Ep. 85: Her ALS Story Leaders: From Diagnosis to Advocacy

[00:00:00] Sandra Abrevaya, J.D.: Hi, my name is Sandra Avaya and I am the co-founder and CEO of Synaptic Care, a telemedicine company that’s focused on neurodegenerative care, starting in als. I’m also the co-founder of I Am als, and most importantly, I am the caregiver to my husband Brian Wallick, who is living with ALS and through whom I have met these incredible women leaders that we have as guests with us here. So I’m very, very excited to welcome Leah Gwen and Alex who lead her ALS story. And I just wanna take a second to read how this incredible group characterizes their drive, their mission, their ethos, which is we are a group of women diagnosed with ALS before our 35th birthday who are challenging the stereotype that ALS is an old man’s. Ooh, yes. . So Leah, could you, for us just share a bit more about what you are focused on, what you all have been most energized about, and just give us a little bit more background on the amazing work that you all do through your leadership with her als.

[00:01:21] Leah Stavenhagen: Definitely. Thank you, Sandra. So Her ALS Story actually came together in the spring of 2021. The goal is really primarily to create a network for young women with ALS to lead into, because disease, especially ALS can be so isolating. And then on top of that, it’s a way for us to focus our energy and work on advocating together to have better, more effective treatment options, hopefully very, very.

[00:01:54] Sandra Abrevaya, J.D.: There’s been quite, a stir in the ALS community. In the last 24 hours. The first new ALS drug in five years, and the third ALS drug ever was approved. And I know you all played a role in advocacy. I would love to hear from you on what last night’s news means and sort of what the road ahead looks like.

[00:02:21] Gwen Petersen: I’m happy to start. We all played a role, Sandra, including you and Brian, so yeah, of course we’re excited. Sandra, it’s another needed tool for the toolkit, another drug for the cocktail. Wouldn’t it be cool to explore at this point what. What are approved drugs for als, how they’re working together, I don’t know. This is just the tip of the iceberg. It’s exciting. Of course, we still need, , we’re still in dire need of real disease modifying therapies, so what that means, Treatments that’ll halt, or reverse our progression where we don’t have that right now. yeah, I think, the approval of Amylyx’s therapy, which I cannot pronounce, it’s exciting and it’s the chip of the iceberg.

[00:03:37] Alexandra Cavaliere: What I will also say that it says a lot about what we, as a community, can achieve and what we can do as for as stack backing drugs in the future.

[00:03:53] Sandra Abrevaya, J.D.: A lot of people over the years have, maybe tokenized patient voice here and there, and I think. Last night’s decision by the FDA to approve this new drug after years of no drug approvals in a move that was very much supported by the patient voice and the patient demand, for flexibility from the fda for thinking about how you treat terminal illnesses with limited therapeutic options. I’d. To hear your perspective on, this concept that there are policy makers, and decision makers in one realm, and then patients in another realm, and what your experience as being individuals living with als, young women living with ALS has. Meant in terms of your understanding of the policies that we need, how FDA perhaps needs to think about drugs and drug approvals in a certain way.

[00:05:00] Gwen Petersen: So Sandra, you used the word tokenize. And, that is why we’ve started her Als story and why we keep, pounding the pavement. Als isn’t going to tokenize us. We’re just, we’re not gonna let.

[00:05:22] Alexandra Cavaliere: This disease is not the same for everyone, but like Gwen has ALS longer than me. I’m more progressed. As a lawyer, I have looked at people objectively, but this is really a subjective disease and we need to make sure lawmakers understand this not one size fits all. As a lawyer, I used to look at things objectively, you know, like we have the typical men, right? But this disease is so subjective, all so different. Like the things that Leah has I might not have and the things that I have Leon might not have. And so, it’s not one size fits all solution and I think it hold for lawmaker to around there and find solution, but we need to show them how the variations and that one drug might help 10% and that should be enough.

[00:06:45] Sandra Abrevaya, J.D.: Alex, what you’re saying about how your disease has progressed at a certain rate, which is different from Gwen, which is different from Leah on issues that affect Leah or Gwen might not affect you and vice versa. And for the FDA and for policy makers as they make decisions to see this leadership in young women who are saying, We are each so different in our experience of this disease and our. Symptoms and our progression, and also in which therapies we’re gonna respond to. So as you approve these drugs, it’s not just about hearing the patient voice, it’s about me playing a role and helping you see that approval for a drug that works for. 20% of a population is still a very powerful approval. Just really to your point, Alex, understanding the heterogeneity of the disease, which I mean, if you don’t have your leadership, if you don’t have you all speaking out the way you have, it’s so easy for lawmakers, for policy makers to just make blanket decisions and to not really understand the faces and the humanity behind the numbers.

[00:07:56] Alexandra Cavaliere: I hope so. Though, perfectly said.

[00:08:00] Sandra Abrevaya, J.D.: Well, Alex, okay, so you were an attorney. So I, I’m really curious, This is something the four of us have chatted about in the past, which is each of you has been a leader in your profession before getting diagnosed, and now you are leaders in healthcare advocacy. And I’d love to hear from your perspectives. What, transitioning from that sort of more formal professional leadership to this advocacy chosen leadership, has been like for you.

[00:08:26] Leah Stavenhagen: I’ll start us off. Yeah, so before I was working in management consulting, so I guess there was a little bit of leadership involved with that even though I was pretty low on the totem pole cuz I was lucky enough to be diagnosed at 26. So way too early, like all of us. But I guess it’s interesting because, working in consulting, I love my job, I love working hard, I. You know, exchange it with professionals about different topics that working on different projects. But you know, there was no real purpose behind it, right? Because, so I had to shift gears. I actually moved from grads back to the US to be closer to treatment options, which made it an obvious time for me to stop working. And so for a little while, I wasn’t working and I was very happy. And I felt lucky to have the time and energy to focus myself on advocacy because it gives it’s such purpose. I never thought I would find such purpose in my life, I don’t think. And it fell into my lap, fortunately, unfortunately. And then I felt like I did have some skills thanks to my career that helped us to build a community of young women and to sometimes, be the one to keep people on track. It can be hard to motivate people to stay involved, to participate in things, and so I’m very happy to have that position to be the cheerleader sometimes and make sure that we’re all, we can all come together and be there for one another.

[00:09:54] Gwen Petersen: So I have so many parallels to Leah. As much as we know each other, we find out new things all the time. So like Leah, I was struggling with purpose in my job. I was actually thinking about a career change, had no idea what I wanted to do. That’s where my head was. And ironically, I was recruit, so I was a recruiter and, ironically recruiting researchers, at the same hospital where I got diagnosed. And so I, It’s funny, it was a crazy diagnostic journey. It. I came full circle, so went to my primary doctor and then to an outside neurologist, a couple other people before finally being diagnosed at U C S F where I was working at the time. So that’s, Separate discussion in and of its own, but, again, likely I was searching for more purpose. My husband jokes and, he says, he’s glad I found my purpose. We, we wish Als didn’t bring us here. But yeah, I now have a purpose.

[00:11:39] Alexandra Cavaliere: I wish I could say I was looking for a purpose and then at this time I was enjoying my paychecks and climbing the corporate ladder. I was waiting to slow down anyway. I was at big law to move to, and it was just a really hard life and not easy. When I got diagnosed, my firm filled up for me. They really allowed me and let me transition at the pace that was comfortable for me, which is like really amazing. And then when I heard about Her ALS Story from Gwen, I think I dove in right when I started in, I’m probably like a bully in a China shop in there, but it really made me feel like I have a, purpose in life and it made that transit from working all the time and contributing to the household, to really feeling like I’m helping other women like myself deal with this disease on a daily basis and like Gwen, I wish it wasn’t ALS, but I don’t think I could go back now. Where I am now, I’m happier today than I was two years ago and it actually didn’t change me but I am.

[00:13:29] Sandra Abrevaya, J.D.: Wow. Alex, if it’s okay with you, just wanna repeat some of what you shared just to make sure that everybody. Can hear it. Alex was sharing that she was practicing as an attorney at a firm, which, just watching Brian practice as an attorney at a firm I know firsthand is these are grueling hours and it’s, a challenging, lifestyle. And so you were sharing that, you were maybe not like Gwen and Leah looking for a shift or anything. You were heads down just in this corporate life before getting diagnosed and that with the diagnosis, just being able to be more present in your home life and be a part of other people’s lives, in particular, other women dealing with this diagnosis of ALS and contributing and supporting them and building this coalition that you all are building and that you shared as a capstone. That it seems crazy, but. You are happier in this, purpose driven work than you were before. Which is remarkable. And I think it’s remarkable that each of you is leading in the way you are, and in case listeners don’t truly grasp it, ALS is a neurodegenerative disease that is slowly taking away the ability to walk, to talk, to move, just to function. And then at the same moment, you’re being told it’s a terminal diagnosis with anywhere from, I don’t know, an average of two to five years. And yet for the three of you to stand up and show up as leaders in the face of those odds. It’s like I listen to stories of other people and their professional challenges and I’m just kind of laughing I’m like, , do you have a terminal diagnosis? And every like function in your body is failing you and you’re still showing up as a leader at work? No. I’m not impressed. Sorry. No offense. Because the three of you are doing that and that is just beyond remarkable.

[00:15:30] Leah Stavenhagen: To see when you get something like an ALS diagnosis is, I think especially as women in the US today, we are taught to go, go go all the time. You have to be independent, you have to be working so hard and do you not wanna let other people help you and. Unfortunately, we have been forced to ask for help and accept help, and it’s so heartwarming and just incredible to see the community that comes out behind to support you. And I think people really like actually being able to help you. So it’s almost obviously people wish they didn’t have to help me quite so much, but they’re so happy to be asked that they have that baby purpose. Ability themselves to be part of something. And so in a way it’s like a give and to take. And I think it also, like I have to also accept that I’m so fortunate to have the community, the family, the friends behind me that allow me to still be able to do work and advocacy work and, spend time behind my computer and not just be stuck, just struggling to eat or whatever. I do need a lot of help, and it’s because I have such a good support system behind me that I’m able to continue to do meaningful things that really make it so much easier to get out of bed every day.

[00:16:48] Sandra Abrevaya, J.D.: I have a question. Leah, building off what you said, how the advocacy work is motivating and it is. A reason to get out of bed and to keep moving and working. And I think before a lot of what we’ve seen in the last few years, perhaps there wasn’t as much community and organizing as there is today. And perhaps people just assumed that when you’re. Someone is given the equivalent of a death sentence and all facing all these physical hurdles that they would not be motivated to drive forward, change and fight for their life and all these things. And yet every one of each of you is just like totally , dispelling that, misperception,. Fighting against that perception of curling up in a ball or giving up and you’re showing up in these beautiful ways and how do you motivate other people who might. Be having a hard time, be having a hard time to, just motivate themselves the way you are getting motivated. How do you coach other women? Are there, is there advice you give them? Is there a way that you find it helps to get them up and, engaged? I’m just, I’m curious how you navigate.

[00:17:59] Alexandra Cavaliere: So we have a WhatsApp group that we’re all a part of, and we talk about everything from periods to sex, the medicine, the relationships we do it all. And then we have forums where we do zoom calls and we’ll switch, we and we talk about things like. How you keep your relationship going when your husband is like carrying you every day until, I think plus we’re talking about the things that might be taboo or like, Oh no, we, we don’t talk about that stuff, but we like jump in. We wanna hear and we give each other advice. I know Gwen has given me more marriage advice, than you know, I ever wanted to, and it’s hard like no one catches that we’re all really open and we’re all. We’re doing it too. There’s no like, oh, you know, he is a bad guy or you know, she’s been crazy and so like, we get it. We dealt with the same thing a month ago. or a year ago?

[00:19:33] Sandra Abrevaya, J.D.: Yeah, I just wanted to make sure. Everyone got the full breath of what Alex was sharing, which is that you guys have this WhatsApp group, which is amazing because in the health tech sector, there’ll be your formal work environment and then there’ll be these sort of women’s groups of getting together and sharing. But you guys just have a very organic, way to always be connected. And it sounds like, Alex, the extent to which you guys are very. Transparent with one another about your personal challenges, about marriage issues, about health, all the things that you have to navigate as a young woman with als. It almost. It’s almost like you lean in so hard and in a great way there that it gives you the strength to then when you need to organize advocate, you’ve basically filled one another’s cups and given each other that energy and that support that allow you to then get some shit done together.

[00:20:29] Leah Stavenhagen: I think what Alex said was perfect and to answer your question, it was, it’s so powerful to realize that you’re not alone to realize that other people are going through the same thing. They really understand, because of course, like my sisters are fantastic, but they don’t have the same struggles. And so to have this group of women that really get it, it’s incredible. Yeah, that also, I just wanna go back to what you said about, calling up in a ball. I think we also all feel like we don’t have a choice. Yeah, I could go crawl up in a mall and never go to a restaurant again and never see friends again because I’m embarrassed by my breathing machine or because I can’t walk independently. But I don’t have the choice to not have to do those things. So if I as won’t go out and live my best life regardless, I think it’s really important for people to continue to do stuff despite disabilities because so many people in our world are actually living with disabilities. And to show that, we. Still doing really cool stuff.

[00:21:29] Alexandra Cavaliere: I think Leah and Gwen and I do work really hard to make sure everyone has a voice no matter whether they can talk or not. And we have so many different opportunities that we’re able to all fill a different role no matter how much energy or motivation. We have, we have small things, we have big things. You know, I think we have a lot of options.

[00:22:06] Gwen Petersen: Hey Sandra, what’s the secret sauce? How do we, from your experience with building, Im Als and Synap, getting the community involved and excited, like, how did you do that? What’s the.

[00:22:31] Sandra Abrevaya, J.D.: I think, I see you guys doing this naturally, but when I first entered this ALS space, I saw this 60 minutes piece. I don’t even remember who the patient was at the time, but it was like so depressing and I was like, Wow, we have ALS and I can’t even watch this. Like, yikes, like, how are we going to connect? Our broader communities with the, the world outside of the echo chamber if it’s so depressing and despondent that it just makes people turn off. And so that was one of my like biggest aha moments when I first entered this world. And then the other part was, and there’s a reason. To be hopeful to talk about these therapies that are coming online, that are continuing to extend life and let’s add on drug by drug and let’s keep buying ourselves all more time. And so I think the combination of authentic reason for hope, a lot more drugs in the pipeline. And if we don’t talk about that possibility and that opportunity, Then we don’t, we might lose people who would otherwise engage and help us. And I think that, I see that in the way you guys talk about this disease. Leah, just, you’re showing up. You’re gonna go to that restaurant, , you guys are gonna get out of bed, you’re gonna be motivated to be together to support each other and to get work done together. The positive way in which you guys operate is energizing to yourselves and then it attracts,

[00:24:03] Leah Stavenhagen: I’ve been in touch with an ALS association in France a little bit, cuz the beginning, I think people were pretty turned off by them because they did this whole big campaign about here, you know, your body is your prison, da, da, da. And please donate to us because it’s so miserable. It’s such a horrible disease. Like all patients hated this organization and they’ve recently kind of tried to do a rebranding that’s very hope focused and found in which I think as a patient is a lot more encouraging to see, and also probably as an outsider is also easier to support because it’s, I don’t know, maybe somehow easier to connect with or something as opposed to just scaring everybody.

[00:24:41] Sandra Abrevaya, J.D.: Well, and I think Alex, just like you said, when you bring people in, you make everyone feel like they have a voice and a purpose. You know, I find that it really helps people publicly to see how their support matters. This new drug was approved, historic, right. Third drug ever in history. I think it helps people to hear that it was funded with some of the ice bucket money, right? People are like, Okay, I did something to help this cause and it resulted or helped result in a new drug, right? And so when I’m speaking externally and trying to bring in more people, Gwen, to your question. just like you, one does in their own community. I try to say publicly, you did this thing and it helped us. So do some more cuz it’ll help some more. I think, I don’t know, I see you guys already operating in that spirit and I think it’s amazing. It’s awesome to get to do this. Guys. Thank you. Just like a total pleasure and treasure to be able to share this with the world.

[00:25:42] Leah Stavenhagen: Thank you so much.

[00:25:43] Alexandra Cavaliere: Thank you.

[00:25:43] Gwen Petersen: Thank you.