A New Frontier

That’s one small step for man, one giant leap for vision.

In early February, 2022, a team of researchers successfully implanted a first-of-its-kind artificial vision system into the brain of a blind volunteer. The Intracortical Visual Prosthesis (ICVP) bypasses the retina and optic nerves and connects directly with the visual cortex, creating the potential for those without vision to gain a perception of the world around them.

The surgery is an exciting new step in the frontier of vision research. And it came together after decades of work and years of collaboration by some of the world’s leading experts in their fields.

The multidisciplinary, multi-institution team is made up of bioengineers, surgeons, psychologists, vision specialists…and Lions.

The Technology

The brain works as a powerful processing system and receives millions of nerve signals from the eyes, but if the eyes are no longer able to communicate with the brain, researchers have found they may be able to intervene by bypassing the eye and optic nerve and going directly to an area of the brain called the visual cortex.

The team that developed the ICVP system was led by Philip R. Troyk, executive director of the Pritzker Institute of Biomedical Science and Engineering at Illinois Institute of Technology (IIT), and professor of biomedical engineering at IIT. The surgery represents the culmination of nearly three decades of research dedicated to working to provide artificial sight to those with blindness due to eye disease or trauma.

Since many individuals affected by total blindness do not have intact retina or optic nerves but retain the visual cortex—the area of the brain that allows people to see—an intracortical visual prosthesis may be the only possible advanced visual sensory aid from which they can benefit. The ICVP uses a group of fully implanted miniaturized wireless stimulators to create artificial vision.

While there is currently no cure for blindness, the ICVP offers a promising first step in helping those with complete vision loss begin to see. Or, really, to perceive.

“While there are many different kinds of sensory substitution devices, it’s not the same as vision,” says Troyk. “There are other tangible benefits to vision and to your brain processing vision. It’s not about the E on the eye chart. There’s a strong longing for that visual input.”

The Bioengineer

Dr. Philip Troyk didn’t set out to change the lives of people living with blindness. In fact, he didn’t really intend to change anyone’s life. He was just interested in circuits. As an undergraduate studying electrical engineering at the University of Illinois in Urbana-Champaign, Troyk made a connection between the electrical circuits he was studying and the electrical signals in the human body. “I got fascinated with the idea that there are also electrical signals in the body. And I wondered if those could be mated.”

At the time there were no programs at the University of Illinois that put those two fields together, but when a professor caught wind of his interests he told Troyk, “Well if you’re interested in that, we’ve been working on a curriculum for a new field of instruction called bioengineering.” And he handed Troyk the list of classes to take.

“While my friends were taking flower arranging as their electives, I was taking physiology,” Troyk says. But after a short stint in industry, by the time Troyk reached graduate school at the University of Illinois at Chicago, there was an established bioengineering program. He then realized that in order to work in cutting edge research investigating the ideas that most excited him, he had to get a Ph.D. “Not because I thought it would make me so much smarter, but because it was the way to get to do what I wanted to do.”

And what he wanted to do was integrate electronics with the human body to help people.

Astronaut Readiness Force

What Troyk developed in collaboration with his colleagues represents an exciting new step in giving those without vision the chance to “see.” And when the time came to do a clinical trial, the ICVP team knew they wanted to do a special kind of study. And not just special because of the device they were testing, which was unlike anything done before, but they wanted the actual process to be different.

They knew they were asking people to put their own health and safety at risk to add knowledge to the field—knowledge that the participants themselves likely wouldn’t gain much from. The technology was still in its beginning stages, and the first participants would undergo many hours of testing which would help the researchers understand how the device was working. This initial testing would provide crucial information that the team could use to further refine the technology. They wanted the participants to really feel like they were an integral part of the research team–because they were.

“They’re very much like explorers,” says Troyk. “We genuinely view it that way. Just the vocabulary sets the tone for how we would like our study to be and to be remembered.”

Troyk has learned a lot during his career in biomedical research, and perhaps the most important thing he’s learned is that you have to speak to the people who would be using your product or device. “The participant can tell you things you’ve never thought of,” he says. He recalls an encounter he had some years ago when discussing a prototype for the ICVP with a man at the Chicago Lighthouse. The man, who was blind, asked what the device would look like outside his head. Unsure at the time what it would ultimately look like, Troyk said, “You can always wear a hat over it.”

“I don’t wear hats,” the man said.

The conversation made a lasting impression on Troyk. Often, engineers can get caught up in the workings of their devices and forget to consider the humanity of those they are creating the devices for. “Why should we think that people who are blind don’t care about how they look,” Troyk says now. “Everyone cares about how they look.”

And it’s through that lens that Troyk approaches all the work he does.

The entire ICVP team considers the participants in their study to be a vital part of the process. And Troyk uses language to make that clear. “We call them the Astronaut Readiness Force,” he says.

The Participant

Brian, a Lion from Indiana, has never been one to toot his own horn. While he isn’t the type to seek attention, his good humor and easy demeanor make it hard not to like him. Growing up in his small town in Indiana, Brian had plenty of friends, but it wasn’t until after high school that he met the love of his life.

Tracy grew up just down the street from him, but the two went to separate high schools and had never met. It wasn’t until he started showing up at the neighborhood pizza shop where she worked—and still does today—that he was able to win her over.

“It was my charming personality,” he says, jokingly, as to how they fell in love. Tracy, who has a quiet, understated sense of humor and quick wit laughs at this. “I liked his self-confidence,” she says. “He seemed to know what he wanted, and he came up with a plan to achieve it. He still does that. He’s good at thinking through how to solve a problem and then implement it.”

It was those problem-solving skills that came in handy when, nearly 30 years into their marriage, Brian’s life got a little darker.

The Detachments

Brian has a genetic condition that makes him more susceptible to detached retinas, and at 17, between his junior and senior year of high school, his retina detached in his left eye. He lost sight in that eye, but it didn’t seem to slow him down. At 21, he was playing basketball with some friends and took a basketball to the face, which detached the retina in his right eye. Thankfully, surgery was able to reattach it, and he went about his life as an avid cyclist, scuba diver, and musical instrument manufacturer.

Then, his luck changed.

“May 21, 2016, was the day I went blind,” he says. “I can tell you the exact day. I went to work at five in the morning and began to notice something was wrong. By 10 am that morning I was legally blind. I currently have no vision whatsoever.”

What brought Brian to this place is a long road.

It began with a “floaty” in the corner of his eye on the day of his son’s graduation from college. He waited to mention it to his family, not wanting to ruin the day. By the time they returned home his optometrist took one look and sent him directly to an eye surgeon who lasered it and sent him back to work that same day. Brian assumed all would go on as normal. He assumed it would be like it was 30 years ago when a simple surgery fixed the problem.

But less than two weeks later his retina came loose again. His surgeon did another reattachment, using the scleral buckle method, but a few days later it became detached again. Turns out there was a microscopic pinhole in the retina that enabled fluid to get behind his eye. The surgeon in South Bend didn’t have the equipment to see the pinhole, so he sent Brian to Michigan. What followed was a two-year ordeal in which Brian endured multiple surgeries and painful procedures, all in the hopes he would eventually regain his vision.

He never did.

The Training

After each surgery came a lengthy recovery period during which time Brian was legally blind. Each time they prayed that Brian would heal. While Brian was waiting to recover after a successful surgery at the University of Michigan, he developed an infection in his cornea. It was Labor Day weekend, 2016. That was when Tracy and Brian realized it was time to start planning for a scenario in which Brian would not regain his vision.

First and foremost, he needed to get some skills to learn how to navigate daily living as a person without sight. Tracy spent hours searching for programs. There was a woman who helped folks in northern Indiana, but she was overbooked and could only help Brian about two hours per month. While he learned some useful things with her, it wasn’t enough.

In the summer of 2017 Brian’s uncle, Lion Edward Ressler of the Marietta East Cobb Lions in Georgia, came to visit. When he asked Brian what kind of training he’d done, Brian told him it had been hard to come by. Ressler had some knowledge of what was available from being a Lion and worked his connections. By September Brian was attending training with the Vision Rehab Services of Georgia. Through a personal donation by Ressler, Brian was able to get about 12 days of training—what would have taken him nearly five months to get through with the other services. Tracy and Brian were grateful for the opportunity, but what he realized after that week and a half was just how much more education he needed.

They made the decision that Brian should attend the Colorado Center for the Blind—one of the three training centers sponsored by the National Federation of the Blind (NFB).

The Littleton facility offers students a six-to-nine-month program that immerses them in the experiences needed to feel confident handling independent living as a person without sight. Training includes cane travel, braille, home management, technology, woodshop, home maintenance, and navigating a city using public transportation. Students who have some residual vision, as Brian did at the time, are required to use sleep shades during their coursework so that they can learn how to navigate the world even if their vision eventually deteriorates. Brian did very well.

“He was determined. Very determined—more than I’ve seen anybody—to do this for himself,” says Vicki Hedrick, the former residential manager at the Colorado Center for the Blind.

She got to know Brian very well during his seven-month stay and remembers having an instant connection with him on his first day. “It was like a brother-sister bond right away,” she says.

Hedrick watched as Brian navigated the coursework brilliantly, showing the confidence and problem-solving skills that his wife had noticed so long ago.

But returning home after his coursework was complete was bittersweet. While he was in Colorado, his vision deteriorated. By April of 2018, during a visit with his doctor in Indiana, it was confirmed that his vision was gone for good. “My optic nerve crapped out on me,” he says.

In the four years since, Brian has moved on, getting accustomed to a life without sight. He is still an avid cyclist, as he was before he went blind, but now he puts in his miles on a specially fitted recumbent tandem bicycle with Tracy at the helm. He cooks and does chores around the house. He still works at the same small musical instrument manufacturer he’s worked at for decades, though now in a different capacity. Before he lost his vision he was running the press room and stamping operation. “I loved my job,” he says. He enjoyed making the parts for the flutes and piccolos and then passing them on to the next person to be polished and turned into a musical instrument. “It was just a neat dynamic,” he says. “I was part of the evolution of a musical instrument. It makes what you do more than just a J. O. B.”

Now he works in customer service. While he doesn’t get the hands-on satisfaction of making an instrument, he does get to stay involved with music.

“The interesting thing about music is that it crosses cultural borders, crosses language borders,” he says. “You can take two people who don’t speak the same language, but they can play together in a duet. They can play along with each other and never speak a word. Their common language is music.”

A Lion is Born

When Brian and Tracy were first looking for help navigating the world after he lost his sight, the Lions in his home town weren’t sure how to help. They wanted to, but only knew about the eyeglass and Leader Dog programs. Brian was a long way away from qualifying for a Leader Dog. Eventually, Brian realized he could help. “I knew I wanted to get involved somewhere and thought the Lions were a good place to start.”

He figured, what better way to get information out there than to become a resource with and through his local Lions. “Now, if somebody who is blind or visually impaired comes to our club, they could put them in touch with [Tracy and I] and we could offer our knowledge and support with the help of my club.”

It turned out to be a good match. Brian has just the right personality for it. Not only has he found kindred spirits in the jokesters that make up his club, but he’s he an active recruiter. He insists on wearing Lions gear to all his research appointments. “I could get fined if I don’t,” he says, referring to the way his club raises money for

administrative costs by slapping each other with fines for anything from going on vacation to having a grandchild. While many members of the research team are Lions, Brian works on the ones who aren’t. “So, are you a Lion yet?” he’ll ask casually between tests.

Most importantly, Brian inspires his club—the Baugo Lions—to do more and to show up whenever they can. In his fifties, he’s one of the younger members, and knows they need to be actively recruiting younger people into Lions.

“Remember those really cool old guys who paid for marching band and helped us out in little league when we were kids?” he tells them. “We’re those cool old guys now. People my age and younger need to be reminded, Lions were there for us and we need to be there for the people in our community, too.”

Some might say Brian is showing up for more than just his own community. By volunteering for the ICVP research project Brian is showing up for all people without sight.

“I’m not doing this for me,” he says. “I know I won’t have my vision restored, that’s not what this is about. But hopefully, this will be the beginning, and one day, maybe someone else could have that.”

While there are still years of testing and refining to be done,  for now, you might say the Eagle has landed.

Funded by Lions

For the ICVP project, Illinois Tech is collaborating with Rush University Medical Center, The Chicago Lighthouse; the Wilmer Eye Institute at Johns Hopkins; the University of Texas at Dallas; Microprobes for Life Science; Sigenics, Inc.; and The University of Chicago on the initiative, with Troyk serving as the principal investigator.

Many of the institutions and the work involved in this research have been funded by donations from Lions, including the Wilmer Eye Institute and The Chicago Lighthouse. Many of the individual researchers are also currently Lions, with more “converts” on the way.

For more information on the ICVP research visit chicagolighthouse.org/icvp.