The hospital conversation that set a young epilepsy patient on the neuroscience career path

Jean Mary Zarate: 00:04

Hello and welcome to Tales From the Synapse, a podcast brought to you by Nature Careers in partnership with Nature Neuroscience. I’m Jean Mary Zarate, a senior editor at the journal Nature Neuroscience.

And in this series we speak to brain scientists all over the world about their life, their research, their collaborations, and the impact of their work.

In episode seven, we host a fearless researcher whose personal experience of epilepsy has spurred on her career in neuroscience.

Christin Godale: 00:39

My name is Christin Godale. I completed my undergraduate in neuroscience and biology at Baldwin Wallace University located in Cleveland, Ohio, and my PhD in Neuroscience at the University of Cincinnati in Cincinnati, Ohio.

My passion for neuroscience stems from my own personal journey. Early in life I was diagnosed with epilepsy and that inspired me to devote my professional life to studying the brain.

My dissertation research was focused on elucidating the mechanisms underlying the development of temporal lobe epilepsy.

And I’m also involved in the Society for Neuroscience, American Epilepsy Society and Cure Epilepsy as well. And finally, I’m a patient advocate. And I’ve dedicated my life to bring awareness to epilepsy and by talking about my experiences.

Christin Godale: 01:38

Epilepsy affects approximately 50 million people worldwide. So it’s one of the most common neurological disorders globally. Epilepsy is sometimes referred to as a seizure disorder, but it’s actually a diverse group of neurological disorders with varying types of severity that are characterized by recurrent seizures.

So basically, when a person has had two or more seizures within a 24-hour period which have not been provoked, that’s basically a form of epilepsy.

And a person can also be diagnosed with epilepsy if they have one or more unprovoked seizures with a future probability of having seizures as well.

Now the exact cause of epilepsy is kind of unknown. In general, epilepsy and seizures result from abnormal activities in the brain. It could be genetic, which means there's some type of mutation that's causing the epilepsy to occur.

Or epilepsy can also be acquired through events such as head trauma, infectious diseases, stroke, or, you know, even sometimes the development of a tumour.

Around 70% of people diagnosed with epilepsy can control their seizures with medicine or surgery. Over 30% of those patients actually will continue to have seizures, even though the best available treatments are indeed available. So these patients are unable to achieve seizure freedom in their life because they don't respond to these anti-seizure medications.

Christin Godale: 03:32

I was diagnosed with absence seizures in the mid 90s, when I was a very young girl, around one or two years old.

Eventually, I was diagnosed with additional types of seizures such as focal and tonic-clonic seizures, which made things a bit more difficult.

Now, for a general person, when they think of a seizure, they most likely will think of a tonic-clonic seizure.

And basically, what you’re thinking about is, you know, you’re watching a scary movie, and then someone starts having a seizure. It’s that kind of seizure.

So I do have those at times, and again, that made things a bit more difficult for me growing up. I recall trying at least five medications. None of them helped.

And my seizures continued to become worse and worse as I grew up. School was never easy for me.

Friends were also challenging at times, because I don’t know if again, if you have seen a seizure, but there’s a sense of lingering anxiety when someone witnesses you having one, it’s scary.

So it was difficult for me to retain friendships sometimes. When I was a teenager, my seizures were really bad. My mom had to bring down a bed from upstairs, set it up in our living room and lay me on it so she could tend to me during seizures, and it was really bad.

I was experiencing about 30 seizures a day at one point in my life. And that was very difficult, because the quality of life for me was not too great.

I was unable to eat alone, drink alone, even go to the restroom alone. So that was, it's hard at times to live with epilepsy in that sense, especially when it’s uncontrolled.

Christin Godale: 05:39

In 2012, I went into an episode of status epilepticus, which is basically when you go into a seizure episode, and it doesn’t stop, you don't return to normal consciousness.

And the more you have the seizures, you’re at risk for cell death in your brain, which again, isn’t something you exactly want long-term.

So if you keep having this status epilepticus episodes, it leads to the development of more difficulties that you will experience later in life.

So, after that, after my episode of status epilepticus in 2012, I had to be hospitalized for several months. However, during my time there, I actually had an incredible child neurologist.

He was amazing. And he noticed my interest in the brain. Because I always asked questions about what was going on, like, “Why do I need to take this medication? What are you doing to improve, you know, my treatment?” Or “What does this part of the brain do?”

I was asking so many questions all the time. So my neurologist actually brought me some of his neuroscience textbooks from medical school, so I could read them while I was in my hospital bed.

And he said, I should consider a career in neuroscience. And that moment really changed my life. And I decided to pursue that type of career because I wanted to understand what exactly was going on in my brain.

Christin Godale: 07:24

The most serious epileptic episode that I've experienced thus far in life was in 2017. And I was a second-year graduate student. The stress was real. I was working long hours in the lab. And, you know, I seriously believe stress is definitely a trigger for a lot of my seizures, but it’s definitely inevitable.

You can’t really avoid it when you’re in graduate school. But nonetheless, my most serious episode was I basically went into status epilepticus again, I've been in that type of event, I believe, four times in my life. Each time has been progressively worse.

In the case of the 2017 status epilepticus episode I was in in these seizure episodes for a long time. And thankfully, my significant other actually rescued me.

So I was going into this non-stop seizure episode. I was having those tonic-clonic seizures, back to back to back. And my significant other took me to the hospital, where he was informed that it was really bad.

And to my surprise, the doctors actually informed him and my family that there was a good chance I wasn’t going to recover. The physicians had to put me into this coma-like state to kind of calm down my brain activity, and possibly rescue me from the status epilepticus event.

I was in this coma for a couple of days. And when I woke up, I believe it was on the third day, I, you know, I couldn’t believe that I survived the events. It took me a long time to come back to a fully functional person and continue on in my graduate studies.

It was one of the most difficult seizure events I’ve experienced thus far in life. But after I woke up from that coma, I decided to become more vocal about having epilepsy and try to normalize what it's like to live with this type of neurological condition.

And when you do that, you begin to break stigmas associated with the disorder. And the more people know about epilepsy, the more people know about your personal experience with it. It helps break down this barrier and allows you to communicate what it’s like and eventually, for the next generation, maybe their experience with epilepsy won’t be as difficult, they won’t have to go through these social stigmas and be afraid to disclose they have epilepsy to their friends.

Christin Godale: 10:54

So my dissertation research is about understanding the mechanisms by how epilepsy develops in the brain, specifically temporal lobe epilepsy.

Now temporal lobe epilepsy is actually one of the most common forms of epilepsy. So this affects a lot of people, and is often sometimes considered a refractory epilepsy.

So some people with this temporal lobe epilepsy, they try all these different medications, but still cannot achieve seizure freedom. And some of them respond well to surgery, if they find a seizure foci, and are able to remove it, that’s great, and their seizures can be controlled.

However, if you’re not responding to anti-seizure medications, and your seizure foci is located in a part of the brain that’s really essential to your quality of life, or responsible to talking or hearing or smelling, you know, etc.

You don’t want to remove that part, because then you won’t be able to really enjoy or appreciate, you know, life.

So those types of patients are kind of out of luck, They can’t do surgery, they can’t, they’re not responding to anti-seizure medications, they may be able to do some type of device., device implantation, and that may be able to help them have more controlled seizures.

But again, in 30% of this patient population of epilepsy in general, they are unable to achieve that seizure freedom.

So ultimately, we need a way to find some type of opportunity to prevent the development of seizures before they even occur.

And I’m, I’m kind of talking about something like if you’re predisposed to developing epilepsy, like, say, that as a person with epilepsy, I’m privileged enough to have children, but they will have an increased risk of developing epilepsy since I have epilepsy.

Now, if I could give my future children some type of preventative treatment to just stop the development of epilepsy, and then they could grow up and, you know, not have to worry about it, that’s kind of where we’re going as a field.

And that would be a dream if we were able, ever able to accomplish something like that in our epilepsy research community.

But basically, my dissertation work is about exploring ways to prevent seizures with different types of cellular pathways.

So my research was essentially looking at something called the mechanistic target of rapamycin. And it's also known as mTOR. It controls a lot of key physiological functions in the brain like dendrite shape, size, structure, axon growth, etc.

And within mTOR research, in genetic epilepsies, this has actually been shown to be a key pathway when stopping specific genetic epilepsy developments such as TSC (Tuberous Sclerosis Complex).

These TSC kids, which have seizures, when they’re given specific mTOR related antagonists, their disease condition actually improves. So that’s great.

But with acquired epilepsies, which is a totally different mechanism. we're unsure if these mTOR antagonists will work with this type of epilepsy.

So basically, we’re kind of exploring whether or not this can work in acquired epilepsy. In temporal lobe epilepsy, we do see mTOR-related hyperactivation in the hippocampus every time a seizure occurs. So that’s quite interesting. And we thought maybe, if we can prevent this type of mTOR hyperactivation in different cell populations, then maybe that will lead to some kind of disease modification, and stop the development of the epilepsy.

Christin Godale: 15:41

Epilepsy sometimes influenced my studies in graduate school. For example, after a seizure event it’s quite difficult to tell whether (at least from my perspective), I’ll be fully functional the next day, or able to study for this specific test or even remember important concepts and definitions and theories that I need to move forward with my dissertation work.

I’ve developed some habits to combat these cognitive impairments that I experience, depending on how bad the seizures are for me that day, or that week, or that month,

I find myself writing down everything. Because even if I don’t, if I just listen to something, I won’t always remember everything. So I have to write down everything, just every possible thing that I’m learning in a lecture, or that I’m hearing in a meeting, or a discussion at a conference with a colleague, I’ll have my notepad out, and I’ll be writing away.

And, yes, sometimes it’s inconvenient, or it may look kind of strange. But that’s what I have to do to battle this aspect of epilepsy. And I'm okay with that. And I tell people about it.

So again, if another person with epilepsy also has the same experience, maybe it won’t look as strange.

And maybe this could be something normalized for our patient community in the future. Like it’s okay if you have to jot a bunch of stuff down so you can remember what you’re doing.

And yes, that’s, thatvs one thing I do to combat the cognitive impairments that come along as comorbidities of epilepsy.

Christin Godale: 17:54

The current state of epilepsy research is moving away from just preventing seizures from happening, and moving forward and focusing on the quality of life, as from a patient perspective, and combating comorbidities as well that are related to the disorder.

For example, right now, our research community is focused on understanding the causes of epilepsies and their association with neurologic, psychiatric and other somatic conditions.

So this basically involves taking some steps, and trying to discover new genes and molecular pathways that are related to different types of epilepsies, and figuring out how these things relate to changes in the circuits and network function, and interact with changes in molecular and cellular activity, going back and relating that to the pathogenesis of epilepsy.

So it’s kind of like understanding the disorder from a bunch of different perspectives, and then eventually marrying all of those together to have a more complete picture of what epilepsy looks like, in the 21st century.

Another key item that the epilepsy research community focuses on is preventing epilepsy and its progression, which is kind of the area that I focused on in my dissertation, since my dissertation was focusing or prioritizing that very thing.

Trying to research a way to prevent the development of epilepsy specifically, and acquired epilepsies, which again is unknown, but preventing epilepsy and its progression may include discovering types of biomarkers, helping identifying, anticipating and monitoring the status of epileptogenesis.

Epileptogenesis is basically how epilepsy forms in a long-term fashion. So if we could understand how epilepsy forms, then we can identify markers of illness progression.

And we could comprehend these epileptogenic changes that are happening from neural development, developmental origins as well.

An additional interest from the epilepsy community is finding new treatment opportunities and also improving current treatment opportunities to control seizures, and other epilepsy-related conditions with limited side effects.

And this includes identifying new anti-seizure therapeutic targets, and mechanism based treatments.

And this one is incredibly important because as a person with epilepsy, when you take these anti-seizure medications, you have a lot of side effects.

The ones I’m currently on sometimes lead to brain fog, where I’m unable to perfectly articulate what I’m trying to say to you, as a person.

They make you tired, sometimes you feel confused in random spurts as well, when you’re on these medications.

But this is, it’s a huge barrier to quality of life improvements for these patients with epilepsy. So, in my opinion, this is one of the most interesting ones to me.

And then finally, a recently-developed interest in our epilepsy community is limiting, treating, or preventing co-occurring conditions associated with epilepsy.

And this is also very important because a lot of epilepsies have comorbidities associated with them.

And those range on the spectrum ranging from neuro, neural- developmental issues, mental health, cognition, and other health related items affecting the quality of life as a patient.

So I want to specifically talk about the mental health aspect of epilepsy. And from my own experience, for example, I have you know, I’ve experienced anxiety, depression, and other barriers related to mental health as well.

And if you think about it, you know, you’re already having to deal with and manage epilepsy as your own obstacle in life, but then you’re adding on these additional mental health barriers as well.

So it’s kind of like you're managing all of these different things at one time, and you’re trying to prioritize maybe working on the epilepsy thing, or taking more medications for anxiety, yeah?

Christin Godale: 23:13

My career….I moved out of the lab and into advocacy work during COVID 19. Basically, my lab was shut down for several months, and I was unable to move forward with my laboratory research, I decided to become more involved in my professional organization called the Society for Neuroscience.

It’s one of the biggest organizations for neuroscientists worldwide. And they had a really fantastic program to encourage early career neuroscientists like myself, to participate in advocacy-related matters.

So eventually, I was accepted into the SFN early career policy ambassadors program. And I had the opportunity to meet with various members of our Congress and advocate for increases in federal funding from our government to support neuroscience-related research.

Through that experience, I learned that I very much enjoyed science communication, and I wondered if there was a career path where I could get involved with both the academic perspective and then the industry perspective as well.

Thankfully, during my graduate studies, I networked a lot. And briefly, I encourage any early career researcher listening to this podcast to prioritize networking while you’re in graduate school.

Yes, it takes a lot of time. However, it will help move your career forward. At the end of 2021, I was recommended to apply for a director level position, specializing in life aciences at CincyTech, and CincyTech is one of the most active seed funds in the Midwest here in America.

We are a public-private seed stage venture firm, whose mission is to be a trusted partner helping to transform ideas into high potential life science and digital companies here in southwest Ohio.

In January of this year, I secured my position at the firm as director of life sciences, where I’m responsible for sourcing, tracking and vetting life science deals for our funds, building relationships with entrepreneurs in both academic and industry settings, and supporting ongoing portfolio needs and performing diligence on new investment opportunities.

I work with an excellent team and I'm truly thankful to be at the firm. And thus far, CincyTech has made over $100 million in direct investments. And our portfolio companies have received more than $1.5 billion in co-investments. And right now we're raising a $100 million fund for our six seed stage funds. So it’s a pretty exciting time, and I'm really excited to be part of the mission of investing in the Midwest.

Jean Mary Zarate: 26:38

Now that’s it for this episode of Tales From the Synapse. I’m Jean Mary Zarate, a senior editor at Nature Neuroscience. The producer was Dom Byrne. Thanks again to Christin Godale. And thank you for listening.