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Blind Equinox marathoner hopes to shine light on rare genetic disorder

  • Author: Laurel Andrews
  • Updated: September 28, 2016
  • Published September 17, 2015

Fairbanks' Equinox Marathon is widely regarded as one of the most difficult marathons in the nation. Runners endure an 1,800-foot ascent up Ester Dome, racing through wooded trails laced with tree roots and ruts and over gravel roads before braving a steep descent -- sometimes in the snow.

Think that's hard enough? Now imagine running it blind.

Brian Switzer will do exactly that on Saturday, when he runs the trail's 26.2 miles in support of the Usher Syndrome Coalition's campaign to "Own the Equinox" and raise awareness of the condition.

It will be Switzer's first marathon. He's flying from his home in Massachusetts to Interior Alaska for the race.

Fairbanks became a centerpiece of the coalition's campaign thanks to resident Caroline Brown, a long-distance runner whose 5-year-old son, Galen, was diagnosed with the most severe type of Usher syndrome when he was 18 months old. He's the only child in Fairbanks she knows of who has it.

If you've never heard of Usher syndrome, you're not alone. The rare genetic disorder causes combined deafness and blindness and affects about 400,000 people worldwide. There is no cure.

"I want to show the next generation of children with Usher syndrome, as well as their parents, that we are capable of doing many things, including running a marathon," Switzer wrote in an email when asked why he decided to run the race. "Life is too short to give up doing the things we love."

Switzer, 25, was diagnosed with Usher syndrome when he was 4 years old.

There are three different clinical types that distinguish the severity of the disorder. Type I, the most severe, also affects the inner ear, causing balance issues.

"The easiest way to describe it is that we are born deaf and that we slowly lose vision over time. We lose our peripheral vision first and then eventually lose our central vision and become blind," Switzer wrote.

Switzer was diagnosed with type II, meaning he had hearing loss from birth and progressive vision loss. Now he is blind and partially deaf, and uses a hearing aid. Active in the deaf community, Switzer knows both tactile sign language and American Sign Language.

The last of his vision faded a year ago.

"I fell into a depression, and I felt like I could literally do nothing," Switzer wrote. "I couldn't work, read, write, or even enjoy a simple TV show. One of the things that helped me bounce back was learning how to run again."

Switzer will run the marathon with guide Marco Steffan, who has traveled to Fairbanks from Germany.

Leading a blind runner through the course is a "monstrous task," Switzer wrote. The two will be tethered together with an elastic band. Steffan will also be talking to Switzer throughout the race, warning him of obstacles and telling him which way to turn.

"Our sighted guides are unsung heroes," Switzer wrote. "They run and train with us just so that we can compete with everyone else."

Running has allowed Switzer to regain a sense of dignity, he said, giving him the confidence to go on to graduate school. He already has dual undergraduate degrees in economics and philosophy and a minor in German from Stonehill College in Easton, Massachusetts, where he lives.

'Own The Equinox'

Switzer's efforts in Fairbanks are one part of an international push by the Usher Syndrome Coalition to "Own the Equinox."

The equinox is the "perfect analogy" for the disorder, said coalition founder Mark Dunning from Massachusetts Tuesday.

"We're at this point where there's a lot of opportunity to find treatments for Usher syndrome; to push off the darkness people have been facing most of their lives," Dunning said.

Dunning started the coalition after his daughter was diagnosed with Usher syndrome nine years ago.

"We were told that we would probably never meet anybody (else) with Usher syndrome. So, obviously, that's a pretty lonely place to be," Dunning said of his reasons for starting the coalition.

Fast forward to 2015 and the community is comprised of hundreds of families from 43 countries, Dunning said. Those within the community refer to it as a family; people from across the world have formed inseparable bonds based around a shared experience.

That support is paramount when a family is confronted with such a terrifying diagnosis, Dunning said. When a doctor diagnoses a person with the disorder, "a lot of people are either too afraid to pursue the diagnosis or have already given up," Dunning said.

Not only can that isolation cause extreme stress, it also hinders potential research. Treatments are being developed that are ready for clinical testing, Dunning said, but that means doctors must have access to a sizeable population of patients with Usher syndrome.

Fairbanks resident Brown called the disorder "pretty vicious."

"The two disabilities (blindness and deafness) compound the effects of each other," Brown said.

The coalition's community helped pick her up emotionally after learning of the diagnosis, she said.

Dunning will also be heading to Fairbanks this weekend with his daughter, who is now 16, in part so she can see Alaska before her vision disappears. "We're going to try to see everything we can. She wants to see wildlife -- that's her big thing," Dunning said.

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