A magician with “the most powerful wand in the world” and a 7-year-old slide-guitar player joined other performers in Merrick on Saturday to raise money to find a cure for cystic fibrosis.
The first Long Island Performance Festival was organized by Long Beach residents Lona Kaplan-Werner and Jason Werner, whose 2-year-old son, Harlen, has the genetic disease.
“He’s an absolute rock star, this kid,” said Werner, 44. “And thank God, he’s very healthy.”
Saturday’s event at the Merrick Theatre and Center for the Arts helped Werner feel the family is back in charge of their destiny, “taking some of that back.”
“There are so many things I’ll never be able to do for my son,” he said. The disease causes mucus to build up in the lungs and gastrointestinal tract and shortens a person’s life expectancy to 37 years, according to the National Institutes of Health.
Harlen’s medical regimen is intense: about 70 capsules of enzymes every day enable him to digest proteins and fats, and he undergoes twice-daily sessions with a misting system that delivers drugs.
On Saturday, Kaplan-Werner, 34, who has taught drama at the center, was focused on all who contributed to the event, which dimmed the daunting disease’s sway.
“It’s the energy that people put forth — that’s what matters most to us,” she said.
Werner’s brother Richard Werner traveled from California to kick off the show with his “Karaoke Apocalypse,” which included an adult puppet show with three big lemon-headed sailors singing “New York, New York.”
The Long Beach Ukulele Orchestra, children’s musicians, a slam poet and others also were scheduled to perform. The proceeds from the event will be donated to the Cystic Fibrosis Foundation, according to the couple.
A silent auction featured autographed sheet music donated by Robert Lopez, who attended Manhattan’s Hunter College High School with Kaplan-Werner before co-creating the Broadway musicals “Avenue Q” and “The Book of Mormon” and co-writing songs for “Frozen” and “Finding Nemo: The Musical.”
At the request of a family friend, Joe R. Lansdale, perhaps best known for his “Hap and Leonard” crime series, also donated an autographed novel.
Four of Kaplan-Werner’s former drama students returned Saturday to run the concession stand and sing.
“It’s hard to hear such incredible people got stuck with such a difficult situation,” said quartet member Julia Tolchin, 20, who is studying acting at New York University.
“Thank God they are the parents they are, because they really are doing everything they can,” she said.