Raising awareness about Williams Syndrome

You can usually count on Rob Dell'Unto for a cheery "good morning" to his Rockville Centre neighbors or a "way to go" pat on the back for his Little Leaguers. But in 2009, the normally upbeat dad found himself sliding into a deep, dark hole.

"I was getting a little depressed," admitted Dell'Unto, 38. "I gained a lot of weight, and really wasn't paying attention to my health."

The primary source of his worries that fall was his daughter, Julia, now 5, who had been diagnosed with an uncommon, genetically-based disease called Williams Syndrome. The lack of a mere 26 genes on one chromosome means she and an estimated 25,000 other Americans will face a lifetime of learning disabilities and cardiovascular disease.

Dell'Unto, a sales manager for a printing company in Manhattan, realized he needed an outlet for his stress. Recalling his days as a high school track runner at St. Francis Prep 20 years earlier, he said he "figured what the heck, let me go out for a run and see how it feels."

At 220 pounds, it didn't feel very good. "I couldn't even run five minutes without stopping," Dell'Unto said.

But a year and a half later, he has emerged from his depression, lost 40 pounds and regained his fitness. More importantly, he found his mission in life: Next Sunday, Dell'Unto, his new best friend, Rob Schiff of Floral Park (also the father of a child with Williams Syndrome), and 54 friends, family members and supporters will run the RXR/TIAA-CREF Long Island Marathon/Festival of Races as part of Team WSA -- the fundraising charity group that Dell'Unto and Schiff founded in 2010 after the two met through mutual friends.

Last year, they recruited 25 other runners, ran the 13.1-mile half marathon and raised $23,000. This year's team has raised more than $11,000 toward its goal of $25,000 and has 56 runners.

"Our main goal is to raise awareness," said Schiff, 40, a New York City firefighter whose son, Evan, 5, has Williams Syndrome. "The money will come later."

One of the new team members is John Honerkamp, 35, an East Rockaway native now living in Manhattan.

"As a competitive runner, you're often so focused on yourself," said the former Chaminade star. "To be attached to this cause, and these two families, it's a great honor."

Dell'Unto and Schiff are part of a significant trend in a sport once viewed as solitary and self-absorbed. Today, it's estimated that about 20 to 25 percent of all marathon/half-marathon finishers raise money for charity.

"It's had a huge impact on the sport, no question," said David Willey, editor-in-chief of Runner's World magazine. "This idea that you can do something to quote 'give back' through training for a race is really powerful and immensely attractive to people."

Dell'Unto and Schiff agree.

"At one point during last year's race," Schiff said, "I thought, 'what am I doing?' But then I said to myself, 'I'm doing it for Evan and Julia and all the kids like them.' "

For more information, visit williams-syndrome.org/ team-wsa.