By Arthur Lightbourn

Sam and Vivian Hardage spend a lot of time together.

Partly because, Sam explains, “we complement each other,” which is good, considering they have been married for 20 years.

And partly because they devote a lot of time together running and fundraising for their nonprofit Vision of Children Foundation dedicated to finding a cure for genetically-caused childhood vision impairments and blindness, and improving the quality of life of visually impaired individuals and their families.

For Sam and Vivian, it's personal.

After their infant son, now 18, was diagnosed with Ocular Albinism, a visually debilitating condition and one of more than 24 hereditary eye diseases that afflicts some 850,000 children in the U.S., they were told there was “no hope, no cure, no fix, go home.”

Ocular Albinism is an inherited condition in which the eyes do not make the usual amount of a pigment called melanin, reducing visual acuity and often resulting in a lateral, back-and-forth movement of the eyes. The condition is found in boys only, but is inherited from mothers who are carriers but do not contract the disease.

The Hardages were told by doctors that their son would never be able to play sports or live a normal life.

Even more disturbing, they discovered that nobody on the planet was doing research to find a cure.

Sam Hardage, a former Air Force pilot and successful hotel entrepreneur who once ran for governor of Kansas, wasn't about to accept the gloomy prognosis.

But, he and his wife quickly discovered an inescapable fact: “Research,” Sam said, “is driven by funding. If you don't have funding, you don't have research.”

Since nobody else was stepping up to the plate, the Hardages vowed to raise whatever funds were necessary to seed research around the world.

Today, the VOC Foundation supports 23 researchers at 12 institutions worldwide.

One of its key supporters is the blind Italian singer Andrea Bocelli who helped VOC raise millions through several concerts. Bocelli was born visually impaired with congenital glaucoma and lost his complete sight in a childhood accident.

In addition to funding research, the VOC conducts a bi-annual World Symposium, bringing together vision researchers, ophthalmologists and families to discuss the latest progress in vision research.

It also maintains a Web site (www.visionofchildren.org) and a Family Network that enables parents to contact families facing similar vision challenges in their geographic regions to share experiences and offer each other support.

We interviewed the Hardages at the Foundation's offices on High Bluff Drive.
Sam Hardage, 69, who enjoys telling people he's “five feet 16 inches” tall, was born in Jackson, Mississippi.

His father was a salesman for the R.J. Reynolds Tobacco Company.

After his father died, his mom was left with two young sons to raise on her own.

Financially, it was hard times, Sam recalls, but “We grew up in the South, so there was plenty of food. We never felt poor. We had second-hand clothes and hand-me-downs, but we never thought anything about that.”

When he was 18, he was accepted into the U.S. Air Force Academy.

As a member of the Academy's third graduating class, he was commissioned in 1961 and spent five years' active duty as a pilot, chalking up 4,500 flying hours in various aircraft.

In Vietnam, he piloted C-124 Globemasters, carrying everything from bombs to lettuce.
Following his military service, he earned his M.B.A. from Harvard and entered the building and construction business.

He launched his own business in 1969 in Wichita, Kansas, building mobile home parks in 16 states. The company gradually evolved into developing apartment buildings, town houses, high rise office buildings, and, in 1982, hotels.

Sam moved the business to San Diego in 1989. He is the founder, president and CEO of Woodfin Suites Hotels that owns and operates 17 hotels in 11 states; and chairman and CEO of the holding company, The Hardage Group.

A dedicated Republican, Sam served as San Diego County Republican Party Chairman in 1995-1997. Currently, he is an elected delegate for presumptive presidential candidate John McCain and is a member of McCain's national committee.

Vivian (nee Klepper) was born in Pretty Prairie, Kansas, earned her undergraduate and master's degree at Emporia State University, taught high school for a time and was working for a personnel consultant firm in 1981 when she met Sam.

Was it love at first sight?

“Not exactly,” she recalled. “He was a client and a tough taskmaster.”

“I was running for governor of Kansas,” Sam explained. “I asked her who she was supporting in the gubernatorial primary and she was supporting my opponent.”

“Didn't make for a good business relationship,” she chuckled. “But I was converted. I saw the light.”

They married seven years later in 1988.

Despite his visual handicap, their son, Chase, now a senior at Cathedral Catholic High School, “is doing very well, in a lot of different ways,” his mom said.

As a junior, he brought home the gold medal for the 171-pound class at the San Diego Section CIF Wrestling tournament and played left tackle for the offensive Cathedral line throughout the football team's winning season in which it captured the San Diego Division III CIF championship.

Although a cure hasn't yet been found for Ocular Albinism, VOC-funded researchers have identified the responsible gene and developed a universal DNA test to determine whether a woman is a carrier or not.

Researchers in Britain, not funded by VOC, in 2007, announced they were conducting the world's first attempt to treat an inherited eye disorder, Leber's congenital amaurosis, using gene therapy.
Dr. James Bainbridge, who heads the British research at University College London's Moorfields Eye Hospital, was a presenter at the VOC's World Symposium in Capri, Italy, in 2006. Encouragingly, additional gene therapy human trials are now being conducted at the University of Pennsylvania and the University of Florida.

The Hardages are convinced that research studies to treat and cure any one of the more than 24 genetic eye diseases affecting children will ultimately be beneficial for the scientific understanding of possible therapies for all these conditions.

“We hope that we are getting close to the end time,” Sam said, “when we'll have a cure, a treatment that will work for all 24 of these related genetically-caused eye diseases and we can go out of business. That's our goal.”

The VOC Foundation operates out of the The Hardage Group's offices on High Bluff Drive in Carmel Valley (www.visionofchildren.org). To keep overhead to a minimum, the Hardages donate the office space, supplies, accounting and information technology services to the Foundation. It employs a full-time scientific director, a full-time development coordinator and a part-time assistant supplemented by college interns and hundreds of volunteers. The board of directors and scientific advisory board serve without compensation.


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