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Playing a Significant Role in a Clinical Trial

Reinhard Rubow (left) and Miikka Terho.It was only a few days after what’s known as a “bionic retina” was implanted behind Miikka Terho’s left eye – the one that had completely lost vision 16 years previously – that he started to “see” again.

“When the chip was turned on, at the very first second, I was able to see something in front of me,” the 47-year-old recalled recently. “But of course it was not clear yet. I only saw flashes.”

A few days passed, and Miikka (pronounced MEE-kah) was able to identify horizontal, vertical and slanted lines on a computer screen. Soon, he was seeing the outlines of geometric shapes, then of real objects – knives, forks and plates on a table, for example.

“Something was there, where I was looking,” he says. “I had not had that kind of feeling for years – that I’m turning my eye on something, and there’s something right there. That was a good moment.”

It’s a moment, in fact, captured on a BBC video included in a post written by our chief research officer, Dr. Steve Rose, back in April. But the moment didn’t last. In 2008, for just three months, Miikka, who has retinitis pigmentosa, or RP, was among the first participants in a clinical trial for a device developed by the German company Retina Implant AG.

“It’s a sub-retinal chip, placed below the retina,” Reinhard Rubow, one of the company’s co-founders explained to me. “The light coming into the lens of the eye is collected in that chip, then converted into electrical impulses,” which travel to the brain via the optical nerve.

The chip, in other words, replaces the eye’s photoreceptors, which are damaged, often severely, by retinal disease.

But the company’s device – the latest generation of which is now in clinical trials – is still a work-in-progress. Miikka knew, going in, that the device wouldn’t be implanted permanently, so that, even if it did work, he’d be back to using a cane eventually.

“To be honest, I don’t really care if I will see anymore,” he told me during VISIONS 2012, FFB’s annual conference, in Minneapolis. He was there, with Reinhard, to take part in a panel discussion on clinical-trial participation. “But this chip,” he added, “it’s just interesting stuff. I just want to play my small part in the research.”

This may be a concept difficult to grasp. But it makes sense to many, like Miikka, who’ve learned to live, even thrive, with vision loss, while wanting to help future generations avoid similar tribulations.

A resident of southern Finland, he was 16 when his RP was diagnosed, after he’d complained of night vision problems. Roughly 10 years later, he’d almost completely lost sight in his left eye and had to stop driving. By the year 2000, his right eye had failed him.

In the meantime, Miikka founded and ran a sports-management company, which he sold just last year, after he’d helped 1,000 European kids get athletic scholarships to American colleges. Still a member of the company’s board, he adheres to a strict workout regimen, which includes riding a tandem bicycle.

He’s a few inches under six feet, while Reinhard is well over that mark, which made for something of an odd couple as they navigated VISIONS 2012. Although he couldn’t see me during our interview between sessions, Miikka said that, if the implant were still in, I’d be something of a “shimmery, kind of a ghost-looking, shape. But I would not have been able to identify if you were a man or woman, necessarily, and not your face. But if you lift your arms, yes, I’d be able to see them right away.”

It was these kinds of descriptions that later had attendees at his session rapt with attention. He also told them that, given the chance, he’d jump at participating in another clinical trial for Retina Implant AG. He did, however, repeat what he’d already told me.

“I became involved because I’m interested in the science,” he said. “If I can get the final chip, no big deal. But if I can be part of its development, that’s everything.”

Pictured above: Reinhard Rubow (left) and Miikka Terho.

2 Responses to 'Playing a Significant Role in a Clinical Trial'

  1. Nanacy Grams says:

    I am so interested in anything about RP because there are 7 boys in our family that is effected with RP. My father had RP and now the 7 grandsons.Hope this chip becomes available to everyone.

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