CVI - where do we go from here?

Transcript: 

Lotfi M Podcast

SPEAKER 1: Hello, and welcome to Perkins eLearning to Go. Each week, our hope is to provide you with an inside look at special education topics. In particular, visual impairment. Through a series of interviews with leaders in the field and a fresh look at our webcast series, we know you will learn something new when you are on the go. Now it's time to sit back, relax, and let's hear what this week's podcast is all about.

VALERIE : Welcome to Perkins eLearning to Go. This is Valerie. On today's podcast we will be discussing what is going on in the world of CVI. Dr. Lotfi Merabet joins us, and discusses his journey to becoming interested in CVI, successes he recognized with research in this area, and what is happening now and in the future for this visual impairment. We had a nice talk, and I hope you enjoy it.

Thank you, Lotfi, for joining that podcast today. I appreciate you taking the time. So I understand you're a researcher. Can you talk about the research you're doing?

LOTFI MERABET: Good morning, Valerie. Yes, so I actually wear a couple of hats. I'm an optometrist and I see patients that have visual impairments, both of ocular as well as brain-based causes, and I'm also a neuroscientist, as you mentioned as well. And I'm particularly interested in understanding how the brain adapts to visual impairment, again, both of ocular as well as brain-based causes. And I think the third thing that I'd mention is I also have a background public health, so I'm very, very interested in understanding how we can put science as well as medical research in general towards issues of health that need to be addressed. Things, for example, great example, CVI.

You know, try to focus resources, try to focus agendas to areas and populations, for example, that are under-served.

VALERIE : Wow! So you wear a lot of hats.

LOTFI MERABET: Yeah.

[LAUGHTER]

Definitely.

VALERIE : So how did you become interested in research, and in particularly this topic?

LOTFI MERABET: In terms of CVI specifically?

VALERIE : Yeah.

LOTFI MERABET: You know, it's interesting. So I started off working specifically in the area of ocular blindness and ocular visual impairments. You know, maybe worth mentioning as well, when I was an optometry student I did my internship here at Perkins, so I have ties to the school, and there was a big, big influence on me in terms of my career and what I wanted to do. And in particular, I was interested in how children of ocular blindness, how the brain adapted in that particular circumstance.

So for example, how do blind children learn Braille, how do blind children use sound to navigate the world when they're walking through the world, for example. So I was very, very interested in that arena, and spent a lot of time working with that. In particular, doing things like brain imaging as well as developing games for children as well, so I was very, very interested in that arena for a long time. And then as time went on, I would talk to colleagues, and I would present at various meetings like AER and so on.

Invariably, there would be always this question about CVI and so on, and really at the time, to be perfectly honest with you, I wasn't even aware of the condition. I wasn't even aware that this was something that was such a large population, that was still so much work that needed to be done, and that really was I guess an awakening moment. There are three people who I thank and I suppose blame at the same--

[LAUGHTER]

--for really raising my awareness in this. First is Amanda [INAUDIBLE] from San Francisco, Derek Wright, who was here for a very, very long time. The third person is Peg Palmer from Connecticut. These were close friends who were aware of my work, and I would see them at various meetings. And again, they would come up over and over again. You know, how about the specific condition of CVI? How is this different?

And that I think was really, really the beginning. I had to go back and do some homework, and of course talk to friends and colleagues. And I realized that this was a very, very large population, so going back to the public health issue. And then fundamentally the lab I think made a pivot three or four years ago towards that population, so now we really study both-- adolescents in particular with ocular-based visual impairments versus those with brain-based or neurological-based visual impairment, and we compare how the brain develops in those two scenarios, and ultimately how does that translate in the way that these children are habilitated, are educated, and so on, and are there differences.

So we work in a laboratory called the Laboratory for Visual and Neuroplasticity, and this is at the Mass Eye and Ear. In Boston. And again, as I mentioned, the lab is very, very interested in understanding how the brain adapts to visual impairment, and we've made again this pivot, this shift towards CVI or brain-based congenital causes of visual impairment. And we look at this from numerous directions, from numerous fronts.

The first is looking at it from a brain imaging standpoint. We're very, very interested in understanding how the brain activates. So as you know, a lot of the brain is responsible for visual processing, and there are parts of the brain that are specifically responsible for that task. So we're interested in understanding, well, in the case of ocular blindness, what do those visual areas do? In the case of CVI, where a person may have certain levels of residual function, what do those brain areas do as well?

So how does the brain activate in the case of CVI or visual impairment in general, so we're interested in that and trying to answer that question. How is that different in any way from neurotypical development? At the same time, we're interested in understanding the brain's wiring, the connectivity of the brain. How is it put together? Is it, again, fundamentally different than neurotypical development? And if so, in ways that we could predict, or in ways that would allow us to better understand the deficits that these children have, and how to again debilitate them and come up with strategies for learning and so on.

Then the second piece to it that I think is more recent but is also starting to get very, very exciting is this idea of virtual reality. So one thing that becomes very, very challenging is we think of a gap, so let's say a child with CVI goes to see their eye doctor, and maybe they read the letters on the chart and things like that. And then the doctor's at a loss and saying, well, I understand how they can read the chart and give you glasses. But now the child is talking about all of these difficulties in the real world.

You know, I can't find my favorite toy, I can't find my parents or my brother or sister in a crowd. And so and then again that's not captured. Those challenges are not captured in a standard eye exam, and I think that gap is really something that we need to close. So one direction that we started heading in a few years ago is virtual reality, where the ideas that we can create simulations, we can create these controlled environments where individuals can look into a world like a crowd and find a particular person. And we can change parameters, we can change the number of people in the crowd, how fast they move, what are they wearing.

Oh, for example, in younger populations we can say, oh, here is a toy, and then put that in a virtual toy box, and see as we add various-- you know, so we change the complexity of the visual environment. In a controlled fashion, how does that change the child's perspective or the child's perception? And I think that allows you to have the control that you want from a scientific standpoint to understand what exactly is happening, but at the same time is much more ecologically valid, and much more representative of what that child is going through.

So that is a new direction that we're heading in and I think is starting to get quite productive, and then you take that virtual reality and you combine that with the brain imaging. So again, how does the brain activate, how does the brain connect when it's doing these tasks? And my hope is that that's going to be more informative in helping us understand what these kids are going through.

VALERIE : And once you understand, you can help more.

LOTFI MERABET: Yeah.

VALERIE : You know, it's like a silver bullet that you can--

LOTFI MERABET: That's right. That's the hope. Yeah, the hope is that it's a cycle, that the more you study it, the more things you can come up with, the more strategies you can put into play. An example where I think this virtual reality strategy and research can be helpful is we have one virtual reality task that's called the virtual hallway, where children are looking at the hallway of a fictitious school and kids are walking back and forth. And their task is to locate the principal of the school that they already previously identified.

So as the principal is moving around in the corridor, we change the number of people who are in there. And what we find is the more kids that are in the room, or in the hallway I should say, and the faster that they're walking and so on, the harder it is to identify them, right? But another thing we notice is that we can change things. We can remove, for example, the clutter in the hallway, we can make, for example, the principal wear different clothes, and we find that that changes the child's performance on how well they can identify them.

So one particular story. You know, we were testing this sort of thing, and this one young gentleman that we were working with, and we were showing his family that if, for example, the principal is wearing bright color clothes, the child can spot the principal very, very quickly. So in other words, bright colors is a cue that that child can use to help identify the target in question. Then a few months later, I get this text from the mother.

They were heading out to a large amusement park in New England, and then she sent me this picture of her son and the family, and they all were wearing bright-colored clothes.

VALERIE : Oh, nice!

LOTFI MERABET: And she said for the child it was such a great experience because it just lowered his anxiety. He was able to spot his family at any given time. You know, if he was looking around and searches, you know, look back, he could find his parents, he could find his siblings, and so on. So I think it just goes to show you that sometimes a simple strategy can make a big, big difference, but we have to figure out what the strategies are in a structured and controlled fashion, and I think that's where we're heading now.

So it just gives you an example of how simple things can be tested in a way that could ultimately have benefits.

VALERIE : Virtual reality, that's amazing! You don't have to-- it makes it so much easier. You can really create any sort of scenario.

LOTFI MERABET: Yeah, I mean, I remember when I started when I was a grad student. You know, virtual reality was still very much in the early stages, and I think you think of these blocky type images and so on. Well, it wasn't very real. [LAUGHS]

VALERIE : Right.

LOTFI MERABET: That was part of the problem. The other thing was that it was so computationally complex. You needed basically a roomful of computers to run these sort of real world sort of scenarios. Today, a lot of off-the-shelf equipment-- you run it off a laptop, for example. I mean, I would even tell you that some of the movies you're watching are done in virtual reality and you're not even aware. I mean, they're so lifelike now. I mean, it's really quite striking.

So it's an interesting tool not just in the case of CVI and visual impairment, but it's being used in other arenas like PTSD and various phobias, where it's a safe, controlled environment. And you can test, again, in a controlled fashion and say, well, if I change this parameter, or if I do this, or if I cut this, or if I do that, how does that play out? So a great example also is like a flight simulator. You know, if a pilot wants to learn how to fly or how to land a plane, much better to do it in a simulator using virtual reality than actually flying the plane for real.

VALERIE : Exactly. Less crashing.

LOTFI MERABET: Exactly, exactly. So if you're going to make mistakes, much better to do it in a controlled safe environment obviously so you can test things. You can try different scenarios, learn from that, and then take those skills to the real world and translate them.

VALERIE : Nice!

LOTFI MERABET: Yeah, that's really the idea.

VALERIE : So you've really gotten into this kind of on the ground floor when there wasn't a lot of awareness.

LOTFI MERABET: Yeah, I wouldn't say I was in the early stages, but certainly I think I came in at a time where the awareness was certainly rising, and I think this is also related to one of the challenges with CVI-- that there's just so much-- I mean, this is a very, very complex situation. As you know, I think there's a lot that still needs to be learned, and I also think we're at a phase where a lot of people were working on their own, you know, have a lot of experience working with populations.

And now because of the world that we're in and we're sharing this information, we're kind of bringing all this information together. And I think we're trying to kind of sift with what still needs to be done, what do we know, what needs to be verified, what new direction, for example, that we need to head into. So I think we're in this transition phase now where we're collecting information and figuring out the next steps. It's an exciting time, obviously, but at the same time it's a phase that takes a lot of digging, a lot of thinking and reflection for sure.

VALERIE : It sounds like there's a lot of good minds in the pot.

LOTFI MERABET: I think so, and, again, I think that's quite exciting. I think it's definitely worth mentioning how Perkins has played a really, really important role in that as well. I really have to give a shout out to Superintendent Bosso for really leading this. You know, the best way I can say it is that we're not talking anymore. We're actually doing things, you know?

VALERIE : That's good.

LOTFI MERABET: Exactly. I think that's really, really exciting. So with his leadership, and he's put together I think some great people who are coming together, who are having regular discussions, initiatives like the collab that we had a couple of years ago, bringing in experts, bringing in people from different perspectives, whether it's the scientific side, the education side, parent advocacy, medical research, and so on. And really creating this backyard, if you will, where Perkins allows these individuals to come and meet, come together, share ideas and, like I said, think of next steps, so it's quite exciting to witness that and be a part of that.

VALERIE : It's similar to the symposium, where we had the different groups in there.

LOTFI MERABET: Yeah.

VALERIE : And you get a better feel for what really needs to be done, especially when you talk to a parent.

LOTFI MERABET: Yeah.

VALERIE : Because you're going to come at this in a completely different direction.

LOTFI MERABET: Absolutely, yeah. I'm sorry. You were going to add something, yeah?

VALERIE : No, I was done.

LOTFI MERABET: Yeah, I completely agree, and I think another great aspect is we've gotten past just this simple idea of let's come together, let's give some presentations, and what next? Well, now we're having symposia and meetings to discuss what's next, and I think that is what's fundamentally different, and I think that's what makes this exciting is that we're tasked now to bringing together the right people to come up with these ideas and agendas and saying, look, these are actionable items that need to be addressed so that the field can move forward.

I think that's what's new, and I think that's really quite exciting.

VALERIE : So it's still relatively that the combining of the minds is new.

LOTFI MERABET: Mhm.

VALERIE : But what successes have you seen to date within the realm of CVI?

LOTFI MERABET: I think the biggest issue is the fact that we're getting all these minds in the same room. That was something that I think wasn't possible in the past, and, again, I still consider myself a newcomer to the arena. But I think it was difficult to get people with diverse opinions to come together. I think there were factions that were starting to get built, like I'll have a meeting with two or three people that think the same way I do, and then other people would do the same thing.

VALERIE : Yeah.

LOTFI MERABET: And I think that that just entrenched ideas rather than trying to have that conversation. I think that's what's fundamentally different with the effort that's coming now. It's that I think we're more respectful now of other people's opinions and the work that people have done, and we're sort of forcing the conversation in a way that's professional, where you're accountable for your ideas. And I think the fact, as you mentioned, you're bringing in different perspectives.

You say, well, you may feel strongly about a certain thing, but how do you explain that to a parent, how do you explain that to a fellow clinician, or how do you explain that to a fellow educator in a way that we're all on the same page? And I think we're slowly distilling ideas to a common denominator, and I think that's what was missing in the past, so I think that's, again, another exciting direction.

VALERIE : A good, healthy debate of ideas.

LOTFI MERABET: Yeah, I think that's--

VALERIE : Productive.

LOTFI MERABET: I think that's what the field needs, to be perfectly honest with you, and what hasn't happened in the past. So I think that's certainly an important piece and, again, I really have to acknowledge Perkins for taking that on and recognizing that, A, that needed to be done, B, how to do it, and then, 3, creating the environment for that to happen.

VALERIE : What are you hoping for for the future?

LOTFI MERABET: I really see it on lots of things, first of all.

[LAUGHTER]

But really I would say on three levels. I would say in short-term I really would like to see more advocacy and visibility in terms of CVI. I think just from my perspective from the clinical research standpoint, I would love that the NIH, National Institutes of Health, and National Eye Institute recognize CVI as a condition that they should be putting more effort, more emphasis in the same way that-- you know, the NEI is focused on glaucoma or various eye disease and infections. CVI should also be a strong direction of research as well.

In that effort there was a recent call where the National Eye Institute in relation to their 50th anniversary had a call a request for information in terms of what does the NEI need to do moving forward. And a couple of weeks ago, again, through the coordination of a Perkins initiative, we were able to get a large email blast to fellow clinicians, investigators, parents, educators, and so on to respond to that with one voice saying that CVI should be a direction that the NEI be interested in. And I think that was an important step an example of something tractable, and an actionable item that we can act on.

So I would say that would be a short-term thing. Mid-range, again, galvanizing Perkin's role as a mediator, as a backyard for people to come together for ideas, a place to experiment, you know, novel collaborations that maybe haven't happened in the past, a safe place where people can come with ideas and express that. I think, again, Perkins plays a key role in that, and I hope that that continues, and I would say in the long-term certainly, again, from my perspective as a clinician scientist, I hope a lot more scientists get involved in CVI.

You know, the field of blindness has largely been dominated by ocular causes, which of course we've learned a lot, and it's been very, very important. But I think there's a lot of smart people out there that if they made that same pivot towards this population, we would make a lot of advancements as well, people who have great backgrounds and various techniques, again, like brain imaging and so on. We know more people involved is going to create greater-- you know, it's going to be a cycle. More visibility, more interest, more knowledge, more information, more answers, and the dialogue will continue and continue.

And I think right now we haven't quite come full circle yet, where this becomes more of a big sort of spiral sort of thing. So I think those are the three pieces that I would say.

VALERIE : Well, thank you very much for coming in. I appreciate it. I have high hopes for the future of CVI.

LOTFI MERABET: I do too. [LAUGHS]

VALERIE : It certainly sounds like you're headed that way.

LOTFI MERABET: I hope so. Thank you, Valerie.

VALERIE : Thank you. I hope you've enjoyed today's podcast. If you're interested in hearing more from Dr. Merabet, you can watch his webinar, Comparing Plastic Changes in Ocular Versus Cerebral Causes of Visual Impairment on perkinselearning.org. Or if you're in the Watertown, Mass. area, Perkins Training Center is honored to host Dr. Merabet for a one-day workshop titled Vision in the Brain 2020 on March 14th. Both of these offerings can be found on our website www.perkinselearning.org.

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