If he chose to, Saville Kellner could dwell on the dizzying irony: A businessman who raises funds for scleroderma research gets diagnosed with the most devastating form of the disease.
But that would miss the greater point of Kellner’s journey from compassionate contributor to dedicated activist.
It’s a road that has led him to help produce the Cool Comedy, Hot Cuisine fundraiser to benefit the Scleroderma Research Foundation on Thursday evening at the House of Blues at Mandalay Bay. Hosted by Bob Saget, the event will feature Jay Leno and musician Ben Folds with chefs Susan Feniger, Mary Sue Milliken and Rick Moonen creating the menu. Great funny, great food, great cause. (For tickets and donations: www.srfcure.org or 1-800-441-2873.)
Kellner, CEO of Lake Industries and other businesses, is on the foundation’s board and has taken an increasingly active role in raising the public’s awareness of scleroderma, a chronic autoimmune disease that hardens the skin and internal organs. Medical outcomes are good, and treatments are increasingly effective for limited scleroderma. Diffuse systemic scleroderma, however, is terminal.
Kellner, 52, was diagnosed with the more severe form of the disease in November 2011. As fate would have it, he first started learning about scleroderma’s existence eight years earlier through Border Grill owners Susan Feniger and Mary Sue Milliken. The chefs lost a close friend to the disease, and Kellner volunteered to help them raise money for research.
More than great cooks, Feniger and Milliken are also blithe spirits who contribute to a variety of charities and causes. Looking back, Kellner counts that relationship as a blessing that helped prepare him for the fight of his life.
It also reminded him of things more important than one man’s existence. Raising awareness and contributing to what he hopes will one day be a cure for a terminal disease: Now that’s a flag worth flying.
“It turned out to be a positive thing in a lot of ways,” he says.
It didn’t start that way, of course. The diagnosis came after Kellner for months experienced shortness of breath, uncommon fatigue, and saw his hands turn blue. (“Bluer than a Smurf,” he says, laughing.) He was concerned enough to see a series of physicians.
“I was sick for a long time, but I didn’t know what it was,” he recalls. “I was getting more and more out of shape, struggling to breathe on the soccer field. I attributed it specifically to age and becoming out of shape.”
Although his hands showed signs of the disease, more insidious changes were occurring inside. After an initial diagnosis in Las Vegas, a follow-up examination at Johns Hopkins Hospital in Baltimore determined Kellner suffered from the more severe form of scleroderma.
“Even though I was involved with fundraising, getting diagnosed with the disease was the most ironic thing in the world,” he says.
He admits Googling for more information about the disease. He pulled up research and medical definitions and even photos. It would have been easy to get obsessed with the devastating details.
Instead of falling down that rabbit hole, he quit the home computer research and decided to fight back through a health and fitness regimen and an emphasis on positive thinking. The last part, he acknowledges, he comes by naturally.
Kellner reacted to the news not by retreating, but by charging forward.
“I wasn’t as devastated as I might have been,” he says. “I suppose I’m kind of a positive guy, maybe almost a naive guy in that sense. I thought, ‘Oh my God, how lucky am I that I got a disease I’m so well connected with.’ ”
Which, I suspect, is not the way a lot of people would take such a diagnosis. But then Saville Kellner isn’t like most people.
Rather than turn inward and get lost in the shadows of his life, he’s determined to walk in the light and raise funds and awareness.
It’s a battle worth fighting, and a life worth living.
John L. Smith’s column appears Sunday, Tuesday, Wednesday, Thursday and Friday. E-mail him at firstname.lastname@example.org or call 702-383-0295.