In 1989, Sam and Vivian Hardage received the kind of news every parent dreads. Their infant son was diagnosed with ocular albinism type 1, a rare and debilitating genetic eye disease. While it doesn’t cause total blindness, it can make the world look like a low-resolution image, lacking the details that the rest of us take for granted. And there was no known treatment or cure.
“That was not an acceptable answer for parents looking at this otherwise perfect baby,” says Vivian. “It was devastating. We didn’t want his life to be impacted or diminished.”
The couple decided to launch The Vision of Children Foundation, a nonprofit dedicated to cutting-edge research to cure hereditary blindness and other vision disorders while improving the lives of the visually impaired and their families.
“I was just a mom wondering what we would do,” says Vivian. “And my husband told me we were going to fix this.”
“You’d think that somebody is researching every single thing in the world,” points out Sam, who helms Chase Suite Hotels, a nationwide chain of hotels named for the Hardages’ son. “But when we tried to find researchers and doctors working on ocular albinism, we couldn’t find a single soul.”
Vision of Children, which celebrates its 25th anniversary next year, hasn’t found a cure for ocular albinism yet, but they’ve made great strides. The research they’ve funded through their organization focuses on a variety of genetic eye conditions. Many of the scientists they recruited have been involved since the beginning.
“I thought we’d have this thing knocked out in a year or two,” says Sam. “That shows how little I knew. It’s mind-boggling how complicated the eyes are. We’re buoyed by the fact that we’re on the cusp of major breakthroughs that will change the lives of children with these conditions.”
The promising areas of research include gene and stem cell therapies. Doctors Ken Widder and Jacki Johnson, longtime friends of the Hardages, serve on the board as scientific experts (he’s an MD, she’s a PhD), along with other experts such as Gregory Ostrow, MD, a pediatric ophthalmologist at Scripps.
“We’re in a golden age of potential cures,” says Widder. “Our researchers have found some very intriguing possibilities.”
“When we started, nothing was known about ocular albinism,” says Johnson. “Now we’ve tracked it all the way to the gene level. The scientists have made fantastic progress.”
The Hardages run their organization “lean and mean,” with two full-time employees and minimal overhead. They’ve hosted many major fundraisers, including seven concerts with singer Andrea Boccelli and an event with Ann Romney. They sponsor researchers through grants and host annual scientific meetings to discuss findings.
“We want to cure this and go out of business,” says Sam. (858.314.7917, www.visionofchildren.org) ANNAMARIA STEPHENS