updated 10/11/2012 AT 5:00 PM ET
•originally published 10/14/2012 AT 12:00 PM ET
True Blood star Deborah Ann Woll stands by her man – and admires his drive.
The actress is dating E.J. Scott, 36, an activist who is slowly losing his sight and expects to be fully blind by age 50.
Scott is running marathons to raise funds and awareness about choroideremia, a degenerative eye disease that reduces sight to “tunnel vision” before ultimately leaving those who are diagnosed legally blind, reports Men’s Fitness in its November issue, on newsstands now.
Scott – who has dated Woll, 27, for nearly five years – began running marathons to raise money for the disease in January 2012. He plans to run one marathon a month in a different state for 12 months.
“I thought he was very brave to be so open about it. I hadn’t heard of the disease before I met E.J., and I was very moved by his story,” Woll says. “I thought that anyone would could have such struggle in his life and still be positive and motivated is a very special person.”
Scott learned he had the disease at age 27, when his younger brother (then 16) was diagnosed. He would soon learn his older sister was a carrier and his maternal grandfather also suffered from choroideremia.
“I was scared, really angry, and pissed that I was 27 years old and just hearing about it,” Scott says. “It was screwing up my whole family because we all got tested at the same time. It explained a lot.”
Despite his condition, Scott decided to move to Los Angeles to follow his dream of becoming an entertainer. Prior to his diagnosis, he had taken stand-up comedy and improv classes.
While living in L.A., Scott met Woll on an online dating site. After some correspondence, he invited her to see him perform. Scott later moved to Chicago to continue working in improv, but their relationship survived the distance.
Compelled to raise awareness for the disease that was gradually taking away his sight, Scott moved back to L.A. and began hosting stand-up comedy events for the Choroideremia Research Foundation. Then, he began running marathons to raise money.
“E.J.’s a big dreamer and most people who get big ideas have trouble following through. I know I do. But I learned very quickly that when E.J. puts his mind to something, he achieves it,” Woll says. “When he came up with the idea for the 12 consecutive marathons, I knew it would happen.”
But it hasn’t been as easy as Scott had hoped.
“I’m raising a lot of the money on my own, auctioning DVDs on eBay and doing comedy shows in most of the cities,” Scott says. “The donations have been less than I’d hoped.”
Although Scott expects that he will eventually go totally blind, he knows his fundraising efforts won’t be in vain.
“We’ve tried to get funding for this for close to 10 years,” Dr. Jean Bennet, a scientist studying chororideremia at the University of Pennsylvania, says. “What he’s doing could help thousands of people worldwide.”
For more information or to donate, please visit http://www.ejscott.com/give/.