How can you quantify all the good that exists in the golf world? On a warm spring evening in Scottsdale, the answer could be found on the pages of binders scattered throughout the hitting bays at Topgolf. More than 300 members of the Scottsdale golf community had turned out, paying up to $1,000 a ticket for a fundraiser for the nascent ForeBatten Foundation, but the binders told a larger story. They contained a list of the silent auction items donated by golfers, golf courses and golf companies from around the country: a pair of Berckmans Place tickets for the final round of the Masters; a dream trip for four to Bandon Dunes; tee times at Riviera, Oakmont, Winged Foot, Pinehurst No. 2 and many others; tons of cool gear; a round of golf with Paige Spiranac; and a once-in-alifetime chance to play the Annenberg Retreat at Sunnylands, the intensely private Dick Wilson design that has long been a playground for Presidents.

“This has to be the greatest collection of golf experiences ever assembled,” said Tim Jackson, of the course design firm Jackson Kahn, which in recent years renovated the Dunes Course at MPCC and built Bob Parsons’ new Scottsdale National. By the end of the night, $630,000 had been raised. “The support is amazing and overwhelming,” said Jackson’s partner David Kahn, who founded ForeBatten and organized the event along with his wife, Karen. “The golf community is a strong,close-knit group of people who truly do care for each other.”

This loving embrace has sustained the Kahns through the most wrenching time of their lives. In February 2017, their twin daughters Amelia and Makenzie were diagnosed with Batten disease, the cruelest verdict imaginable. Vision loss is typically the first symptom, and both girls, now 8, are already struggling with deteriorating eyesight. Powerful seizures follow, usually within a year or two. The Kahns liken Batten to a cross between Parkinson’s and Alzheimer’s, because eventually both girls will be robbed of their motor skills, memory and ability to speak. Chewing food becomes impossible, necessitating feeding tubes. Internal organs inexorably shut down. Life expectancy is in the late teens to early 20s.

“The golf community is a close-knit group who truly do care for each other,” says Kahn, whose twin girls are battling Batten disease.

“The golf community is a close-knit group who truly do care for each other,” says Kahn, whose twin girls are battling Batten disease.

In the face of such a crushing future, how do you keep going? The Kahns are determined to maximize the present for their girls. Makenzie, a goofball with Shirley Temple curls, is infatuated with penguins, so her parents are on a quest to help her see all 18 species in person. They recently traveled to a zoo in Camden, N.J., to meet a blue fairy penguin, and to SeaWorld in San Diego to spend time with a Macaroni. The family is seriously considering jetting to New Zealand to cross the yellow-eyed penguin off the list.

Amelia, who has a more intense personality but deeply expressive blue eyes, has a similar ardor for monkeys, and Jane Goodall, the world’s foremost expert on chimpanzees, has long been her hero. After some correspondence, Goodall sent her a signed book as part of a care package, and every day since, Amelia has raced to the mailbox hoping for more. (Karen is considering sending fake packages, because why not?) When the Kahns heard that Goodall would be at the Hollywood Bowl for the 2017 premiere of the documentary Jane, they arranged for Amelia to spend twenty minutes with her. They bonded intimately, and David still gets choked up thinking about what that night meant to his daughter.

Batten is so rare that drug companies have had little incentive to invest in a possible cure. The $630,000 raised at Topgolf is already funding gene research therapy that has shown promise in arresting the advance of the disease. The next step is stem cell therapy, which might reverse some of the damage. “Every day it becomes more of a possibility,” says David. So the Kahns will continue to fundraise; another event is in the works for this autumn. “It gives us some sense of relief that at the end of the day we did everything we could,” says Karen. “We can’t just accept this. Even if we can’t save them, we’re going to fight for our girls, and for every other kid who has been diagnosed. This foundation could wind up being our whole purpose.”

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