Batten Disease Benefit in Naperville Raises $350,000

A barrage of networking throughout the community by three Naperville mothers drew 526 people Saturday to the Embassy Suites in Naperville to raise $350,000 to fight a rare disease afflicting the daughters of a friend. In a matter of months, the women — Casey McCormick, Bianca Morin and Whitney Robbins — managed to pull together a fundraiser to benefit the foundation created by former Naperville resident Kristen Kaiser Gray and her husband, Hollywood film producer Gordon Gray, on behalf of their daughters.

Charlotte, 4, and Gwenyth, 2, were diagnosed this spring with infantile NCL Batten disease CLN6, a variant so rare only about 10 cases have been reported in the world. It is such a degenerative genetic disease that life expectancy for children with CLN6 is between six and 12 years. The Grays estimate they need to raise $10 million for research to save children like their daughters; the foundation established in June has about $2.2 million.

“What a night. Honestly I could never have imagined such a successful event and such a sense of community that permeated throughout the entire building,” said Kristen Gray, who graduated from Naperville North High School in 1993. She said she is forever grateful to the Naperville community for its generosity.

Gray said from setup to breakdown, not one element went overlooked. “There was an energy in the room that was so proud and supportive. I can’t really explain it with words, but I felt so lifted up by this group of people,” she said.

Julie Chirico said such a big turnout was the result of the three women bombarding Naperville civic organizations with their message and passion for organizing the benefit. “For this particular fundraiser, it struck a chord with all the young moms. It’s amazing that in such a short period of time, these women put this together,” said Chirico, who with Edward Hospital Foundation Executive Director Meghan Moreno offered guidance in planning the event.

Not only did it draw celebrity hosts Bill and Giuliana Rancic, Naperville’s movers and shakers along with people who grew up with Kristen Gray came out in support of one of their own.

While guests had the chance to bid on Blackhawks, Champagne and golf packages, the Naperville-based items were the most popular, said media relations specialist Jini Clare of Clare Communications. A pair of catered parties for eight served by Mayor Steve Chirico, Mayor emeritus A. George Pradel and Edward-Elmhurst Health System CEO Pam Davis went for $12,000 each, she said.

Clare added that Gordon Gray also provided a football with the signatures of Heisman trophy winners that went for $12,000. “It was remarkable; it was an overwhelming evening,” Clare said. “It was phenomenal how many leaders were there.”

The biggest boost to the benefit came when $100,000 was pledged during the “raise the paddle” portion, where guests had the chance to contribute various amounts to the foundation.

Kristen Gray said her husband was impressed by the outpouring of support. “I know he was very moved when the ‘raise the paddle’ began with so many contributing so much for our girls,” she said.

Besides people from Naperville, the benefit drew families like David and Sara Kennicott, of Carpentersville; Tracy and Jennifer VanHoutan, of Downers Grove; and Julie and Alan Gahlbeck, of Elmhurst, who all understand the ravages of a different form of Batten disease.

The fight continues for the Kennicotts, whose 10-year-old daughter, Bridget, was diagnosed with late infantile Batten disease when she was 4, and for the VanHoutans, whose son, Noah, 11, and daughter, Laine, 9, have a variation of Batten disease. The evening gave the Gahlbecks the chance to share hope for other families; they lost their 10-year-old son, Ethan Keller, last month to late infantile Batten disease.

Kristen Gray said Saturday’s benefit was a boost to her morale. “While this journey can feel very lonely and isolating, for those five hours, and frankly for the entire time I was in Naperville, I felt the love and support necessary to get me through this,” Gray said.

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