Stuttering As a Chief Scientist and Exploring Genetics

Transcript

Maya Chupkov:

Jay struggled with his stutter at school. The fact that they were trying to help also made it clear to me that something was wrong with me that I had to fix. And I hated this room. That was a sneak preview of the crowdfunding video for my first documentary short on stuttering. We're calling the film rock of hope, and it's going to inspire hope for people who have stutters all over the world.

We completed our first day of filming with Jay Jordan, who you just heard he's featured in the film. Thanks to a grant from California humanities. We're now ready for the next phase of production, and in order to complete the next phase, we are launching a crowdfunding campaign during Stuttering Awareness Week on Friday, May 17th with a virtual kickoff event.

The guest speaker of that event is renowned writer Isaac Bailey. He's the author of My Brother Moochie and an award winning journalist. Details and RSVP link are in the show notes and on proudstutter. com slash events. In order for our crowdfunding campaign to be successful, we need to gain visibility and traction starting on day one.

90 percent of successful campaigns hit 30 percent funded in their first week. The campaign goal is to raise 24, 000 to finish the film. If you'd be willing to help me by pledging to support the campaign on launch day, Friday, May 17, that would be a great way to help make the campaign a success and get us one step closer to completing the film.

Oh, and I forgot to mention, we need to get at least 80 percent of the funds or else we get nothing. So each pledge is super important. And if you can't make a pledge at this time, we would really appreciate it if you could share it with your friends and family. And also post about it on social media.

Thank you so much, and we're so excited to go on this filmmaking journey with you all.

I'm Maya Chuka, and I'm a woman who stutters. Welcome to Proud Stutter, a show about stuttering and embracing verbal diversity in an effort to change how we talk about it. One conversation at a time.

Welcome back to Proud Stutter. I'm your host, Maya Chubkov. Today joining us is John Finn. He is the Chief Scientific Officer at Tome Biosciences, where his mission is to cure rare disease. He's also a person who stutters, who is dedicated to stopping the stigma associated with stuttering. Welcome, John, to the pod.

John Finn:

Thank you very much, Maya. It's a pleasure to, uh, to Be here. I really, really appreciate the opportunity and you know, all the work that that you're doing. So thank you.

Maya:

Yes. We're so excited to have you. And by we, I mean me. So, um, so let's first talk about your upbringing. Um, where did you grow up and can you talk about some memories that come to, to, to, to you around your, your, your stutter at an early age?

John:

Sure. Uh, so yeah, I'm actually, uh, from Canada. Um, I'm the oldest of five kids. My mom's the oldest of nine kids. I'm the oldest of five. I, I have two brothers and two sisters. Sisters. Um, interestingly, my two brothers also, also have a, um, a stutter. Although, um, I'm probably the, the best stutterer in the family. Like, my stutter is a lot more severe, you know, than theirs is.

I think most people wouldn't even really, you know. But, but it definitely runs, runs in, um, my family. Um,

Maya:

and how was growing up with a stutter?

John:

Growing up with a stutter was hard. Uh, it, it really defined my life. Um, and not always in a good way. Um, I spent a lot of time, uh, praying, praying it would go away. Just like, why me? Why can't I just be normal? It really It really, really affected me a lot. I spend a lot of time in speech therapy. Um, I'm, I'm being fairly fluent right now. Um, in part it's because we're talking about stuttering and there's always a weird thing when, when I'm talking about stuttering, I tend to stutter less, which has been very frustrating for my, uh, speech, um, speech therapists over the years.

We had times where they had to go into another room and call me on a phone to actually make. Make me um, uh, I remember that too Uh, so anyway, but I I did a lot I went to intensive courses I did a lot. I tried hypnosis. I tried like everything basically everything I could to um to avoid it, um

Maya:

a question comes up for me around like identity so I Didn't really identify with stuttering when I was Growing up because it was something I was so ashamed of and so I tried to like distance myself as much as possible from like other people who stuttered or like, you know owning it as myself and now that i'm kind of owning my stutter more and, you know, being more open about it. I'm kind of balancing like being a person who stutters and owning it, but also not letting it define me. And so balancing those two, the things I'm wondering if anything, if you've been kind of, you know, you know, balancing being open, but also not letting it define you.

John:

Absolutely. And it is an interesting balance.

I, I had, and still have at times, shame associated with it. And it's, um, I feel like I'm imposing on people. I feel like I make people feel uncomfortable and awkward. And I, and, you know, I used to like apologize. for it. I've stopped apologizing for stuttering. What I do now is I explain what's happening so that they will, they won't feel uncomfortable.

Because what I've learned over the years is that oftentimes they're responding to me. And so if I'm feeling uncomfortable and if I'm really struggling, uh, that makes them feel uncomfortable because they don't know what's happening. going on, they don't know what to do, and so by addressing it head on, it can diffuse the whole things.

But it is an interesting balance because I, I am a person with a stutter, uh, but that is a part of me, it's not, it's not me. Like, I, you know, I feel like, you know, I feel like, I, of course, I define myself as a person who stutters, but that's a very small part of me. There's a lot of other parts. I'm a scientist.

I'm a father. I'm a friend. I'm the, like, all, all, all of, you know, the, these, these things. Um, but as I've gotten older and I've come to start accepting myself as a stutter, it's naturally made my fluency better, I think, because I don't have this pressure to always be fluent. Uh, and also I've learned, I've learned Things that affect my fluency. I've learned how to have more good days than bad days like all of these things. I've had to Experiment with and really, you know learn as I go.

Maya:

So you're a scientist for a living I'm really curious. When did that kind of when did you first discover that you wanted to? Be a scientist or find an interest in the sciences.

John:

Yeah You So I, I can tell you exactly when it started. I was in high school. I think it was, I was in grade 10. It was in science class where we were learning abouttranscription and translation. And what does that mean exactly? Inside our cells, all of our cells are these Little ma little machines that basically read DNA and turn that DNA into message RNA, and then another machine turns that message RNA into, uh, proteins. And that's, that's what we are. And when I learned about that, and I realized that every single cell has these, all these little machines doing all this work, it blew my mind.

And I felt like I was almost hit, hit, hit by a bolt of lightning. I couldn't, I couldn't imagine that this was actually happening. Um, and so that's when my interest in molecular biology started. Which is really understanding how, how, how things work inside cells. Uh, so that, that's, that's when I really got hooked on that field.

The other thing I've always been interested in though is, is, is, is healing. And I want to make the world a better place. And that's why I've been obsessed with gene therapy. Um, right from the start and so I've been actually this is going to be year 25. I've worked in the field, which makes me feel old. Um, but essentially, when I went off to grad school, it was, we hadn't even sequenced the human genome at the time it was underway, but I was convinced that in the future.

We're not going to treat people, we're going to cure people. If you know what the broken gene is, if you fix the gene, you fix the disease. And so I've been obsessed with that concept right from the start.

Maya:

And how has, how have things evolved since you started in this field?

John:

I've learned a lot. The field's learned a lot. Um, but now, We're in an age where there are now people walking around cured, um, after one shot. It's not a lot of people yet. It's not a lot of indications. We're starting in rare diseases because that's where it's clear. We know, we know a patient has a broken gene and so we know exactly what to fix.

Other things like rheumatoid arthritis or Alzheimer's or Parkinson's, those are more complicated. It's not, you've got this mutation and that's what you get. Um, I'm talking about things like hemophilia. You have a broken factor VIII gene or a broken factor IX gene. If you put in a functional copy of that gene, you cure.

And actually that, that, that, One of the first first approved drugs was that exact drug. And so now there are some men actually walking around with hemophilia B that are cured. Um, you know, we'll see how long it lasts. It's going for years right now. Um, but that's what I've been focusing my, my, um, work on really.

Maya:

So how has your, um, how has your journey to where you are now? How did your stutter impact that, you know,

John:

it affected me in a few ways. One, one of the nice things about being a scientist is that, you know, it's science, right? There's not a lot of talking involved. So that's what I thought. There's actually a lot of talking involved and that has been very challenging for me.

Usually with my, my colleagues, you know, they get, used to my stutter. I get more comfortable. It's there, but it's not really a big deal in everyday day, day work, where it has been a major challenge for me is giving presentations, public presentations. This has been, and still is, a real issue for me, a challenge, and it's something that I, I force myself to do.

I do not like doing it, and I usually stutter a lot more when I'm giving talks. I remember some presentations, um, you know, big conferences, you know, hundreds of people in the room, and I'm up on the podium, And I can't get a word out, and I am struggling, and I am, my head is jerking, and every, and I'm going, over time, I've got the lights that say green, orange, red, and the red is going, and the organizers aren't quite sure what to do.

Um, that's been me. Many times up on stage. I remember one time, um, I had two different projects going and I sent them in for abstracts and actually both of them were chosen for, um, oral presentations. I ended up having back to back presentations in the same session. And one of the things I learned actually, so actually after the first one, it was a challenge. Really hard. And then I had to give the second one. Everyone was surprised because it, you know, that's not usual that, you know, the same person speaks twice. And in between the two sessions, I actually made a joke. I said, um, I'm as surprised as you that, that they gave the guy with a stutter two talks in a row. Now, up until now, I had not been disclosing my stutter up front. As soon as I said that, First, everyone laughed a little bit, but everyone relaxed, because all of a sudden there wasn't an elephant in the room anymore, and my second one, I still, still, um, struggled with it, but it was so, it was a lot easier, and that's when I learned to, to start self disclosing up front, and that's something I do with every oral presentation.

It doesn't always mean I'm fluent, uh, but it means I don't have to worry about it and it sets the audience at ease and so that's something I learned early on and I wish I had learned it earlier. Um, but yeah I, over the, the years, I have to give a lot of these talks and they never get easier, um, but I always make myself do it.

I never, you know, there's times when it's easier to let someone else do it and I never let that happen.

And what made you want to make that joke? Because I feel like how it How I received that story is you were really listening to somewhere inside yourself of like I like I Like this is this will help me like being now I will say nowadays I wouldn't have made the same kind of joke because it's almost like Making fun of the fact that I stutter, so nowadays I would not make that.

I, I mean, I, I'm still very open about it, and sometimes I'll joke about it, but it's not in that way. I don't know exactly what it was. I think I I had to do something. I was desperate, um, and I needed to acknowledge what was happening. To acknowledge it, and I said it, and as soon as I did though, and afterwards, a lot of people came up to me afterwards and said, thank you for that.

That was, um, it was very brave. And as soon as, you know, as you said that, the whole room relaxed. So it wasn't just me noticing that other people also did, um, and commented on it. Um, and it's funny because I was so afraid of self disclosing, even though I'm not hiding anything. I know I sound fairly fluent right now, but, but there's old, old recordings of me, um, you know, up on stage and it's, Yeah. Yeah. No, I feel that too. I feel like, cause I, I also present publicly a lot as well for my day job and even now, like for my stuttering stuff too. And yeah, it, it's definitely, it definitely never gets easier, but I definitely feel more relaxed because. Let's say I do have a really intense stuttering episode because I'm kind of like you and that it Sometimes all the disclose and not stutter and people are like confused like oh, I thought you said you stuttered so I just always know that if I'm on stage and I Have a stuttering episode. I always have that in my back pocket where I can just say like, oh, hey You know, I just i'm experiencing a block I stutter so and then I kind of go back in so, um, it's nice to have some tools with you in case like you need to use them, um, I I I started to disclose Like almost every time but then it got really exhausting. So now I kind of just listen to my body. I'm like, okay I'm gonna I feel the urge to disclose early on so i'm just going to disclose but I don't Like I kind of just do a vibe check ahead of time and see like how I want to approach. Yeah each thing Yeah, yeah Yeah, it really depends on Who it is what the situation is I will say that the other thing I did early on is I joined Toastmasters, you know, I don't know if Classes. And so I made myself to that. Mm. Which was also very hard. Um, but it was something I, I, I didn't want to let, let my stutter went, you know? Um, although now the older I get, the more, it's not about winning, you know? It's, you know, it's so being myself now, but o over, over my, my life, I feel like I, it's been. My relationship with my stutter has changed. It was this, this thing I didn't like, I didn't want it, I had to beat it, had to overcome it, and now it's just, it's a part of me that I, I can manage.

Maya:

Are you open about your stutter at work with your like your team and stuff?

John:

Internally, my team knows that I stutter and it's, and it's almost a non issue there.

I will say every week I meet with all the new hires and I always introduce myself and introduce the fact that I stutter and I've got good days and bad days and it's, it's, it's more that I don't want anyone to feel uncomfortable or wonder what's, what's wrong. Because oftentimes, like every week, I give, um, a company wide, like updates.

I, I have, um. monthly meetings where, you know, I have to get up in front of the whole company, um, and talk, which is still something I don't love, love doing. But, um, you know, I make myself do it. And the more I do it, the easier it gets. Um, but I will say the biggest, like when I took this job, I was very concerned about how my fluency would affect my performance here.

Not scientifically, that, that part's fine, but there's a lot more to my job than just being a scientist. It's managing people, interacting with others, board members, investors, and actually last year when we were starting our fundraise, I'd never done a fundraise before. And there had been some questions from board members as well as some other people about, um, whether I should, I should be a part of the pitch and the pitch where, where, yeah, like we have investors, we go through the story, et cetera, et cetera.

And it's not that, that anyone thought I shouldn't, but the question was asked, Hey, will John's fluency affect our fundraise? And one of the most amazing things about this team at Tome, the leadership team, is that we were able to have that conversation with the entire LT. And we walked in, and I walked in first feeling like, like my stutter was kind of, um, my hurt the company. It was, it was a weight on me. But at our leadership team, we had a very open conversation about it. And I said, listen, if, if people are concerned that this will affect our ability to raise money, because Tome is a very, we, we, we are doing amazing things that cost a lot of money. Like we are raising hundreds of millions of dollars.

Um, and if there's concerns that I, I can't pitch effectively, Let's have that conversation up front. And we did. And everyone, like, went through. And I will say that the support I had from this team was just amazing. So I went in feeling like I was weighed down a bit. And I left feeling like, feeling, feeling, you know, like I had wings.

And we were going to see how the first, first, Um, um, calls went and then, you know, reevaluate and I think I've done 150 now or something plus and we, we have raised money and we're raising more money and I self disclose upfront and I have good days and bad days and it just, it didn't matter. But it was also, I think people appreciate the fact that.

I'm doing it even though it is hard for me. And again, right now, I'm actually remarkably fluent. I'm usually not this fluent. And on calls, it's a lot harder. But I think they appreciate it. And I think there's an authenticity that comes along with it as, as well. I'm not super polished. I'm not, Um, I'm, I'm speaking because I, because I know the science best and I, you know, I can advocate best for, for Tome and, you know, the team.

And I think that's really been reflected, but that was a major thing that I had to get over. Um, and it's been a great learning experience for me. Is there any. research around like stuttering and the genes associated with stuttering and like is there a way to like not that I would ever want to cure my stutter because now I like I love my stutter and it it's brought a lot of positivity in my life but

Maya:

Yeah, like, is there a gene editing here for stuttering?

John:

When, when, when, when I'm meeting like new investor groups or other partners, a part of how I self disclose up front, actually, I'll just, you know, I'll self disclose the way I do there. Um, you know, I say basically, um, um, John Finn, CSO of Tome, yada, yada. Um, you know, as you can probably tell, um, I do have a, um, stutter. If you ever don't understand me, please ask me to repeat myself. Everything is fine. This is just the way that I talk. My brother's stutter, um, you know, it runs my family. Maybe one day we'll be doing editing in the brain for that. Not the first indication, but, and then, and then I go into all, all of the other things.

The reason why I say that is because I want people to understand it's not because I'm nervous. It's not because I was abused as a child. It's not because of all these misconceptions that are out there. There is a genetic predisposition to stuttering, and it's not as easy as a stuttering Some old work came out where they found In certain families, there are clear mutations and genes involved with the, um, lysosomal storage pathways in the brain. These are basically classes of enzymes that help neurons deal with waste with like garbage. And it's very clear that in certain families there are. mutations that, where they don't kill the activity of, of these, um, proteins, they just reduce it. And that, to me, makes a lot of sense.

Now, I don't know what my mutations are. At some point, when I've got time, I'll, I'll actually do a whole dive into it. And I'll, I'll, you know, look at my own genes, my family's, etc, etc. But it fits with my experience of fluency, where there are certain things that I know, um, make for bad days. If I haven't slept well, that's usually a trigger for a harder day. When you sleep, that's when your brain is clearing toxins, and so it's almost like the threshold is a little bit lower. Same thing when I eat. If I eat, almost immediately afterwards, my fluency goes way down. And again, there's all these things in the body that the cell has to actually process. So anyway, those genes were found in certain families.

It's not that everyone who's jitters, you know, has, has those, but there's, there's a lot of interesting work, work actually going on there. And I think, you know, in the future, maybe, maybe if we can actually, actually identify causal genes, sure. I mean, maybe we could at it. Um, not the first indication there, there's, you know, more severe diseases out there. Um, it's not, it's not outside the realm of,

Maya:

Is, is there anything we haven't covered that you wanted to talk about before we end?

John:

I felt like my entire life revolved around my stutter for a very long time. And my advice is, um, you care way more about it than anyone else does. Um, and the, the sooner you can realize that and just be yourself, um, in spite of it, not, not feeling like once I'm fluent, then I can do all of these things.

Then I can get that job I want, or I can ask that girl out, or I can do all that. Once, once you realize I don't have to be fluent in order to do the things I, I want to do, that, that for me was a game changer. And, um, It didn't necessarily make me more fluent, but I feel like the older I'm getting, the more comfortable I am with myself, the less my fluency is an issue for me.

Uh, so, um, That's, that's my advice. Um, don't let it stop you from doing the things you want to do, because it's very easy to. It's very easy to say no to things and to take the easy road. And sometimes, I mean, I'm not saying, I always take the hard road. I remember when I was a kid, kid, when the phone rang, I would run away.

I would never answer the phone. It was like the most terrifying thing. Even now when my phone rings, I don't want to answer it.

Maya:

And that's it for this episode of proud stutter. This episode of proud stutter was produced and edited by me. Maya Chupkov. Our music was composed by Augusto Diniz and our artwork by Mara Ezekiel and Noah Chupkov. If you have an idea or want to be part of a future episode, visit us at www. proudstutter.com. And if you like the show, you can leave us a review wherever you are listening to this podcast. Want to leave us a voicemail? Check out our show notes for the number to call in. More importantly, tell your friends to listen too. Until we meet again, thanks for listening. Be proud and be you.