DIAGNOSED with a rare disease that robs him of his sight, Scott didn't let that stop him from running 12 marathons this year.

Most of us can't imagine running a marathon. So picture completing the 26.2-mile trek blindfolded.

Incredibly, that's exactly what Miracle Mile resident EJ Scott did in Chicago in 2010 and last month in Arizona. And he plans to do it again this year, not one, but 11 times.

The 36-year-old improv actor explains that the blindfold he will run in is, in part, a metaphor for choroideremia, the rare, inherited disease that has already robbed him of 85 percent of his vision rendering him legally blind.

Scott was 28 when he was diagnosed. The news came after his younger brother, who was 16 at the time, suffered a black eye playing baseball. A doctor noted symptoms of retinitis pigmentosa, and since the disease is hereditary, he suggested that EJ's eyes also be checked out by a specialist.

The brothers learned they had choroideremia, a disease found almost exclusively in males that had left his maternal grandfather completely blind in his 40s. Females are carriers; Scott's sister's son, now seven, was diagnosed as a baby, and her second son might also be affected.

Running the marathons, said Scott, "is a way to raise money for the foundation that is looking for a treatment and cure for the disease. And it's helpful for me to feel like I'm doing something positive for something negative."

He started out by putting together comedy shows. "I'd just ask comedians, actors, musicians to do shows, and we'd invite people and raise money that way."

Later, an overweight Scott solicited pledges for each of the eventually 70 pounds he went on to lose - an effort that raised more than $14,000 for the Choroideremia Research Foundation.

"From there it went to running. I had been a very heavy guy, and I just wanted to keep the weight off," he said.

The disease, which causes a loss of peripheral vision and progresses to a loss of central vision, is made worse by sunlight, which is another reason for the blindfold. "And it also sops up the sweat real good," he said with a laugh.

Scott runs with a guide. "I really have to trust my guide. There's a lot of movement and activity around me when I'm running, but I can't see it. I feel sort of helpless and I have no control."

Despite having the guts it takes to run a marathon with his eyes covered, and his upbeat attitude, Scott admits that "it’s been tough. And the hardest thing is that it affects my whole family.

"There’s just hope. That's all we have right now," he added.

Recent news from researchers has given Scott and others like him more hope than ever. Scientists discovered mutations on a gene on the X chromosome that causes the disease. New research on these findings drives the search for a treatment. And investigators are developing a gene therapy for evaluation in animal studies that will move the treatment into clinical studies.

"It's exciting, and there's a lot of hope," said Scott. "But it's a small disease and not a lot of people know about it. We need money big time."

For now, Scott, who just completed the Rock 'n' Roll Marathon in Arizona, is taking a short breather before training for a race on Feb. 19 in Austin, Texas. His goal is to raise $12,000 at each of 12 marathons in 2012.

"I definitely have down times and I've cried a lot of tears, but I get back up and think 'what's the next thing I can do to get the word out.'"

For more information,

www.curechm.org and click on EJ Scott's Racing to the Cure.

Follow his progress on twitter at @ejscott@12marathon 2012,

or ejcurechm.blogspot.com.