Nicklaus Hosts Fundraiser Tournament for Rare Disorder at Creighton Farms

Famed pro golfer Jack Nicklaus hosted a weekend of fundraising and golf in Loudoun over the weekend, culminating in a golf

tournament at Creighton Farms Monday and raising $1.2 million for the Nicklaus Children’s Health Care Foundation and The National PKU Alliance.

The weekend began with more than 360 people at a kick-off welcome at the Middleburg Barn, featuring 11-time all-star, two-time World Series winner and seven-time Cy Young Award winner Roger Clemens, performing as “DJ No Requests.” On Sunday, the group went to Salamander Resort an evening hosted by Nicklaus with cocktails, dinner, a silent auction and a fireside chat with Nicklaus hosted by the Golf Channel’s Charlie Rymer.

Monday’s golf tournament near Aldie had 230 players.

The National PKU Alliance seeks a cure for the rare genetic disorder, Phenylketonuria, which affects about one in every 12,000 newborns and if left untreated can lead to intellectual disabilities, seizures, and mental disorders. All babies are tested for PKU soon after birth.

According to Nicklaus, the donation from the fundraising weekend, around $600,000, will multiply the annual research budget into PKU about six times.

The National PKU Alliance was selected in part because there is a child living at Creighton Farms who suffers from the disorder. When Jill and Jerry Elkins had their twins Hudson and Charleston five and a half years ago, Hudson was diagnosed with PKU.

Most often, PKU is passed to children by two parents who are carriers of the disorder but don’t know it. But even if both parents carry the gene, there’s still only a 25 percent chance the child will inherit the disease. But it means a lifetime of carefully managing the disorder, in particular through a diety that strictly limits phenylalanine, which is found mostly in foods that contain protein.

“Hudson has to eat mostly medical food to ensure he doesn’t consume more protein than his body can process,” Jill said. “Right now, a quarter of an egg or two slices of normal bread is more protein than his body can process in day.” She said about 80 percent of his diet is a medical beverage, and all his food is carefully weighed and measured.

He also must endure monthly blood tests, and if he were to eat the wrong thing, could suffer irreversible brain damage.

For Nicklaus, nicknaked “The Golden Bear,” golf now is about doing good for children.

“I play maybe 20 rounds of golf a year, and I’d say that 18 of them are probably at charity events, so it’s basically all I do,” Nicklaus said. He said since he and his wife Barbara started their foundation, based in North Palm Beach, FL, they have raised just over $100 million at events like the one over the weekend in Loudoun. The nonprofit provides free services and programs to more than 1,000 hospitalized children through its various programs.

“It’s taken care of a lot of kids, and that’s what we like about it,” Nicklaus said.

Creighton Farms is home to a golf course Nicklaus helped design, and which has hosted the Creighton Farms Invitational was created in 2012. Nicklaus still holds the record for most major championships won, with 18 under his belt. He also competed in more major championships than any other player, 164.

rgreene@loudounnow.com

Leave a Reply