March 3, 2022
[00:00:48] Gary Bisbee, Ph.D.: Sandra Abrevaya and Brian Wallach’s life turned upside down when Brian was diagnosed with ALS in 2017 and given only a short time to live. How to proceed? Brian shared there are two types of leaders, those who want to make a difference, and those who need to make a difference. Sandra and Brian realized they needed to make a difference and the ALS diagnosis was an opportunity for them. Sandra and Brian found that ALS was a disease within incomplete and fragmented information about diagnosis, treatment options, genetic testing, and clinical trials. They founded a nonprofit, I AM ALS, to reframe the ALS narrative from hopelessness to authentic reasons for hope and create policy change. Their advocacy facilitated passage of the ACT for ALS legislation, which allocates $100 million annually for five years for research and expanded treatment options.
[00:01:49] President Joe Biden: And Brian and Sandra are joining us today virtually. I say “hi” to you both because they turned their pain into purpose.
[00:02:00] Gary Bisbee, Ph.D.: The next step was to launch a new company, Synapticure with the backing of GV, formerly known as Google Ventures, and other investors. Synapticure facilitates coordinated care, creating the continuity that Brian and Sandra wished they had had in their treatment experience. It also gives patients access to cutting-edge telemedicine services, genetic testing and treatment, information about clinical trials, and support for the ALS clinical community. For young leaders. Brian’s advice is, don’t be afraid to fail. With persistence, humility, and faith, you can become a better leader and create more change than you ever thought possible.
Well, good afternoon, Sandra and Brian. Welcome.
[00:02:50] Brian Wallach: Thank you so much for having us, Gary.
[00:02:52] Gary Bisbee, Ph.D.: We’re pleased to have you at this microphone. Let’s get to know you a bit better. I’d like to ask each of you, what was life like growing up? Brian, let’s start with you.
[00:03:03] Brian Wallach: So I am one of the rare souls who’s actually both born and raised in Washington, D.C. And I grew up with two parents who were lawyers and who tried to convince me not to become a lawyer. But I didn’t listen to them. And most of my time was spent playing sports growing up. I played baseball, basketball, soccer, football, and ran track .
[00:03:47] Gary Bisbee, Ph.D.: You ran track at Yale, I think, Brian, right?
[00:03:53] Brian Wallach: I did. And it turns out that I was fairly fast in the 400. So I ran at Yale for about two years, but unfortunately, my body caught up with me. I realized that I was 150 pounds and I should not be running the 400.
[00:04:25] Gary Bisbee, Ph.D.: Yeah, stamina. That’s a good point. Well, so Sandra, Brian grew up in DC. Where did you grow up and what was life like growing up for you?
[00:04:34] Sandra Abrevaya: Yeah. My childhood was the opposite of Brian’s childhood. I grew up playing zero sports. I was not athletic in any sense of the word, picked, probably last for every sports team. But I was very, very engaged in the arts. And so I was much more of a creative kid and I did a lot of theater and a lot of plays since a very young age. And that’s where my passion was. But yeah, I grew up in Chicago, first on the south side in Hyde Park, and then later on in the north suburbs of Chicago.
[00:05:07] Gary Bisbee, Ph.D.: This show is about leadership and sustaining leadership excellence. You’re both terrific examples of that. What did you think about leadership when you were growing up in the early days? Brian, did you think at all about leadership and all your activity in the sports fields?
[00:05:28] Brian Wallach: For me, it began as a kid. I thought about leadership in two ways. Number one is what I saw around me in DC, which was people giving speeches, inspiring speeches, and moving people to act, or at least trying to. And number two is what I saw the sports field, which was a good leader is someone who makes others around them be better than they would otherwise be.
[00:06:22] Gary Bisbee, Ph.D.: What about you, Sandra? Obviously not on the ball field, but what did you think about leadership?
[00:06:29] Sandra Abrevaya: Yeah, I probably was not as keyed in to leadership as a kid as Brian might’ve been. But I did spend most of my twenties in Washington, D.C working on the Hill. I was a hill rat as they call us. And I, at a very young age, started working for a Congressman, then a Senator, and a cabinet secretary. And so basically, I sometimes think of my coming of age as happening in Washington, D.C. In politics and, of course, from that viewpoint, leadership to me was policy change and qconcretely using legislation to make people’s lives better.
[00:07:09] Gary Bisbee, Ph.D.: So you each went to law school. Brian, Georgetown, Sandra to Northwestern. What were your aspirations for getting your law degrees?
[00:07:21] Brian Wallach: I had always wanted to be a federal criminal prosecutor. So I was lucky enough to actually have that job for a few years immediately prior to my diagnosis. So that, for me, was the reason to go to law school in the first place.
[00:07:53] Sandra Abrevaya: I did not go to law school to become a lawyer. In fact, what’s interesting, Gary, I’m not sure if you know this, but I started out at Georgetown Law.
[00:08:03] Gary Bisbee, Ph.D.: Oh, I didn’t know that.
[00:08:04] Sandra Abrevaya: And when I was accepted into the night program there, my welcome video was a video surprisingly of a young Brian Wallach welcoming me to my new program, after which I called my boyfriend at the time and let him know that there was some video that was being used school-wide and it was his. And Brian’s reaction was, oh, that’s, that’s great. I thought they were going to use for a year and it turns out about 10 years later, Gary, they’re still using Brian’s welcome video, which we’re very flattered by. I ultimately went to law school because I had begun in a career in political communications and I saw a lot of policy committee staff members with a degree in law that were leveraging that degree to be more focused on policy making. And so for me, that was an opportunity to pivot from communications into policy.
[00:09:03] Gary Bisbee, Ph.D.: Well, the staff at Think Medium has absolutely committed me to ask the question, where and when did you two meet?
[00:09:17] Brian Wallach: Yeah, we actually lived down the block from each other in 2008 in Washington, D.C., but we never met there. We actually first met in Manchester, New Hampshire on the Obama campaign. And we met at a staff picnic where I remember
[00:09:43] Sandra Abrevaya: Oh no, what are you going to say?
[00:09:46] Brian Wallach: that Sandra showed up and my first thought was, oh no, they’re bringing in new people.
[00:09:58] Gary Bisbee, Ph.D.: Brian was the deputy director, weren’t you, of the campaign there?
[00:10:05] Brian Wallach: So in the primary, I was the deputy political director. And then I went back ,to New Hampshire for the general and became the political director. And that’s where we met on the general.
[00:10:18] Gary Bisbee, Ph.D.: All Alright, very good. Well, thank you. The staff at T Mk medium will be happy that they now know that. And they will be happy with me that I actually asked you the question.
[00:10:27] Sandra Abrevaya: Well Gary, they can call me anytime. I’m a consummate oversharer and I can provide a lot more detail offline. I’m at the ready.
[00:10:37] Gary Bisbee, Ph.D.: Good. Let’s make sure it’s offline. That’s good, Sandra. Well, so in 2017, Brian learned that he was diagnosed with ALS. That was a circumstance that you’ll never forget, and has triggered off an enormous amount of action in a short period of time. But Brian, let me ask the question this way, what was your feelings over the first six to twelve months? I mean, you went through stages of feeling about this, but what was the mobilizing factor over that first six to twelve months in terms of your priorities and how you were thinking about life?
[00:11:15] Brian Wallach: We actually were diagnosed the same day that Sandra and our youngest daughter came home from the hospital after just being born. So for me, there was a bit of time where I tried to ignore the diagnosis. And after I realized that that was not a real option, there was a bit of soul searching. And then what I began to do was to learn everything I could about the ALS space. And what I saw were some amazing people doing amazing things for different reasons. And it became clear to me that there were two types of leaders in the fight. Number one. One were the leaders who wanted to be there and number two were the leaders who needed to be there. So that was, for me, the moment of awakening where I realized that I needed to be there and I could make a difference.
[00:13:05] Gary Bisbee, Ph.D.: Well, you’ve made a difference, a tremendous difference already. We’ll go into that a little bit more later, but, so Sandra, you became obviously a caregiver to Brian. You had two small children. How did you process all of this in the first six to twelve months?
[00:13:23] Sandra Abrevaya: Yeah, it was devastating. As Brian shared, we had basically just come home from the hospital with our newborn and we had a two year old. We had no family history and Brian had some seemingly benign symptoms from our vantage point, like a weakness and a cramping in his left hand, which resulted in him coming home with what was essentially a death sentence. He was told he might have six months left to live and there was nothing we could do about it. And no one could really help us. And we were shocked, devastated, and terrified. And so to Brian’s point, we really hunkered down for about six months or so just trying to process this. And then we began to think about what we could do, and frankly, what we felt we had an obligation to do.
[00:14:28] Gary Bisbee, Ph.D.: Well, the first major initiative, at least that I’m aware of, is forming the nonprofit, I AM ALS. What were the circumstances that led to that? And then I’d like to ask, what can people do to support I AM ALS?
[00:14:48] Brian Wallach: The way that came about,I remember, one day I told Sandra I think I want to start an ALS nonprofit and Sandra said to me, I have run two nonprofits. If you want to make me involved in the third, you have to fly all around the country and meet with everyone and figure out really what is missing, if anything, and if there is something, how we can help. And that led to a realization that we had an amazing network that was able to make D.C. move in a way that it had never done for ALS. And we also had the chance to reframe the narrative because what we saw were authentic reasons for hope, but what we saw in the media was hopelessness. So we wanted to make sure that people were able to see the promise in this fight and to see how, if we cure ALS, it will lead to breakthroughs for multiple other neuro diseases. I think that the biggest thing that we want to do, and the best way for people to help is to sign up to our email listserve. That way, they’ll be able to take action to help move the fight forward. It could be five minutes every month or five hours every day, or anywhere in between. And that’s how we’re going to change the course of this fight forever.
[00:17:17] Sandra Abrevaya: Yeah, I think, Gary, just to add to what Brian shared, what Brian and I activated with I AM ALS was built on the foundation of what we learned about community organizing on the Obama campaign and in politics and government work in general. And so, what we feel so proud of, I think, is both what we’ve accomplished, but also the sort of process by which we’ve engaged the ALS community and then the broader community to drive this sort of unprecedented community organizing in patient advocacy that is making history. And so, for us, I AM ALS is that vehicle for community organizing and we’re very strategic about leveraging each new sort of participant’s super power. And to Brian’s point, going to iamals.org is the best way to get connected to even a micro action. And as Brian often says, even if you’re not affected by ALS, the work we’re doing is a way to participate, even in micro ways, that make you feel good because we’re doing something really special. So you often frame it as, like, this is an opportunity to do something great today and it’ll take three minutes.
[00:18:40] Brian Wallach: And one last thought. One of our volunteers put it best. She said, that I AM ALS is a platform for the community to come up with new ideas and then to make them real, because that is how we empower people to understand that they can be a force for positive change.
[00:19:13] Gary Bisbee, Ph.D.: Yeah, I think it’s clear that, as a country, we spent a lot of time and energy and resources on cancer and heart disease, as we should, but we really haven’t spent as much time and energy on the neurological diseases. And it seems to me that one significant point about your leadership here is you’re definitely raising awareness there. And that gets to your point about, everybody’s affected really one way or another, maybe not bspecifically with ALS, but certainly with other neurodiseases. At what point did it occur to you that you could be so successful with the ACT for ALS legislation, a hundred million dollars a year over five years, recently signed by President Biden, of course, single called you out. At what point did you realize that you could have that kind of success?
[00:20:13] Brian Wallach: In about 2020, we saw multiple therapies that were moving through the drug pipeline and those therapies were not accessible to the vast majority of ALS patients that are not able to be a part of clinical trials due to exclusion criteria. So we realized that there was a massive opportunity to do two really important things. Number one is to provide access for those patients and hopefully slow down their disease. And number two was to learn from those patients by doing research on how the therapy was affecting their disease course, which was something that we had never done before and that was so important to understanding if a therapy is beneficial for one year or four years. That’s how we were able to craft ACT for ALS and we were able to explain to people there’s a massive unmet need here and that we have the chance to actually help people who have been told that there is no hope.
[00:22:11] Gary Bisbee, Ph.D.: Now that ACT for ALS has been passed, what are the next steps in your advocacy activities?
[00:22:23] Brian Wallach: We have to get funding appropriated from Congress. So that is our first priority, to allocate a hundred million dollars for this year. We’re also working with the FDA and NIH to move the program forward so that they are able to begin as soon as possible. And beyond that, we are working on ARPA-H because we think that presents an amazing opportunity to re-imagine many parts of the research system.
[00:23:17] Gary Bisbee, Ph.D.: Well, you launched February 1st, so just a few days ago, Synapticure, a company focused on neurological diseases, particularly ALS to begin with, and launched it with a $6 million investment from Google Ventures, or now GV, and other investors. What’s the purpose of Synapticure? How did you kind of arrive at the fact that forming a company would be useful at this point?
[00:23:54] Brian Wallach: We saw two things happening. We saw amazing progress, in the bench science, the understanding of ALS and the genetic variants of ALS. But then what we also saw at the same time was that the care system had used the exact same model for nearly 30 years, and that that was not incorporating the latest advances in technology and scientific advances. And we began to see, in order to make that come together, we had to create a company that was focused on democratizing care to all patients and having that platform be able to perform the cutting edge testing that patients need to understand their type of ALS and that clinicians need to help advise patients on what treatments and trials may be best for them.
[00:25:29] Gary Bisbee, Ph.D.: Can you review, what are the specific services that will be provided by Synapticure?
[00:25:37] Sandra Abrevaya: Yeah. So Synapticure is a full stack teleneurology platform. And we start with care coordination. So for any patient who enrolls, they get connected to a care coordinator who is there to create, via telemedicine, care continuity to relieve the administrative burden that Brian and I ourselves have experienced in our own journey, and then to bring these individuals through a course of services that help them, to Brian’s point, understand, as specifically as they can, their subtype of ALS, because the scientific advances have shown us that this is truly a heterogeneous disease. And so we need to start treating it as such, and some of the most promising therapies are targeting specific genetic subtypes. And so, as soon as the patient enrolls and gets supported by this care coordinator, they then get taken through a course of genetic counseling, testing. There’s additional testing that synaptic here is envisioning bringing online in the near future that can even help further refine our understanding of each patient’s individual type of ALS. On top of that, we layer in teleneurology support. And so Synapticure is partnered with an entity CareND that is a covered entity that is hiring on an amazing group of teleneurologists that can provide on demand telemedicine appointments. And as Brian and I both personally experienced, you often want to see your ALS clinician far more frequently than is possible to do in person. We’re just given the sort of backlog that ALS clinics face. And so, through the course of all of these supports of care coordination, of teleneurology, genetic testing and counseling, and a whole host of sort of future offerings that we’re imagining together with like-minded caregivers and patients we think we can make, really, Synapticure become that first platform and opportunity for ALS patients, and then hopefully, sister diseases, to be able to access care more easily, more comprehensively than has been possible before.
[00:27:56] Brian Wallach: I think one of the things that’s important to add to that, that we are partnering with the leading ALS clinics so that patients can have the ability to see a doctor in person if they want to or need to, and also have the ability to have more resources from their own home, which does make all the difference in the world. As the disease, ALS, progresses, we all become more and more disabled.
[00:28:46] Gary Bisbee, Ph.D.: Right. You’ve covered this, but let me ask the question specifically if I could just to make sure that we make this point, and that is, from the standpoint of a patient or the patient’s caregiver, they plug into Synapticure through a coordinator that they know they have the name and so on. Is that correct? Did I lay that out properly?
[00:29:10] Sandra Abrevaya: Yes, absolutely. So the care coordinator that they meet at that first appointment is there to stay with the person living with ALS and their caregiver through every step of the journey, right? And so in that way, we want to create really the next level of continuity of care that Brian and I really desperately wanted when we were going through this process, but couldn’t find easily. And so that individual supports you through every step, is available whenever you have additional questions, and brings in, as Brian noted, all of these additional resources. And so that could include appointments with the top ALS clinics, including some of our early collaborating clinics, MGH and UCSF, and now several others. That could mean additional Synapticure teleneurologist visits. That could mean additional testing, clinical trial decision making support. So really, we’re looking to augment everyone’s current care and level it up.
[00:30:11] Brian Wallach: And these Individuals who are the care coordinators are nurses and social workers and a part of the physician practice. So they’re part of the team that will actually care for the patient. And that is how we make sure there is no gap in the care we’re hoping to provide.
[00:30:49] Gary Bisbee, Ph.D.: Right. Is there a disease specific model that you’ve seen that could serve as a bit of a model for Synapticure?
[00:31:01] Brian Wallach: We have seen a number of companies that have been started in the oncology space and also in the epilepsy space and ophthalmology space that have used similar models and they’ve been really successful in meeting the patient where they are and helping the clinician understand what else the patient needs so the clinician is better able to help the patient.
[00:31:52] Sandra Abrevaya: Yeah, and I think, to that point Gary, we’re obviously, first and foremost, focused on how to level up care for ALS patients. But alongside that, we’re here to suppor t the ALS clinical community, right? We want more individuals diagnosed with ALS to be seen by those clinicians because, right now, for many patients, traveling to those clinics is cost prohibitive, geographically prohibitive, and then also, at the end of the day, these clinics are amazing, but they are really taxed and they have a lot of patients that are trying to get in the door. So we’re also really focused on how we can help ease the burden on our leading clinicians in this community, nationally speaking, and allow them to see more patients, to bring more people diagnosed with ALS who are completely left outside of the ALS care ecosystem into this ecosystem.
[00:32:55] Gary Bisbee, Ph.D.: I’d like to return to a bit of a personal question. As you just think about this, in a few short years, you’ve formed a successful nonprofit. You’ve a major piece of legislation. Now, you’ve formed Synapticure company. Where do you get your energy from, you two? That’s a serious question. I mean, that’s hell of a several years. I,’ll tell you. Where do you get your energy from?
[00:33:26] Brian Wallach: There has been power in the purpose. And what I mean by that is, when I was diagnosed, I knew I could no longer serve as a federal prosecutor and then I knew there would come a time when I would not be able to be the father that I envisioned being because of physical limitations. So for me, I felt a bit lost. So what this allows me to do is to turn that feeling upside down and to realize that I can actually change the course of this disease. So for me, I am serving. I am driven by necessity, but also a belief so we can make a real difference and that difference may save my life and thousands of others.
[00:34:56] Sandra Abrevaya: I mean, Gary, we grew up in public service, so that’s sort of how we’re built. That’s what makes us feel good. So in the absence of other things that can make you feel good in a situation like this, this was the natural thing for us to do that gave us agency and purpose, and made us feel good.
[00:35:23] Gary Bisbee, Ph.D.: You’re really making a significant contribution, which is probably making a lot of other people feel good too. So good for you. This has been an awesome interview. Thank you very much, but I have one last question. And that is, we have young leaders, up and coming leaders, that watch this show. What advice do you have for younger up and coming leaders as they think about their career as a leader?
[00:35:52] Brian Wallach: I think the most important thing I can say is, number one, do not be afraid to fail. Number two, be humble enough to know that you do not know everything. And if you listen to people, you will learn so much more and become such a better leader than you ever thought possible. That’s what I’ve tried to do. I failed a lot, but I’m learning.
[00:36:36] Gary Bisbee, Ph.D.: You answer that question, Sandra.
[00:36:41] Sandra Abrevaya: I think I’ve learned a lot from Brian about being a leader, which is to keep at it and persist as we keep failing and trying again and failing and trying again, because we’ve ultimately succeeded after a series of failures. And so I think it’s also about having a little faith that it can work out or come through in the end. And I think Brian has that hope and faith in spades. And so I’ve drawn on that through the harder moments of grinding through work. And I think it was something I’d impart to others.
[00:37:20] Gary Bisbee, Ph.D.: Well, Brian and Sandra, you have our full respect and admiration. It’s just terrific what you’ve accomplished. Thank you so much for being with us today.
[00:37:31] Sandra Abrevaya: Thank you so much for having us, Gary.
[00:37:33] Brian Wallach: It was a privilege.