Mike Graglia, CEO of Cure SYNGAP1, Named Chief Influencer
Anthony Shop: Welcome to another episode of Chief Influencer. I'm your host, Anthony Shop, co-founder of Social Driver. Let's face it: Washington is the center of influence in the US and arguably in the world. Chief Influencer features leaders who have figured out how to break through in today's fragmented and fast-changing environment. Social Driver teamed up with the Communications Board and the George Washington University College of Professional Studies to recognize these incredible leaders as chief influencers and highlight how they inspire and influence others. I'm thrilled to introduce today's guest, Michael Growlia. Mike is the founder and CEO of Cure Synap 1, a nonprofit accelerating research into Synap 1 related disorder to bring therapies to children like his son, Tony, who was diagnosed in 2018. Now, before we dive in, here are a few things that I think you should know about today's guest.
First, Mike is a leader driven by personal purpose and urgency. After Tony's diagnosis, he didn't just enter the rare disease world as a parent; he helped build an organization focused on accelerating therapies, supporting families, and pushing research forward at a time frame that matters for children like his son. There's, there's an urgency to this. Second, he's turned that personal mission into real momentum. Under Mike's leadership, the organization has committed more than 6.2 million dollars to research and helped grow a global family-led movement with sister organizations in the UK, Europe, Australia, and Latin America. He inspires families and leaders in the rare disease community, showing how personal stakes can drive extraordinary leadership. And third, Mike brings an unusually broad background to this work because before founding Cure Singap 1, he built a career across public policy, international development, and strategy with roles at the Gates Foundation, the Emerson Collective, New America, BCG, and the World Bank Group, along with earlier service in Zimbabwe and the Peace Corps in Namibia. He holds an MBA from Columbia, an MA from Johns Hopkins SC supported by the Paul and Daisy Soros Fellowship, and a BS and math from Gonzaga.
Mike, you have been called many things: a visionary advocate, a strategist for rare disease research, a Paul and Daisy Zoros fellow, a Bronman fellow, a relentless champion for sin gap one families, a dad, of course. Well, today we're proud to call you a chief influencer. Welcome to the show.
Mike Graglia: Thank you very much. It's nice to be here. I'm glad that we got introduced. I mean, the work that you're doing is getting recognized globally. It's getting recognized nationally. I heard about you from our friends over at Milin.
Anthony Shop: And just to start off, you know, for listeners who may be new to Singap 1 related disorder, they may have never heard of it before, what impact are you trying to create in the world? Who do you have to influence to make that happen when you're dealing with a rare disease that a lot of folks, unfortunately, haven't even heard of, right?
Mike Graglia: So I think what impact and who do I have to influence are two important questions. That the mission is to get a cure for Singap 1. Singap 1 is one of these rare genetic diseases that, you know, individually are rare, but together there's—they affect millions of people in the United States. And um, Singap is a combination of autism, epilepsy, intellectual disability. Any one of those three things is bad; together in one poor little kid, it's just terrible. Compounded by disordered sleep, GI—just, these kids are very medically complex. They're on drugs from very early age, and the the parents are generally just endlessly running around from doctor to doctor. And they they live a long time; our oldest patient is about to turn 70. So it's it's a lifelong um disability that impacts the patient and the family. So the impact I'm trying to create in the world is to make a medicine for this disease, right?
This is possible with science today. This is down the middle possible with science today, but it hasn't happened for a variety of reasons. And the impact we're trying to push is to get industry to make this medicine and make it available to our patients. So that's easy. The hard question is your question: who do we have to influence? We have to influence um academics to work work on this disease. We have to influence clinicians to treat these kids and better understand the disease. We have to influence companies to invest their their time and talent into this. We have to influence investors to put money into those companies to do it. And we have to influence parents to not give up hope, because this disease is just—it it it it really taxes the family. And I have I have families who are fighting and are helping and are doing what they can, and I have families who are just barely hanging on and and struggling to take care of these kids and and it despair is a very real problem, right?
And so I'm trying to influence all of those people to work together with us to drive forward to get this medicine that we know how to make into these humans that we know have the disease. It shouldn't be this hard, but everything in rare disease is um helps you see all the many gaps in our healthcare system.
Anthony Shop: Yeah, and my understanding is that when your son Tony was diagnosed, there was no real road map. How did you realize what the community needed most that didn't yet exist and what to prioritize, how to plug it?
Mike Graglia: I I don't want to pretend I've I have made no mistakes. You know, I've been—Tony is 12, he was diagnosed when he was four, it's been eight years. We've had a lot of um iteration. But I think when I started, there was a handful of rare diseases that people knew about: Angelman syndrome, Rhett syndrome, DY syndrome—or the big three. All of those end in syndrome because Dr. Angelman and Dr. Rhett and Dr. Dvy saw these kids who look the same and said these kids had the same disease and then later we figured out, oh, D is caused by SEM1A, Rhett is caused by mech B2. I can never remember what Angelin's caused by. But like, you had the syndrome, and then you had the gene, and then we sorted it out by going after the gene.
When you start hearing about gene diseases that are really named after bad license plates, right? Singap 1, KCNT1, SCN 2A—I could go on. What happened there is we found the gene, and then we found the humans later who had disorders in that gene and looked the same, and then we said, "Okay, we're going to call this disease after the gene." So Dete syndrome, which is one of the OGs, one of the big diseases—when we were diagnosed, we were told, "Well, what you want to do is do what DY did." So I went to a DY conference, and I went and I met with the DY leadership, and I went to a big epilepsy conference, and I looked at what DY was doing. And they had a full-blown advocacy group, and people in the space will say, you know, Dvy is a huge disease, a lot of support, lot of—and I met a mom, a wonderful mom named Maryanne Mescus and some of her colleagues, and she and four moms, I want to say um—I'm going to get this wrong but more than 12 years ago, might have been might have been 18, I don't remember—their kids were diagnosed and they were running around a conference and there they were, where I was.
And I said, "Okay, I want to do what DY did. What's DY doing? Let's do it. Why is no one doing this?" And and really uh Curing Once started as me saying, "What did DY do and how do we do it?" And then, you know, once you show up in this space, there there's so few people doing this work and there's so few resources. But once you show up, you find your people. You find the other patient advocates, and and we we all understand what each other is facing, and we help each other and we give each other advice. I still copy what Maryann Mezcus is doing, and a lot of people now copy what I'm doing. And that's fine. That's because we all have different diseases and and kids we're trying to help.
Anthony Shop: You talk about copying what others are doing, you know, getting inspired by them um but there's some things you're doing that I would say others uh you didn't copy, you kind of innovated on on yourself. So a lesson we learned from 130 plus chief influencers is you have to learn the lingo, right? Just like you can rattle off these syndromes and talk about the specific genes that are in, you know, when you show up, you have that credibility because you didn't know that stuff, but you decided to lean it and to learn all this complicated, you know, language, right? These acronyms, etc. Well, when it comes to like the the branding marketing side of things, you have also leaned in. We have to kind of learn the lingo of platforms, and one of the things that you've done is um you've you've created a video podcast, and that's not something we see from every rare disease organization. My understanding is that it was your wife who pushed you toward video because she thought people needed time to get to know you. And I wonder if you could kind of talk about that story when you decided to like take this knowledge and take this passion and say, "I'm going to use the power of my personal brand, my personal influence, I'm going to try to get this message out there." Can you share a little bit more about that journey with us?
Mike Graglia: Sure, sure. I don't think I had a personal brand to be to be clear when I started this. Like, I was just a guy who had done some stuff, and my kid got sick, and we started the patient advocacy group. And very quickly when you start a patient advocacy group, you you're you're getting pulled in two directions. You're dealing with a lot of family members of all these different kids, different socioeconomic backgrounds, different education levels, different—have been told different things by clinicians, and they're coming at you with a million questions. And you could spend your entire life just trying to help all the families. But you're also getting pulled in this group of other patient advocacy leaders and scientists who will talk to you, clinicians, and you're like, "Oh, we need to do this, we need to do this, we need to do this." And it's it's a real time challenge.
So the specific example there was, there's a wonderful company here in San Francisco called Citizen Health, and they built a platform—whereby they built it for cancer but they grew it to rare disease—whereby patients can, with with a cancer or rare disease, can go, can sign up. They collect all your medical records. Now they have a cool little AI in there that helps you interrogate them, but it's super helpful to have those medical records, and then they can let researchers at those medical records deidentify it and and learn about the disease. So that and that kind of speed for rare disease is really important. So I was totally impressed by Citizen, and I started working with them, and I needed to recruit all my families to sign up for Citizen. But who is this guy, Mike? He just got diagnosed. My kid's 10, his kid's four. Why is he telling me what to do? And I would and I had a couple of volunteers helping me, Virginia and Peter, and we would call families, we would send them emails, Facebook Messenger. And I would come home sometimes like, "I'm so mad. Why won't people do this? This is how we help. This is how we put Singap on the map. This is how we make progress."
And my wife looked at me one day and she said—she's she's the smart one—and she said, "You, you know, I know this is hard for you to hear, but a lot of people think you're a jerk. Like, you're kind of pushy." You know, I I think she might have used stronger language, honestly. And and she's like, "You, you know, you got to you got to let people get to know you." That's what she said. She didn't say—she said, "Maybe you should do some videos. Maybe you should let people see how much you really care and why this matters." My wife says something, I normally do it. So I started googling videos, YouTube, how do I do videos? I don't even know why I was googling that. But and then I was like, "Oh, there's a thing called a video podcast." And that just immediately made sense to me because then you don't worry about distribution, right? People can sign up, they can get other ones. Let's try this.
And we had a small board back then, and I went to the board and I was like, "Hey, I'm going to do a video podcast about Citizen and about Singap." And and they were just like, "No, no, this is this is such a bad idea. Like, you're going to you're going to you're going to annoy a lot of people. You on an open mic is just a bad idea, Mike." And I'm like, "Okay, you're probably right, but let's try it. Like, if it's terrible, we'll just delete them and pretend it never happened." And I start and I put out the video podcast—these are all online, these are all still you can go listen to. And people listened, and people replied, and people started signing up. And people—after a couple weeks, people like, "Mike, where's episode three?" You know, I was like, "Is this is this supposed to be weekly?" Might get to it. Yes, I was meeting my goal of getting people to New Citizen.
But what I was really doing was was sending out a like a a news brief to these families all over America, all over the world actually, who have this ultra rare disease and don't know what's going on. And I was giving them that information, and it's become such a powerful tool for activating our community, for building our community, for getting people to find it, and for and for sharing precious information. So that—that's kind of the short version of the where a sing and it now it's called the cure singap one podcast um. We used to call it sing gap 10 because the goal was to keep it at 10 minutes; for a while there I kind of fell off the wagon, they got really long, and then now, you know, LinkedIn and other platforms will only let you post videos up to 10 minutes, so I'm back to the 10. Closer branding to the organization, too, so I I like that change.
Anthony Shop: Okay, why did you trust your instinct, though, when you could have just listened to the board and go, "I'm not going to do that"? Like, what was it you kind of—there's that voice that tells us to do something, and then there's so many people who tell us to not listen to the voice that you—you did it. Maybe it was your wife's voice was the voice that you listen to, but just would love to hear that, because others, I know other leaders sometimes have an idea to do something and other people around them, whether it's their comps people or their board or their spouse say like, "I don't think you should do that," and it's kind of easy to just not act. But you did. So tell me a little bit more about that.
Mike Graglia: Yeah, I you know, my my wife has good ideas, and and I I am a fan of efficiency and iteration. I I think it's important to try, and if it's a mistake, you move on. But if you don't try, you never know. And so, you know, I was like, "Well," you know, like I said in the story, I said to the board, "Let's just do two of them. If it's terrible, it's on me. I don't care. And let's move on." And and so I don't think it was a some deep well of confidence. It was, I was looking at a critical need which was getting people to trust me and to take action. And I realized very quickly even then—I mean, right now I have 1,700 patients worldwide that I know about, 500 of whom are in the US; then I had maybe a hundred, maybe 200 in the US, right? And I and I was already overwhelmed. I'm like, "How am I going to talk to all these people? Do I have to really call every single one of these people and get them to sign up for this? This is crazy."
And just the the beauty and the efficiency of of recording at once and being able to send the video out and getting people to to understand why this was so important. Because in fairness, we don't—you're not trained for rare disease. You're trained for disease: I have a disease, I go to doctor, I get medicine, everything's fine. Rare disease: I go to doctor, doctor has no clue what I've got if I've been lucky enough to be diagnosed, and there's no medicine and they're they're like, "Well, good luck, go home, maybe try the internet." When the doctors are sending you to the internet, you know you're in trouble, right? So it was just a—it wasn't it wasn't deep confidence as much as a willingness to try in the face of a of a very serious problem, which was activating and supporting patients.
Anthony Shop: I like how the doctors are sending you to the—you know, you're you know you're in trouble because they always tell you not to not to go to the internet. Exactly. Um, you've been doing this for a while now, and I would love for you to share some of the things that you've learned about the power of having a platform like a video podcast, how you can build community that way. Tell us what you learn, how long have you been doing it exactly, how many episodes you got out there, and then, you know, what have you learned from doing this?
Mike Graglia: Yeah, I've been doing it for five years um. Somebody just—I just hit episode 200, so now I think I think I'm going to record 205 today um which I'll put out tomorrow. But I'm averaging about 40 a year, which tells you I'm a little inconsistent, but it's okay. So I I just I just pump them out, right? And for me, it's a way of saying, "Guys, this is what's important now." And when we're having a particular recruiting campaign, I talk about that. When we have an exciting paper, I talk about that. When there's uh industry developments, I talk about that. But it's it's it's a powerful platform. Like, I I really started it and I and the ethos of it is very much Mike talking to the families, but I've I've walked into companies and they're like, "Oh yeah, we we all like we all listen to it."
And then one company we were we who has us on their pipeline had some good—had some good uh information, good news come out, and I talked about it. And luckily, you know, a long time ago I got an MBA so I I used I used the correct words, but they—I got a call the next day: "Hey, our investment relations department talked to you and or he heard your podcast and they were—they just want to make sure you're clear on this point." They weren't correcting me; they were just like, "We, you know, Mike's going to talk about—" And I was like, "Why do they care about what this guy is saying on a rare disease p—?" So so companies are listening to it, other rare disease groups are listening to it because they're trying to copy us. And and that's great; I think we should all copy.
But for—but the—again, it's all about the credibility and the trust with the patients, right? At the end of the day, what what I'm doing is I'm trying to get companies to make a brand new medicine, and that only matters if families put it in their kits, right? Brand new medicine, first in human—why on earth would people put that in a medically fragile child? Well, because it could reduce their symptoms and improve the rest of their lives and their family's lives, but it's still a big leap. And so what really matters is having trust and connection with the families, and and you you can't expect someone to get a phone call from a stranger and be like, "Oh yeah, let me—which hospital do I go to to subject my child to this thing that I don't understand?" That's crazy.
So it's it's really—I I view this as as part of my job of constantly building the relationship and the rapport and the trust while also sharing the knowledge, right? Helping people understand these these different concepts that will be used in these medicines so that when it is go time, we can move quickly. And and I think time and again I have met families at conferences, I have gone to people's homes, and I have walked in with—you know, always nervous to meet someone for the first time and and make sure we have a good interaction. And a few times they've just been like, "Mike, I I just feel like I know you. Like I, you know, like I have watched so many of your podcasts." And and being welcomed in with that warmth when when it wasn't a given—I, this is this is I—if I miss a podcast episode, something something bad is going on in my life, because I I I really think this is one of the best uses of my time.
Anthony Shop: This episode is brought to you by the George Washington University's College of Professional Studies. With in-person and online programs ranging from master's degrees in public relations strategy to certificate programs in digital communications, GW offers more than just the credentials to help working professionals get ahead; it prepares them to be leaders in their field. Check out cps.gwu.edu for more information.
I want to underline a few things that you just mentioned. So first of all, when we talk about just how you could use this as a one-to-many platform um we just uh had an episode with uh the current um deputy secretary of the VA and he talked about, you know, he has to go show up in person, he goes to town halls, but he'll hear a question come up like repeatedly at different town halls, and then he says, "Wow, I should use that as part of my uh 'Glad You Asked' YouTube series so that he can reach more people." And so I just want to kind of mention connecting that offline and online, because I'm hearing that from you too, is that you know, you're connecting with all these families, but you can't have a call with, you know, 1,700 different families every week or month or even year. And so you can take some of those themes and you create a one-to-many platform that people can connect, and then you become a magnet. They're finding you, they're finding that answer from you u—they may watch the video but never even reach out to you directly, but you're still helping them. So I think it just shows a type of influence.
I also just want to [talk] about the type of influence um when people think, "Well, why would you launch a podcast? Who do you have to influence?" and we kind of started off the conversation with who do you have to influence to achieve impact? Well, you know, your board's come on board with this, obviously, so you know, we got that group. But you have these industry partners—you're going in their office and investor relations is listening to your podcast, and it's really helping to show them what the patients are saying and what the patients care about and the families care about um. So you're influencing lots of different stakeholders through this mechanism, and I think that that's like a really important thing for people to hear.
And then I want to talk about what you said about trust and credibility and the importance of that, and you alluded to this story. But I remember when we met before, you talked a little bit about some uh—maybe nervousness is the right word—of going to connect with a family and feeling like maybe you wouldn't have a lot in common, and then because of how you show up and because of how you communicate in your video podcast, the family saying, you know, that they really felt like they know you. Talk about that a little bit more, because I think hearing ways that you—just practical ways that you've earned trust and built credibility from folks is something that any leader can take away from your approach.
Mike Graglia: Yeah, yeah, and I and I want to thank you for the "Glad You Asked" uh verbiage, because that that's—I'm going to do that, because that is exactly what happens. Like, if if if I hear a question three times, I'm like, we got to put this in the podcast, because I'm already tired of answering these um.
So the story you're talking about is: when your disease is named after a gene, everyone has a specific mutation that causes that disease. And my son has a very weird mutation. And and when families come to the community, we ask them to share their mutation, because that can inform a lot of understanding about their disease and how it's going to go. And and so most of those, I get to see them as as as we collect that information. And I was flipping through one day, and I saw a mutation that was was identical. I was like—you know, turning the pages—and I—"Wait, what was that?" And I see my son's mutation, but on another kid. And I'm like, "Where is this kid?" And they were in—they're in the central valley of California, which is not far from where I live, well a couple hours. And I was like, "I got to meet this family," because those kids were 18 and my kid was probably seven or eight back then. And I said, you know, "What is my son going to look like in 10 years, right?" That's the immediate logical question.
And and I'd never met another kid with Tony's mutation. So I call this family up and I say, "Hey, I would love to meet you. Can I come out?" And they say, "Yeah, please, you're welcome." And I drive out and and you know—like, you know, I show up, I'm I'm—I am who I am, right? I'm—I just show up, I got, you know—I pull up in my in my car and I get out of my car and I'm all—I'm all dressed up because I just been in another meeting. And I and I'm at a house that is in the central valley of California, and I'm—and it was immediately obvious that I was going to have a lot of—not a lot of common ground with this family, right? It's a nice way of putting it. And I was like, "Oh my god, I hope I don't come off as like the—I hope I—I really have so many questions for this family. I want to meet their kid. I want to understand what they're doing. I I hope that the the obvious differences between our lives don't create gaps."
And and I and I walked [in], and they very kind family and they welcome me into their home. And I walked in and I meet the mom, she's very sweet, and the dad comes in and I'm like, "All right, this is—this I got—this has to go well." And he just gives me this hug, and and that was where the "I feel like I know you" line comes from. And he's like, "I have watched all your podcasts." This guy's a—this guy's—this guy travels a lot for work and uh, you know, he just he just tunes in. And I was like, "Oh." In that moment—and and then it was great. You know, we had a great conversation. I learned about their girls. I told them about Tony, and um and we're still very close, right? That family still comes to events, and I still I I still keep tabs on them and make sure they're doing well.
So it's a powerful tool. And I—I mean, if any—I think this applies to a lot of communities; you would have better perspective on that than I would. But when you are a small army trying to influence a huge and disperate population, what I always tell people is start a podcast, right? Is, this is such a potent tool for amplifying your voice in—at this time. And even though there's so much noise out there, you know, we all have these little niches, and rare disease is about as niche as it gets. And you got to find people all over the world and be—actually, better—you got to have them find you. Well, you don't have—I don't have the energy to find them all. People find us now.
And that's the other power of the pod, right? You you post to your whatever platform, and that distributes to Apple, to Google, to Spotify, to what—to Amazon Music to whatever else, and then the signal just continues to amplify. And when people search for you or Singap One or your disease or your issue, boom, you pop up. It's it's it's really powerful.
Anthony Shop: So I think there's some somebody—every time you say something, like, there's like literally three lessons we can extract from that one story. But the authenticity that you have, the connection—one of the things about your style is a podcast can be like like a like a scripted sort of, you know, and there's, you know, we love those sort of produced—I mean, I love those like NPR style, This is American Life. But then there's also like the "Hey, I'm just going to talk to you, I'm going to have a conversation." And that's a big part of your approach. It's um—yeah, I'd say unpolished, right? It's not that it's not high quality, but it doesn't feel like you overly prepared. It makes it very accessible. And I think hearing that dad come up and give you a hug and say that sort of shows how your approach helps people who don't know you feel like they know you so that you can break through.
And I think there's a real lesson there for leaders about how we prepare to create content, how we do storytelling, you know, whatever language that we want to use, and maybe some lessons that some of us need to unlearn. And I wonder if you could talk a little bit about your approach to that and just sort of your thinking on that sort of polished versus unpolished communication and just what you've learned from people's reaction to how you do it.
Mike Graglia: Yeah, I mean, I've I like—you know, like I said before, I iterate a lot, right? So I've iterated with with—you know, I think in the early years I just got up there and talked because it was—I was just working around the clock and I was like—and then I would write my notes and then I got really long and then I started writing the notes beforehand because writing the notes after was crazy making. So now I write the notes and then I try to speak to the notes which—which I'm constraining myself a little bit. But the notes are just like bullet points, right? What you see on my show notes is what I'm reading.
Anthony Shop: You're using those as like—you're talking, because you don't sound to me—I've checked out several episodes—you're not reading a script.
Mike Graglia: I'm not reading a script. You would not—if you would read a script, I would say, "Wow, you should win an Oscar," because it's not—it does—you don't you don't come across as reading a script.
Anthony Shop: But you have a message that you want to convey. It's not that—
Mike Graglia: Or I should get a new writer, right? But I think that um I, you know, you were you were kind in the way you described. I would—I—and what I say to people, my own words, is this is a low-to-no production value podcast. Literally, like, I type up my my bullet points, I sit in front of a—I sit in front of this computer and I talk for 10 minutes. And I'm staring at that little timer and at 9:58 I wrap it up. And it's um—and I do think that it—I'm just keeping it real. I'm not trying to create distance for my audience, right? I'm trying to make sure people understand that that there's a real person fighting like hell for their kids and we're on the same team.
And I need them to give me donations, I need them to give me literally their blood—I want their blood and their kids' blood—and I want by—I want their time too, I want them to volunteer for me, I want them to give bio samples, I want them to donate. Like, they have to understand that we're real people doing real hard work over here. And I don't—if I thought that um I would impress more people or raise more money by having a super polished podcast, I would probably invest in that. But I I don't see the value. Like, this is really about trust and credibility while sharing precious information that I don't know how to share faster.
You know, what—in the early years, I spent so many hours writing these really thoughtful blogs that nobody read them. Nobody has time for this stuff anymore. And it's it's really—I I find this is at the end of the day, this is how humans have engaged face-to-face, looking at each other, deciding if they can trust and work with each other, well before there was the internet. And it's going to be true well after all the tech comes and goes, right? This is this is how humans interact.
Anthony Shop: And I want to hit on something else that you said earlier that I think is really important. You don't have time or the ability to go find everyone; you've created a platform that makes it easy for them to find you. And obviously, in the case of Synap One um there's a small universe of people who know what this is and care about it. But the people who do, I mean, they search for it—like, you're going to pop up. That's maybe one of the, you know, advantages when you have a rare disease, is that, you know, it's something that like—that's that's not getting confused with a lot of other things on Google. But you have created this platform where these families and researchers and, you know, industry folks from all over the place—because of the platform you've built and because you're on so many platforms, you know, folks can find you on YouTube, that this comes through. And I wanted you to just share a little bit more about that because I think there's a special type of influence that allows you to be a magnet and pull people in the way that you have.
Mike Graglia: So what's nice about Singap One is, unfortunately, no one else is fighting me for the space, so—
Anthony Shop: You mean there there are there are there's a few random uh podcasts out there from other people who've talked about their kid and there's this that and the other thing, but—
Mike Graglia: Certainly one of my goals is that when a newly diagnosed parent gets in the car at the hospital two hours from their house and they sit down and and they can't even remember the meeting they just had and all they know is Singap 1—when they type Singap 1 into Google, like any listener right now, go ahead and take out your phone, type Singap 1 into search, hit search—hopefully, like, half your screen is either Cure Singap one or or this podcast. Yeah, right? Like, that that's the goal, is so we catch people. And and and that's really really important to—if you want to own a topic or a a disease or a gene, you got to flood the space. You got to put a ton of content out there. And the internet rewards regularity, too, right? So by being semi-regular—I'm not perfect, but every week I try to put it out there and I try to be current and I try to link to things—five years, it it, you know, the internet respects that and gives it to you.
And I want to point out one other thing, and it's it's true for rare and it might be true for other areas—I'm sure it is. I have families who are like, "Help me," you know, and they call us and they work with us and they talk to us. And I have families who reach out to us. But then I have families who, because they're because they're they're struggling with despair, because there's cultural reasons—they don't want to talk about a genetic issue in their family, even though when I say genetic, it's not hereditary, right? This is a spontaneous mutation; it's not in their family um. They don't want to reach out. There's cultural reasons, there's personal hesitation, there's depression, whatever it is, where they don't want to connect, but they are desperate to know what's going on.
So so there's the people I know about, and then there's the people I don't know about who are watching intently. And what I understand that they don't yet is their kids are going to get bigger and harder and they're going to need help. So they're going to eventually reach out to us, but I'm happy for them to get to know us and understand that we're serious and credible and maybe they'll reach out to us sooner because then we're going to help each other. And so I think you—your question was about being a magnet, and I think we achieve that by consistently flooding the space, making sure we are out there, we are seen, and and and these pods—some of these pods just take a life of their own um. But also I'm very conscious of all the people who are, you know, the families who are watching but not contacting us, the companies who are in early stage and working on our disease but they don't want to tell us yet. There there's a lot of people who want to know what you're doing but don't want to talk to you.
Anthony Shop: Yeah, and having a podcast like this gives them the chance to to feel that connection with you. Yeah, and you know, a lesson I'm remembering from one of our past chief influencers, Yasmine Arrington—she was named one of the CNN heroes for a nonprofit that she founded called Scholarships—and she said, "You never know who's watching." And she told a story about how she had connected with somebody and applied for something and then they watched her on social media, and then when she got contacted by CNN they're like, "We've been watching." And she's just like, "I had no idea." And so you never know who's watching, you never know who's listening. Sometimes they reach out to you, but sometimes they don't, and it makes an impact.
And you know, you'll find out about some of them as as time goes on, as you have um. But it's one of the ways you build community. And your community is not a huge community, but it's famously an activated community. I mean, when you ask families to take action, they do it. They show up. How do you move people from that place of, you know, despair and and focusing on their own needs—which is a really real thing for for your families—to awareness and then to action um? You've done it so effectively. What has been your secret to doing that?
Mike Graglia: So in the Peace Cor I was a high school math teacher, and I think one of the things you you finally learn as a high school math teacher is people need to hear things like at least three times before they do it, even if it's the simplest stuff. And so I, you know, some of my podcasts are pretty darn repetitive. And I think, you know, for instance, like natural history studies: why should we do them? Like, I beat this course to death. But I think it's—I'm always explaining: if you do this, then this happens. So cause and effect.
But the other thing is, you know, if I announced a study, a Citizen—when I started it, was—we had 20 people. If you listen to the last episode I dropped, 204 um, I said we have 279 people in Citizen. And I don't know why that number is not 300. I'm always giving people numbers so that they're—you know, so then the parents are out there who aren't Citizen: "Wow, what do those 279 people have that I don't?" And and so it's a little bit of just basic human psychology, right? Like, you're missing out, FOMO, and this is why you should do this; you want to be included in this. And it's—it's what's important to understand about rare disease and singap and probably what everyone else is working on: things are happening really really fast.
And and what's—what's great about this is, because I have a a—I have a staff of about four people and a lot of volunteers, so I hear things. I I hear when families had confusions, people got upset about something, people didn't understand what something meant, whatever. And that trickles up to me, and I'm able to be like, "Wow, okay, if I've heard about this parent not understanding why we're doing this, there's at least another 50 out there." Yeah. And so if I can clarify that point in the next pod, I can nip these cycles in the bud.
Yeah, and I think the tr—the trouble is when you get when you let the—and I'm the executive, right? Like, if I normally—hopefully, if I say something needs to happen, it happens. So you know, what I'm doing is I'm trying to create a circuit where as soon as I hear things, I I I get the information to the community, I can course correct things that have gone off, and I can encourage things that are going well. And and that really really works. You know, there's always the usual—there's always the usual suspects: there's like five people I can tell you, my podcast comes out, they listen to it, they they call me, they comment—I love these people. But there's also people I've like not talked to for a year, and they're like, "Hey, I listened to this, and I want to ask you a question." Yeah, oh yes, right?
So it's it's just incessant comm community. It's it's connecting the dots. It's explaining. It's sharing the counts and the numbers and constantly urging people to move forward. And that—I, that's what I do. And hopefully, I think—I don't know if we're doing enough for the families who are who are stuck in despair and and um but we what we choose to focus on is is working with the families who are motivated and trying to trying to make progress. So there's a door for all of us to walk through.
Anthony Shop: Yeah, and you said something in passing that I'm sure other listeners kind of went, "That surprises me," which is, you know, you got like four people on your team. But when you look at your organization, it feels so much bigger than just your, you know, employee headcount. And even when you look at the website, you have really featured so many other stakeholders and folks who are involved that you get the sense—because you think rare disease, it doesn't affect that many people—you get a sense this there's like a lot more to this. And it to it feels to me like you've been very intentional about things to punch above your weight. I you—we've heard about consistent communication. I seen on the website how you make like your volunteers and others so visible um being so, you know, religiously consistent about the way you show up and get your message out on platforms like YouTube and give that insider information and your podcast, etc. So say a little bit more about, especially because of your background in business, that what you've learned about how to punch above your weight as a small organization but make a much larger impact. We've had a few other episodes where we've had that as a theme; one of my favorites was the ambassador from Likenstein—you know, smallest embassy team in in Washington—and they kind of punch above their weight, too um. So say more about that.
Mike Graglia: Yeah, it's it's weird. It's something I'm still learning about how we're doing it. I mean, on the on the headcount thing, we raise—we've raised um millions of dollars; about a million bucks a year is what we end up committing to science. And I could talk for a lot of time about how we make sure that money is catalytic and and is and is leveraged. We don't just throw money at the usual things; we try to seed things that will lead to more work elsewhere um. But you know, if if the goal is to fund science and to fund research and to create and to facilitate the creation of medicines, then you don't want to spend too much on headcount. Simple, right?
People cost money. And and I am very fortunate that I have four parents—actually, they're all moms; there's me and four moms and um well, three moms and a sister, actually. But these incredible women work for Singap 1, and they all are underpaid. I mean, I'm—it's it's a terrible place to work; you're underpaid and you have to [work] for me. But but they all work tirelessly because they're in it. They're all related to us in Gapian, and and they're all desperate to see us succeed. And then on top of that, I have a a board of 14 families, and I have a different committees led by volunteers, people who have day jobs but want to do what they can. And just by constant organization and, again, the communication of the pod, right? I—the pot is part of me activating the whole team and saying, "This helps." So that—the part of punching above our weight is leveraging the volunteers and being really judicious with with how we spend our time um.
Part of punching above our weight is how we give grants. As you mentioned, like, in my past career I've worked for the Gates Foundation and Emerson Collective um. I've given grants before; it's it's harder than it sounds. And and I I do think I have some skill there, hopefully. And then the other part of punching above our weight is is—I I think this pod, honestly. Like, you know, we are so visible. I think there's—I know a lot of rare disease groups sometimes are just struggling to do one or two things. And I do think we are cursing gap one should be proud of itself; we we get a lot done. But we let people know what we're doing. And I think the trouble is, I I—some of my peers in rare disease are so busy toiling away at something but not telling others what they're doing. Yeah.
And I'm kind of like, "Start a pod." Um, and and as an example of of how our influence and our presence has helped—I mean, Camp 4 Therapeutics is a company who is working on curing on on a medicine for curing gap one right now, and they were doing a capital raise. Phase one, two trials for rare diseases cost a lot of money. And they they were they were at a certain—they were stuck at a pro point. And they called us and they were like, "Would you invest a million dollars in this private placement?" And we—we have a million dollars because we we commit millions of dollars every year and it takes time for that money to go out the door. So I said, "Okay, but, you know, you need this much and you have this much. Million dollars isn't going to change the future, guys." And they're like, "Yeah, but if we got a million-dollar investment from Curing Gap 1, our investors would believe what we're telling them, which is we have a good relationship with Curing Gap 1 and you're going to make sure we fill trials."
Back to that trust and credibility, right? And these investors had watched the pod, and I was like, "All right, if you think it'll help—that's why we exist, right?" So I go to the board, convince the board we should invest a million dollars. Call them up, I say, "Hey, here's a million. We're in for a million bucks." They called me back a week, two weeks later and said, "Hey, we raised $100 million." Wow. So your million—you know, they—before that, they were at some other eight-digit number; I don't remember the numbers, but the the hundred million number is public. And and so they had to—investors, at a certain point—we put in a million, they were able to go back to investors and be like, "Look, we are working hand in glove with the patients." Yeah.
"Check out the patients, watch the pod." Th—more investors came in, and then more investors came in on that. Now they have 100 million, and that's 100 million is not like, "Yay, 100 million." Is enough to get us through phase one two and to to to make the necessary investments to get this trial to work. So that's an example of building up a public—the need for rare disease groups, I think, to build up a public persona, because that that's probably the best million bucks we've ever spent.
Anthony Shop: Yeah, you know um anyway, well, what you said there that kind of ties back—this ties back to is: you see people just toiling away doing the work, and obviously the work is so important, but not telling people that they're doing the work, right? And there's just this power in getting the message out, you know, not just to pump yourself up, but to help people. Part of what you do with your podcast is, you know, you're you're educating and you're helping all of these folks that gave you the visibility to have that opportunity to be part of that. And it really shows the role that patient advocacy can play in accelerating breakthroughs.
Um, we're seeing the role of patient advocacy shift. I've had several patient advocacy leaders on Chief Influencer, and we've learned about venture philanthropy, and we've learned about, you know, some of the other things that are happening in the space that make such an impact. And I love hearing that example because we hadn't talked about it before—going from that million dollars that you all brought to the table and then they were able to raise $100 million which, you know, again in this space is obviously there's still a lot more work to be done but I mean that's pretty impressive. Four-person organization or five-person organization helping to make that happen. I mean, it's incredible.
Um, as we kind of, you know, come to a close—I could keep talking to you all day, Mike, I just love this—but just for leaders who are listening and they're trying to change something that feels impossibly complex—you know, policy, healthcare, culture—what's a lesson in influence that you wish you had learned sooner?
Mike Graglia: That's a—that's a solid question. I I think it's back to your question about being unpolished. I think when a lot of—I think when I started, when other these leaders started, we had—we struggle with impostor syndrome and we struggle with, "Am I doing this right? Right? Is this thing on? What, you know—" And at the end of the day, if you're in that seat because you're a leader of an organization or because you're a rare disease parent who's decided to start something, you don't have time. Your mission doesn't have time for you to apologize and wallow in imposter syndrome.
I I give a talk to rare disease leaders every year, and I—that's one of my first slides. Like, you just have to get out there and say, "All right, this is what we're doing. This is what I'm doing." You have to be willing to be wrong. You have to willing to be made fun of. You have to be willing to get hard feedback back. But but if you're not willing to stand up and use your voice and share your plan, you can't honestly expect people to follow you, right? So I expect people to do what I say—that sounds terrible—I expect people to to get on board and do everything they can to drive for a cure for singap one. That's what I'm telling them to do. But but I can't really do that unless I'm willing to every week say, "This is what we're doing. This is why we're doing it, right?" And and it's it's it's just—you you you got to unapologetically you. So the answer your question is, you got to unapologetically use your voice and be willing to engage with the people you're trying to lead. It's not sufficient to just issue edicts and say go.
Anthony Shop: I think that's such a great place to end the conversation today. You know, when I think about some of the takeaways um not just that we discussed about but just what I've observed looking into cure one and looking into to you, Mike—I think there's some things that are themes that any leader in any space, whether they're rare disease or someplace else, can can take away. One is just the power of your own voice, which you mentioned, and that means showing up authentically. What—what's real for you. And there's some experimentation there; we heard that from you, trying different things.
You know, I like that specific tangible example you gave—that you used to just go off the cuff and write your notes, and you realize writing those notes first and then using those as a guide so that you're still unscripted but you have that direction. I think that's a really good piece of advice that any leader could use if they're trying to create content right there. It's a way that you bring your authentic voice forward but that you do it in a way that's not overly polished, right? It's not that it's unprofessional; it's just it's not overly polished.
The other thing, though, that I take away from you is this idea that we have to communicate relentlessly. We have to repeat ourselves. One of our past chief influencers said—a CEO, he's the chief reminding officer, Alex Worth from Cororum—and it was like, "Yeah, that's actually a good point." You have to tell people what you're going to tell them, they got to tell them the thing, and then you got to tell them again what you told them. And you have to continue to repeat, because folks have short attention spans. If they're listening to a podcast, they may be multitasking—they're doing the dishes or something, they're driving—and it's not like they're going to remember every single word. So you do have to repeat those things.
And I like how you gave an example of how you repeat it, but not in the same way—talking about the target of the folks who are um, you know, sharing their their their personal information, their their genetic information uh to be part of these studies, and how it's like, "Hey, we're at 30 and now we're at 270, but why aren't we at 300?" And so you're repeating, you're reminding, but you're doing it in a way toward a goal that gets folks motivated. And by doing that over and over, you have built a community with people, some of whom you've met, some of whom you haven't.
But you've also become a magnet and you've pulled people in. They find you—they look for Singap, they get that diagnosis in the family, and immediately your organization and your podcast is showing up. And now they have a friend who they've never met, who's a guide, who's giving them that information. And I think that's a really great way for a leader to show up as a chief influencer—to be that fierce advocate, to be that wise friend, to be that guide who can help them along the way.
And I just really admire how you do that, how you've built that up over the last 5 years with everything else going on in your life, and you've kept that going on and on um. And I think there's some wonderful lessons for our listeners about how to influence through relentless communication, through that authenticity um and just uh, you know, punching above your weight through those tactics. So Mike, thank you so much for being with us today. I really appreciate you sharing your story.
Mike Graglia: Thank you so much, Anthony.
Anthony Shop: Chief Influencer is a production of Social Driver. We help clients transform complexity into clarity with people-centered strategies. Whether you're looking to elevate the influence of your brand or of your leaders, check out socialdriver.com to learn more. For show notes or to nominate a guest, visit us at chiefinfluencer.org or follow Chief Influencer on LinkedIn.
