Golf fans everywhere can bid on what has quickly become the best silent auction in golf. Want to have lunch with Jack Nicklaus? Shadow Bill Coore for a day while he works on a new golf course in Saint Lucia? Take a short-game lesson from Parker McLachlin? Tee it up with Joe Theismann at RTJ Golf Club? Take some buddies for a round at Oakmont, Olympic, Riviera, Fishers Island, Friars Head, Sleepy Hollow, Prairie Dunes, Cal Club, Maidstone and dozens of otherwise unattainable citadels? All of these items and many more, which you can bid on here, speak to the generosity of the golf community.
“Even the stuffiest private club will do the right thing for the right people,” says intellectual property attorney Matt Powers, a friend of the Kahn Family who has been an active bidder and donor in the previous ForeBatten auctions. “The number of people who have gotten behind this cause warms your heart. It seems to grow exponentially every year, which says a lot about the golf community and how it comes together for one of its own.”
On Feb. 18, the silent auction went live, and David, a co-founder of Jackson-Kahn Design, was in a reflective mood. “This is my favorite day of the year, watching the bids start to roll in,” he said. He estimated that he didn’t recognize the names of 85 percent of the bidders. “That’s a good thing,” David said. “We don’t want to reach just friends and family. We need to grow the donor base.
“The people who give, they mean everything to us. Without their support and motivation and encouragement, we wouldn’t have the will to go on. A foundation without donors is just a hobby.”
It is important to note that ForeBatten is currently funding six different studies. With so few kids affected by Batten — Amelia and Makenzie are the only ones in the state of Arizona who suffer from it — there is little financial incentive for pharmaceutical companies to invest in years of research for treatment and a cure.
“ForeBatten’s support has been critical in moving things forward,” says Dr. David Pearce, perhaps the world’s leading researcher on Batten. Pearce points to three separate areas of research that the golf community has directly affected through its generosity: treating the symptoms of Battens; stopping the disease’s advancement; and reversing the damage that has already been done. Amelia and Makenzie have periods of lucidity and mobility. Amelia still goes to karate, and while she no longer kicks or punches at her lessons she still toils to improve her balance and coordination. Makenzie has learned Braille and her spelling is at a 4th grade level. Both girls sometimes use canes or walkers but for now can get around on their own.
If the disease progresses, they will lose everything. Wheelchairs and feeding tubes become inevitable and life expectancy is in the late-teens. But it’s not too late for Amelia and Makenzie if researchers can achieve a breakthrough. Citing the best-case scenario, Pearce makes the analogy of soldiers returning home after suffering a traumatic brain injury. “They can learn to speak again, they can learn to walk again,” he says. “The brain can be rewired. Batten is not quite the same thing, but it is like a brain injury, only one that is chronic because you’re born with it. If we can replace or correct the flawed genes, it introduces the possibility of rewiring the brains of these children.”
Of course, every day that goes by tests the Kahns’ faith. It is the most bitter of ironies that their tireless efforts may benefit countless children but not their own. Still, Karen says, “We have to fight this. And we’re going to keep fighting no matter what. We’re never going to stop.”
This spirit has reverberated throughout the golf world. Theismann, a Hall of Fame quarterback and 3-handicap golfer, is a longtime friend of the Kahn family. For this year’s auction he has donated a day of golf, of which he says, “It’s the least I can do. If Stan or Dave ask for anything, the answer is an automatic yes. I know there are hundreds of other people around the country who say the same thing.” Watching the Kahn family fight so hard for their precious little girls has given Theismann new perspective. “I’ve had this revelation in my life,” he says. “We’re not put on this earth to take. We’re put here to give.”
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