A year ago, Jeff Benelli was cutting his son’s peanut butter and jelly sandwich and couldn’t see both edges of the crust. Today, he cuts his grass and can’t see the width of his lawn mower. And within a few years—if possible cures don’t reach clinical trials—Jeff’s vision could be cut off completely.

This devastating prognosis and daily struggle, however, does not slow him down.  Despite a two-degree visual field (most people have close to 180-degrees of vision), the 44-year-old husband and father of two said he’s training harder than ever for the 2010 Waddell & Reed Kansas City Marathon. It will be his sixth marathon.

“I downloaded a program off the Internet,” he said. “It’s a six-day-a-week program; I run five days a week on the treadmill.”

For years, Jeff trained exclusively outside on the open road until the risk of injury became too high. “I ran into a stop sign once and ran over a couple ‘for sale’ signs,” Jeff said. “It just became too dangerous.”

He said it’s not much for scenery, but his treadmill gets the job done. He pushes himself hard every morning in an effort to improve his time.

At the Waddell & Reed Kansas City marathon in 2008, Jeff ran 3:15:24. In Chicago the next year, he finished in 3:10:21.

This year’s goal? “I want that 3…I want that 3 so bad,” he said. “If I can start hovering around that 3-hour mark, I could maybe get some real attention.”

Jeff believes a decrease in time would translate to an increase in awareness of Choroideremia, the degenerative disease that is slowly taking his eyesight. Choroideremia is an extremely rare, inherited disease that attacks the choroid and retina in the eye. While females carry the disease, Jeff explained vision loss is experienced almost exclusively by males.

Choroideremia is so rare, in fact, that when he was diagnosed on Oct. 13, 1994, Jeff’s doctor informed him not enough people have the disease to warrant research and attention. He said there’s no public outcry or funding.

“You’re just going to have to accept the fact that you’re going to be blind,” the doctor told Jeff.

But Jeff wasn’t ready to accept it.

“On a list of diseases that can be cured, it’s very high. It’s a very curable disease,” Jeff said. “They’re very confident they have what they need to fix it—they just need the money.”

So Jeff runs. To raise funds, increase awareness and inspire. He estimates his fundraising efforts to date have contributed more than $80,000 toward the cause. He said more than $820,000 still must be raised within the next 12-18 months for Dr. Jean Bennett, of the University of Pennsylvania School of Medicine, to take possible cures to Phase I clinical trials.

While a cure would not reverse the effects of Choroideremia on Jeff’s vision, it would halt the disease’s progression. He said his motivation for finding a cure is two-fold. First, he wants enough vision to be able to continue to read. “I don’t want to be 65 years old and not be able to read a book.” And secondly, he wants a cure for his 11-year-old nephew who was recently diagnosed with the disease as well. “He doesn’t have to lose any vision," Jeff said. “He doesn’t have to suffer at all.”

On race day, look for Jeff—he’ll be wearing a T-shirt indicating he’s legally blind. He said if he hits the 3-hour mark in Kansas City, he would consider joining the U.S. Association of Blind Athletes at the USABA National Marathon Championships in California this December.

“I want the world to realize my efforts in an attempt to inspire others to deem this cause worthy of supporting,” Jeff writes on his website. 

So he runs. And while Choroideremia slowly takes away Jeff’s eyesight, his vision is stronger than ever.