Luxe Life Blog
Jeff Leibow gives voice to the fight against neurofibromatosis
By John Katsilometes
In his role in “Jersey Boys” at Paris Las Vegas, Jeff Leibow portrays one of the group’s original members, Nick Massi. In one scene that reveals the allowances an entertainer makes to maintain a high level of fame, Leibow-as-Massi confesses that for a time, he told his own children that he was their uncle, rather than father, because he was away from home so frequently that he didn’t want his own kids to feel deprived of a parent.
That is Jeff Leibow in character, but it is not Jeff Leibow’s character.
Leibow and his wife, Melody, are deeply committed to fighting to treat the illness from which their 3-year-old daughter, Emma, suffers. It’s called neurofibromatosis, a largely unknown genetic disorder that weakens the nervous system and disables the body’s tumor suppressor gene. Without warning and seemingly at random, tumors -- in most cases benign growths -- surface and grow on any nerve in the body.
“Just in the last year, we have found eight or nine tumors we have had to check out and have had to deal with,” Leibow says. “Those are just the ones we can feel.”
Leibow is confronting the disease by employing his considerable stage skills and summoning many of his entertainer friends and colleagues for Sunday’s “NF Hope Concert” at the Main Showroom at Harrah’s. The show starts at 1 p.m. Tickets are $25 to $75 (absent fees) and available at Ticketmaster or by calling Harrah’s box office at (702) 369-5111. Tickets also can be purchased at the box office in person Sunday.
Scheduled to appear and co-host the performance are a trio of Leibow’s co-stars in “Jersey Boys,” Travis Cloer, Deven May and Buck Hujabre (understudy of Rob Marnell). The lineup is dotted with a wide range of performers: Bally’s headliner Taylor Hicks (introducing the hosts), Delious Kennedy from All-4-One, Jeff Timmons of 98 Degrees, Cabaret Jazz headliner Clint Holmes, Chris Phillips of Zowie Bowie (currently performing Fridays at Rocks Lounge at Red Rock Resort), Melody Sweets of “Absinthe” at Caesars Palace and Tropicana Laugh Factory headliner Murray Sawchuck and Doug "Lefty" Leferovich. Also billed are “Jersey Boys” swing cast member Douglas Crawford, piano great Philip Fortenberry and vocalists Kristen Hertzenberg and Joan Sobel (late of “Phantom -- the Las Vegas Spectacular”) and Vegas frequenter Niki Scalera.
Sunday’s show is the second benefit hosted by Leibow to help fight NF, which affects 100,000 Americans and is more common than cystic fibrosis, hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs combined. Proceeds go to the NF Network, a nonprofit organization that serves families and individuals suffering from neurofibromatosis.
As Leibow says, there is little federal funding available for NF (he hopes ticket sales and the accompanying online and silent auction for Sunday’s show will reach $15,000) and relatively little in clinical advancement in treatment of the disease.
“We just watch for symptoms and treat them. In some cases, these tumors are operable and can be removed,” he says. “But the problem is these tumors, even benign, can cause problems because they are on a nerve, or in the brain, and cause seizures. There is nothing we can do but take Emma to the neurologist yearly and check her eyes and brain for any significant problems.”
Over the weekend, the Leibows were able to take Emma to her first ballet performance, Nevada Ballet Theater’s performance of George Balanchine’s “Jewels” at the Smith Center for the Performing Arts. But educating the public and raising funds to treat NF is a challenge, and he is in the early rounds of the fight.
“We are hoping to make it a big annual event,” he says. “We hope to grow into a big national organization, and right now we just need people to get involved.”