EJ Scott Runs Blindfolded to Raise Money for Disease
The boyfriend of "True Blood" star Deborah Ann Woll takes to the streets to help find a cure for a rare genetic disease.
Running 12 marathons in 12 months may seem like a daunting task for anyone; however, running them blindfolded seems unimaginable.
EJ Scott -- who has been dating Deborah Ann Woll, who plays vampire Jessica Hamby on HBO’s True Blood, for almost five years -- is in the midst of completing this task, running his 10th marathon blindfolded Sunday in Chicago, due to a rare disease he has called choroideremia.
After being diagnosed in 2003, Scott’s vision has been progressively decreasing, and with only 10 percent of his vision left, his eyes are sensitive to light, generating the need for the blindfold. His goal is to raise $12,000 per marathon, increasing awareness and funds for the disease to help find a cure.
The training involved with running these marathons, as well as the planning process of raising money in each city, has become a full-time job for Scott. “There is nothing else I do, that’s it,” he told The Hollywood Reporter. It’s surprisingly taking up every moment of my day.”
Scott began his ambitious goal in January in Arizona and has paid his own expenses travelling across the country to fulfill his mission. After running his first marathon in October 2010, Scott had the idea of, “what if,” challenging himself to run 12 marathons in 12 cities in a matter of 12 months.
Before beginning his training, Scott said he was a “fat smoker” who hadn’t run or exercised for the majority of his life. Taking on the task of losing 70 pounds, he found friends and family as sponsors to support his weight loss, raising $14,000 for the disease and so began his quest to raise a significant amount more through these marathons.
The reason for this journey, Scott said, is to help research efforts and to find a cure for this disease.
Choroideremia is a rare genetic disease in which the essential proteins in the person’s eyes and the loss of cells protecting the eyes from light sensitivity cause the person to lose their vision. Though there isn’t currently a cure, Scott said he hopes for breakthroughs for the sake of others with the disease, who include including his brother and nephew, and he looks to Dr. Jean Bennett, of the University of Pennsylvania, who is focused on finding a treatment.
“There’s a panic element to it of, ‘Oh no, I don’t want this to happen to me, I don’t want this to happen to my brother, I don’t want this to happen to my nephews,’” Scott said. “I think it’s unfair that blindness kind of gets overlooked and I think we also are responsible for part of that. A lot of people that go through what I’m going through don’t talk about it, they don’t ask for help. They are in denial about it and no one’s going to help you if you don’t ask for help, so I think the worst thing is silence and I’m speaking up.”
Along the way, Scott has rallied support from Woll’s True Blood castmates through signed donations that he has auctioned off, as well as that of cyclist Lance Armstrong, who commended his bravery in an on-camera interview.
Woll has been a great support for Scott as well. “I have to be the can do and positive voice,” she told THR. “So when his motivation lags I can be there to remind him how incredible he is and what a huge difference he is making for not only those who suffer from choroideremia but also all those who are inspired by his determination and spirit. Otherwise it's all him. I'm just proud to hold his hand.”
“I guess reward-wise, it’s happening and I’m almost done with it,” Scott said about the journey so far. “I’m not quite reaching my goal, but I’ll definitely be rewarded once I cross that finish line in Las Vegas, that will be a big milestone for me, no matter what I’ve done, that will be something.”
Scott has raised $70,000 to date, almost halfway to his goal of $144,000, he said.
He will end his journey in Las Vegas on Dec. 2. Supporters can help Scott and donate to the cause through his website, www.EJScott.com.