked me to come over from the Department of Education to drive that work. And in that role, I was not interfacing with media, I wasn't driving stories, I was actually creating process and infrastructure that would make the White House Communications Office run more smoothly.
I'm just like in awe of the parallels, because I think there's just so much we don't really draw comparisons to between politics and startups. But hearing you say processes that we invented, I'm like, yep, that's a startup.
Especially as you're scaling a startup, it's like, how do you create systems and repeatable processes in place after you've built something from nothing and how do you continue to iterate on things that might have worked well 6 months ago, but are outdated. And in many ways, that's the equivalent to the Obama administration and what worked really well day one is something that's completely different after year 2.
So, yeah, it's like just as you scale a startup, you scale a White House. And as the team grows and the work grows and the body of work over time builds, you need to become more sophisticated and more thoughtful in the way you communicate and operate internally.
To take the parallel one step further, the president actually only had 100 days to get their name out there, because I feel like that first 100 days is what so many people refer to as a moment to really hit it.
At least a startup has usually like 365 days to get there.
Yeah. And then also just like in a startup, you have maybe inflection points or moments of reinvention. You have that as well in a government startup like a White House. So When I transitioned over to the White House Press Office, a lot of what we were experiencing was just a partisan divide and the difficulty of passing legislation given that partisan divide. And so I, alongside Nancy DeParle, who was both senior at HHS and then was one of my bosses at the White House, we started and orchestrated the We Can't Wait campaign, which was a series of presidential executive actions that we could move forward without Congress aligning on legislation so that we could show the public that even though there was a partisan divide and a gridlock to some extent on bills and legislation, that we could still drive forward meaningful policies and progress for the American people through executive actions. And so that was really wonderful. And I do wonder whether Nancy DeParle's experience in the healthcare startup world helped inform what she did and, and taught me to do in the White House.
We were chatting about these threads between time in government and startups, and it's hinting at your role today. You are now the CEO and founder of SynaptiCure on the mission to cure ALS. Tell us, before we dive into the story around founding SynaptiCure, did you ever think you were going to become a founder?
I certainly didn't think I would end up in the healthcare space. My parents are both research scientists, PhD scientists. My mom has a senior role at Abbott Molecular, and my father is in exploratory research in clean energy. So I have a molecular biologist and a chemical engineer, and research science was my whole environment growing up, and I wanted to stay pretty far away from that as a result. So here I am, obviously because of Brian's diagnosis with ALS, and then just wanting to leverage every sort of skill set and asset and connection we had to drive forward real progress in the sector. I think I was always entrepreneurial, but I wasn't necessarily interested interested in pursuing a career in healthcare. Also probably because I thought, well, I filled pipettes in the lab with my mom on days off from school, and I'm not particularly good at lab science, like it's not my thing, and I'm a little bit afraid of needles and blood, so I'm not going to be a doctor. Growing up, you think, oh, I'm not going to be a lab scientist and I'm not going to be a doctor, so I'm not really going to pursue a career in healthcare, because you don't think, what about the healthcare startup world, right? That's not something that anyone came in, at least when I was growing up, to career day and told me was a possible path.
You're hinting about the founding story behind SynaptiCure, but starting SynaptiCure stemmed from a deeply personally felt experience. Tell us about your husband and co-founder Brian's journey with ALS and how that ultimately led to starting SynaptiCure.
Brian and I were in our mid-30s. I had convinced him to move to my hometown of Chicago. He's a weirdo DC kid born and raised. It's like hard to find those folks. And Brian was very steeped in the DC East Coast world, and I convinced him to come here to Chicago, but we were having a great time. We had great jobs. I was actually the CEO of an education nonprofit that is about, to some extent, like crowdsourcing innovative ideas in the education sector. So it was very aligned and I can share more about that. But Brian was basically prosecuting gangs and violent crimes in Chicago as an Assistant United States Attorney, which was his dream job. And we had a 2-year-old and then we came home from the hospital with our second daughter, and that was the day that Brian was told that he very likely had ALS. And at that moment, the doctor communicated to him that he could have as short as 6 months left to live. We're just like, no family history. Brian's left hand was experiencing some weakness, some cramping, and it would— it never occurred to us that symptoms as seemingly benign as this would result in essentially a death sentence for a couple of 37-year-olds. It was just unthinkable. So we obviously had a lot of time of processing grief and shock, and for some time we just flew around the country trying to confirm and clarify the diagnosis because it's not a straightforward illness to diagnose. And ultimately, Brian started to try to understand what was going on in the sector and why more progress hadn't been made. He came to me and he said, these are the things I've learned about what's working and what's not in the ALS sector and why it's trailing by behind oncology in many ways. But I think there's a lot we can do, especially with what you and I know how to do and the people we know. And so I'd like to start an ALS nonprofit. And at the time I had been CEO of an education nonprofit, which I started from scratch. I was the founding CEO and I was 5 years into that. And then before that I was the founding Chicago executive director of a different education nonprofit. So I had been founding ED of two education nonprofits. I knew how all-consuming the work was, and basically I said, "Hell no." So I didn't want to take on all that work, even though I appreciated what Brian was saying. So he wore me down, and eventually we did co-found I Am ALS, which is the nonprofit that has now just recently turned 3 years old, and has achieved such remarkable things that Brian regularly says to me, "Aren't you glad that you listened to me? And let's talk again about how you were wrong and I was right." And I give in and I do acknowledge that it was the right thing to do. But leading up to SynaptiCure, what was an important learning for us was that IMLS as a nonprofit advocacy organization was able to do remarkable things, generating an additional $100 million annually in research spending for ALS. So think about the Ice Bucket Challenge. That's the most well-known medical fundraiser in history as a viral moment, generated $100 million in the U.S. What I Am ALS has done has generated $100 million every year. So it's essentially like a silent ice bucket moment happening now year over year. And Brian himself, alongside two members of Congress, crafted legislation that gets patients access to therapies faster through an expanded access program. And the bill became law, and President Biden signed it into law in December. And so all of those accomplishments are far beyond my wildest dreams, and none of those things or skill sets that IMLS has can fully transform the care system that ALS patients experience today. Which is very much broken, not unlike many other care experiences in neurology. And so we began to think deeply about how a healthcare company could tackle those challenges head-on, and that is how SynaptiCure came to be.
I'm struggling with how to personally process everything that you just shared from the devastating experience of hearing that diagnosis the day your sweet child is coming home from the hospital, turning that devastation into hope to be able to help so many other families. So just first off, I just wanted to say thank you so much for having the strength and tenacity to turn that moment for your family into a space that helps others. Oh my gosh, I'm getting a little emotional because I just think that's so powerful. And if everyone did that, I just think our world would be a better place. So Thank you for that. And the balance of taking a personal experience that is so interwoven with your family and your life and turning it into a nonprofit is one that put a lot of strain alongside other strains with your relationship. But you didn't stop there. Taking it from being a personal journey to one with I Am ALS to Snapature is incredible. So taking a step back, I think a lot of our listeners probably did the ice bucket challenge, have heard of ALS in the media, perhaps unfortunately have a family member who has struggled with it. Would you just give us a little bit more context to the treatment options available today? Because it sounds like you have both had to go through the journey of understanding the reams of research papers, and it seems like an insurmountable task just to understand what the road ahead is. So if you could just orient us around the traditional path for today.
When Brian and I were diagnosed, we saw the best doctors. We had the privilege of being introduced to those physicians and getting appointments quickly. And even with all that privilege, we were essentially told, "I'm sorry, but I can't help you. You should just travel, eat whatever you want, and prepare to die." That was That's what we heard and that's what most ALS families hear. And that was 5 years ago. So much has changed, but what we're telling patients and how we're supporting them to navigate a way out of this has not changed. So to your point, we did take on the burden of researching everything. Okay, maybe there's not a ton of FDA-approved medications, but are there early studies that maybe in a phase 2, even if it's a small study, maybe it's in Italy, maybe it's showing that like for 15 people, It helps slow it down by a year. You know, anything we could do or find to create our own personalized plan to slow the disease down so that Brian could be here long enough to benefit from the day on which more therapies and potentially curative therapies came to be. So I think that combination of How Brian and I felt like the process of navigating care was its own version of hell on top of being given a death sentence really motivated us to launch SynaptiCure. And so with SynaptiCure, we're really working to bring, first of all, that sense of hope to patients that is grounded in the huge advances that the bench science has made. That isn't yet translating into your typical clinical experience. To be really concrete about it, the number of genetic variants that are now associated with ALS has grown from maybe 5, 10 years ago to over 50. And there are another 100 genetic variants that are being studied now to really hone in on whether they have a relationship to ALS. And so Why is that important? It's really critical because some of the most promising therapies for ALS that are under development today are the ones that target specific genetic subtypes or genetic variants of ALS. The more we can understand about each patient's genetic makeup and simultaneously support biopharma to create targeted therapies, the faster we're going to make progress. For this disease that is so heterogeneous. Brian and I want to accelerate the rate at which all advances are accessible to patients so that it doesn't require a family like ours where you have two research scientists for parents who understand how to interpret data and clinical trials. And my parents flew around the world to every international ALS symposium. I mean, Who has that, right? That's unattainable. So how do we democratize care and bring that level of sophistication and accessibility of care and options to every ALS patient?
So much goodness.
I don't even know where to go next.
I think from an investment standpoint, we talk a lot about founder-market fit. And just as you're talking, I just hear so much resonance with this unique situation you were put in and from a family perspective, but then the blessing of access that you had with your parents to open some of these doors that others would not have been able to open in your situation. And you're really changing the status quo through what you're building now with Synaptature. In that vein, other kind of healthcare status quos have been changing at an increasingly rapid pace, particularly with the mRNA vaccine. COVID has brought the concept of proteins and how you can understand your proteins versus your standard DNA from a genetic perspective to the forefront of a lot of conversations. I was a history major, so I'm not super sophisticated on this topic, but curious about just in the ALS world, how the work going into protein mapping is impacting you.
It's critical. In fact, there are certain antisense oligonucleotides that are not only being leveraged to address genetic variant subtypes of ALS, but also to address mislocalization of TDP-43 and protein pathway issues. And the field is getting really sophisticated quickly about all the ways in which we can use ASOs and AAVs and think about this in a far more strategic way than we have in the past, where it was like all small molecule drugs and every trial was a generic blanket assessment of this should work for every ALS patient. But now we really see ALS for what it is, which is many different subtypes of a similar disease, but ones that need to be potentially treated differently. There's probably no one therapy that's going to work alone to stop someone's ALS or even reverse it. And this— the sophistication of our understanding of what it will take and how to go about it has improved so much over the last several years.
That's incredibly exciting to hear. And the Silicon Valley ecosystem is noticing. You've raised over $6 million to chip away at this mission of unlocking better access and forefront care for all from partners like Google Ventures and other Silicon Valley icons like Ron Conway. Who was the first person to say yes to you?
I don't know if you guys probably recall some version of your own seed fundraising experiences. Like it was a little bit of blur and then I think I like blacked out like all the details. I was like, oh, I don't want to do that again. No, we were really fortunate to do it quickly. But I don't know that I can with fidelity recall it. I don't want to mistake who was first, but I think one thing that was important to Brian and I was we actually approached it a little bit more like a syndicate and had a lot of different, really smart people at the table because we wanted folks who knew everything about precision medicine and oncology and how to aggregate datasets. To then partner potentially with biopharma to help vastly accelerate the rate at which they can develop targeted therapies. We wanted people who were expert in telemed and helping to assess value-based care and health systems. We wanted ALS expertise in addition to our own. And so for us, it was important and exciting that we were able to diversify the investor group and bring in folks from Google Ventures and Life Force and Martin Ventures and just individuals and entities that had all those different skill sets and areas of expertise. Because ultimately, again, like you probably know, it's the resources are important, but who you have on your team and their brainpower, especially when you are a small company, is just as important.
You're in the middle of this incredibly complex ecosystem that is both bureaucratic and somewhat sometimes self-interested and has long timelines. That don't adhere to the needs of the patients. There are thankfully a lot of other people like you who are willing to take on solving some of these problems more so in the private sector, but it is a challenging one. What would be advice that you would give to a founder who similarly is looking to build a mission-driven first startup?
First, I wanna speak to the complexity of it. One thing that has helped me that Brian does so well for me as co-founders is he always reminds me that we should expect people to resist who are a part of the entrenched way of doing things because it seems, you know, obvious, but it would exist if people weren't entrenched in the old way of doing things. But then when you experience some pushback from traditional players or those people who stand to benefit from the old way of doing things, it's hard to keep that at the forefront and remember that. And so it's almost helpful to use that as a rallying cry, right? Like, it's good we're getting pushback from some of these school players because that means that we're doing something that is transformative and that is hard to do, that we know how to do, that no one's tried to do before, right? Using the resistance as a thing of inspiration, at least like psychologically, helps me. That's been a useful way for me to just keep on pushing on when you hit roadblocks with the current health system and the way that things work today.
What's really interesting with your path is that it's life or death, right? We sometimes startups talk about like hair on fire problems, but that's often like business-related problems. You're really solving something that cuts a little bit deeper there. And so more specifically, what are some of those unique challenges in building as you're standing up kind of the company and building product and getting it into the hands of customers?
I want to speak to the thing that you said first, which was that people want to solve like hair on fire problems, but sometimes those are like business problems. So I guess I also have the benefit of having a death sentence of a disease. And so whenever anything seems stressful, maybe to the normal person who's not experiencing a death sentence, like, it's actually not that big of a deal, people. I think that also helps us because we're like, we have ALS, so that doesn't scare us. It doesn't stress us out.
And when I hear people's interviews where they're like, oh my gosh, and then this like business deal like almost didn't go through and it was like a life or death moment.
I'm like, no, it wasn't. No, it wasn't. You've never been through a life or death moment. I can assure you, you would never compare that IPO to a life or death moment if you've actually been facing a terminal illness. Anyway, I know that wasn't completely where you were looking for that question to go, but I think more concretely, what was so important to Brian and I is that patients get more of what they need, and they need two things, right? They need access to ALS clinics, and they need clinic care or that ALS specialty care to be leveled up in a lot of ways. So when there are some really traditional players in the health systems today who won't admit it, they'll be like, oh, my clinic is full. I don't have any problems seeing people. And then I show them the data that shows that for more than 50% of people with ALS, they're not getting consistent ALS specialty care for a lot of reasons. They're not geographically convenient for people. These clinics often have long wait lists. It's just onerous to get there. And sometimes general neurologists and PCPs are even discouraging patients from pursuing it because they don't know how far the bench science has come. So they're telling people it's not worth it. But if I told you that half of cancer patients never see an oncologist, you would tell me that was unreal. And that's really what we're seeing in ALS today. That has been a concrete area of pushback from some more traditional players, although we're also very fortunate to have a lot of really progressive, forward-thinking clinicians on our team and advising us who see the problems of access for what they are. I think now that second area of need, which is that the standard of care really needs to be leveled up. I mean, one thing that Brian and I felt so acutely in our own experience was that after being given this death sentence, we were then told there's two FDA-approved drugs and that's it. And there's some clinical trials out there and you can poke around and let us know if you want to enroll in one. But what Brian and I needed and expected at the time was that we would get really hands-on clinical trial decision-making support that would take into account however we could sort of identify Brian's type of ALS and then match it to the best clinical trial. It's a real disservice to patients to not immediately hone in on what is your ALS, how does that best match to the existing clinical trials, Yes, it's no guarantee, obviously, but there are no other options. So for ALS patients today, clinical trials are your only real avenue to therapy. So when the clinician community doesn't take that need seriously enough, patients feel abandoned.
And I'm hearing that piece of the journey Synaptic steps in. Could you walk us through how you interface with patients and how you're there as a support during this need-finding process? Process of patients.
For every patient, we offer a care coordination experience, and that is an inclusive experience. We've got continuity of care support. We relieve the administrative burden on patients. We help them organize via our product their medical records, make sure that they understand what the next steps are in their journey, and then offer them the most comprehensive genetic testing opportunities. Genetic counseling. These are two things that are not being done universally that SynaptiCure patients do as part of the routine process. And then if they aren't seeing an ALS specialist, we have been linking arms with the top ALS clinics and getting people in. So you don't have to know somebody or have a connection. You just have to be a SynaptiCure patient, and then you're going to get an appointment at one of these top ALS clinics. Now, what we are beginning to layer in at this moment in time is, in addition to all these care coordination supports, We are bringing in our own telenurologists. So we have a covered entity, Care MD. We're going to have our own physician group building out. So what's really exciting about that is that in addition to being able to bring into your care team some of these ALS clinic brick-and-mortar specialists, we're going to be able to give patients more of what they need, which is more time in telemed appointments with physicians. Today, you get to really see those ALS specialists once every 3 or 4 months. When you've been given like 2 to 5 years to live, you typically want to see someone more regularly. You're not like, oh, that's cool. I'll check in 6 months if I'm alive. That's the way, as ridiculous as it sounds, that the current system is set up. So that is now our real focus is building out on top of the care coordination supports and offerings and services, the telenurology.
The past year in COVID, I'm sure telenurology, telemedicine more broadly has has been adopted significantly. So could you tell us how the world of COVID has really accelerated this part of your roadmap?
Patients and clinicians alike are more open to telemedicine, obviously, than they were in the past. But I will say ALS patients are number one, if not tied for first place with any patient who would actually need telemedicine because the disease itself completely disables you limb by limb. You first lose the ability, depending on your progression, like to walk, then to move your arms, then to move your hands, then to move your fingers, then to speak. I mean, it literally destroys you limb by limb, month in over month out. So how in the world are people who are facing that kind of deterioration physically supposed to be getting in a car or an airplane and going to appointments? And I hear all the time that patients are just skipping their ALS clinic days because they basically have been told there's no hope. They're so disabled that what's the motivation to even physically make it to an appointment? So they're just completely skipping visits at all. So the ALS community desperately needs this to be a primary avenue for care for so many reasons, paramount among them what they face physically.
It's incredible to see that from those firsthand experiences of deeply understanding the need that you're able to build a business and support for those specific needs. It's not force-fitting a solution onto a problem where you don't understand exactly what it's like to go through that day to day.
I say to Brian, unless we had to do this, there's no way I want to do this. It almost feels like it would be inappropriate for us to not leverage everything we know, the fact that we're still alive and functioning pretty well 5 years in, the network we have, the assets we have in our corner. If we walk away from the problem knowing as much as we do, it's a huge disservice to the work. And so that is how we are motivated. I don't want to wait another 50 years for another patient to come along like us who has those assets and just hopefully they decide to take the reins.
I'd love to dive a little bit deeper into your journey with Brian more specifically. Specifically. Not only are you partners in life, but you're also partners on this company-building journey and seeking of truth and progress. I'm personally also co-founders with my partner, and I think a lot of folks want advice around what it's like to work with their significant other, but also in a business capacity. So would love to get your, your insights on what that journey has been like and what advice you'd give for other founders who looking to start something with their significant other.
Brian and I met working together, so that was the entrée into our relationship. In 2008, I pulled up to a park field in Manchester, New Hampshire, and I was the communications director for the Obama-Biden general campaign for the first presidential campaign after he'd won the primary. And Brian was the political director for the state of New Hampshire. So It was literally our job to work together because what a communications director's job is at that point is the candidate's going to be spread thin around the country. So you're going to have to use surrogates to speak on behalf of the campaign. And who are those surrogates? Every state representative, state senator, congressman. And that was Brian's cohort. That was his relationship base. Basically, my whole job was to get Brian's people on TV and in print. And so it was from day one, we had to work hand in hand. And then when we went over to the White House, people would joke that we'd be on a date when we would take a walk through the hallways of the EOB together, like, as a sounding board. We then worked in different departments. He was a White House lawyer, I was a White House comms person, so we worked less closely together at that point. But I don't know, I think it's really hard to work with your significant other. And I think Brian and I are probably a little bit different because we met in that way. Our whole kind of history is embedded in working together. Maybe that's like why we fell in love, because we're like, oh, you're like smart and capable. I respect that. And that's attractive to me. And of course, knowing what your strengths are and what your partner's strengths and weaknesses are is key too.
Totally. No, similar. Like my co-founder and partner, we started working together at Uber and then found ourselves on this journey.
I just am loving the stories here.
It's so fun. And I don't work with my boy, my partner, but I, uh, I don't know if we we would actually work well together, but we didn't meet working together. So there you go. Maybe that's the thesis here. If you meet working together, you can work together for a longer term.
Possibly. I don't know.
I say this on behalf of both Claudia and myself. We're so glad to hear that Brian is still healthy relative to that diagnosis 5 years ago, and it's given you this path and this mission to serve so many more ALS patients and families. We're incredibly excited that you have a long road ahead of you both and with this company. Would you mind sharing a little bit more about what's next for Snapature?
It was really exciting to have our big public launch moment where we went from the group of pilot patients we were working with to basically opening enrollment nationwide. And the New York Times story on the front page of the business section certainly made that an especially powerful and exciting moment. But then, you know, once we had launched and have been able to enroll patients at a very fast clip. I think Brian and I are just really now heads down building the business, bringing on and building out that telenurology team that I mentioned to build out the services to layer on top of that care coordination team. So for us, it's really now about iterating on the care experience over and over again and just really Feeling great about that over the next several months. And obviously there's always room for improvement, but it's the part of the job, obviously, that we love the most because it's why we got into this. So this is a fun time for us to just be super heads down building.
And if any of our listeners are unfortunately finding themselves in a situation where someone they love is dealing with ALS, can they go to your website and get more information today?
Is that accessible to the public right now? Yes. Absolutely. So you just Google SynaptiCure, go to our website, you set up an appointment with our care coordinator. They explain everything that we offer and what's to come in terms of layering on additional services and supports in the months ahead. It's completely available and accessible nationwide.
We'll be sure to link that here for those who are listening in. We'd love to know what's next for you.
Oh my gosh, I don't have any hobbies, so I don't know how to answer a question about my personal life.
I was like, uh, I don't know, let's look at the product roadmap for this week. I don't know, it's real dorky.
We have a 4 and a 6-year-old. They're very rambunctious and very fun. Brian actually has shared— I joke he has an online diary, which is his Twitter account, which I think it's like 115,000 followers. And I, I give him a hard time and I am impressed. But yeah, Brian shares a lot about our family life and what it's like to have young kids while navigating this illness. But summer's around the corner and we're just like looking forward to getting outside. Obviously, ALS being a super high-risk disease for COVID and whatnot, we've been pretty tightly on lockdown even this year. And so just very excited to have the Chicago weather warm up and get out and go to soccer games and just enjoy all that with the fam.
We're excited about hopefully some more good outdoor time, maybe like an American Girl doll brunch. That was like I mean, I don't know.
The one time I visited Chicago when I was a kid, like, that was the thing.
That was probably one of the last places we took the girls before the lockdown. So you are spot on.
Spot on. Glad things haven't changed too much since I was—
Not at all.
An American Girl doll fan.
It's 100% the case today. Yeah. And they talk about their American Girl dolls all the time.
Sandra, this has been such a treat for us. And incredibly moving stories. We are so excited to be able to get the word out about Synapicure and share your journey. Thank you so much.
Thank you.
Thanks for listening to this episode of The Room podcast. We hope you enjoyed today's conversation. We also hope to see you next Tuesday for another inspiring conversation. Please like, subscribe, join our newsletter, follow us on Twitter and Instagram. We'd love to hear from you. In the meantime, we'll see you next week in The Room.
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All opinions expressed by Claudia and Madison and podcast guests are solely their own opinions and do not reflect the opinion of the Five EC. This podcast is for informational purposes only and should not be relied upon as a basis for investment decisions.
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