Friday, Oct. 20, 2017 | 2 a.m.
When former “Jersey Boys” star Jeff Leibow organized the first NF Hope benefit concert in Las Vegas in 2011, he was hoping the event would turn into something more than an annual awareness and fundraiser for the Neurofibromatosis Network, an organization dedicated to families and individuals suffering from the little-known but widespread genetic disorder.
“I hoped, but it wasn’t until after the second year that I thought it could be a reality,” Leibow says. “I just [thought] wouldn’t it be cool if we could do this in cities across the country every year, maybe a couple dozen, and I never really let that go. I hoped quietly to myself I would see the seventh and eighth and ninth and 10th concerts, and now we’re seeing it become reality.”
Leibow left “Jersey Boys” in 2014 to become the director of development for the Chicago-based network and the organizer of the benefits, which are just now breaking out of the Las Vegas market. The first NF Hope concert in New York was held in May and the inaugural Chicago event is set for April.
Meanwhile, the seventh annual Las Vegas show is set for 1 p.m. Oct. 22 at the Palazzo Theatre, with performers including Clint Holmes and Kelly Clinton, Mark Shunock and Cheryl Daro, the stars of “World’s Greatest Rock Show” at the Stratosphere and “Tenors of Rock” at Harrah’s and more. Local radio personality Chet Buchanan will host and ticket information can be found at nfhopeorg.
Leibow and his wife, Melody, will perform as well, continuing with a tradition of singing a song chosen by their 8-year-old daughter Emma, who was diagnosed with Neurofibromatosis when she was nine months old. “Usually the song comes from a movie she’s excited about, so this year we’re doing ‘True Colors,’ the Justin Timberlake and Anna Kendrick version from ‘Trolls,’” Leibow says. “She really has a knack for picking the perfect song for the concert, and this will be a great one to sing.”
Neurofibromatosis (NF) is a genetic disorder of the nervous system characterized by tumors that can grow on any nerve in the body without warning. It affects approximately 128,000 people, more common than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined.
Leibow says Emma has about 30 tumors that they’re aware of and went through an extensive surgery over the summer, but she’s doing very well. “If you saw Emma on the street you probably wouldn’t think a lot of it, but that’s not always the case with NF,” he says. “Just because somebody looks perfect on the outside doesn’t mean there isn’t something going on, and that’s always been the biggest challenge in getting support. NF shows itself in different ways. But just because it isn’t one of the better supported diseases out there doesn’t mean it doesn’t need help.”
The Las Vegas event is helping out in a different way this year, with a portion of its proceeds going to the Route 91 shooting victims’ fund. For Leibow, it was a natural choice.
“This concert is born in Las Vegas and I’m proud that NF Hope will always have been founded in this city. The people and performers in this city have been so kind and generous and supportive over the years, and I’ve only been here nine years but I feel like I was born here,” he says. “This is a really good opportunity to celebrate that and give back to the people who need it right now. And knowing we stopped to pay homage to this city and stand behind its people is important and necessary.”