10 Years of Hope: The NF Hope Concert Story

Author: Jeff Leibow
Published On: 05/04/2021

In Spring of 2010, our daughter, Emma was diagnosed with Neurofibromatosis Type-1. Just 6 months earlier, we heard that word for the first time in our lives. Neurofibromatosis. Like so many new NF families, we made the rookie mistake of Googling it. There’s a reason the first piece of advice you receive from doctors and fellow NF families is to close the computer. This sage is advice I wish we had received before we typed that word into the browser.

With a disorder as variable as NF, looking at pictures and reading about cases online in no way prepares you for your child’s personal NF journey. Finally, we stopped wading through images and stories and instead made a call to an organization that could help guide us.

We didn’t know what to expect, but that call was the best decision we could have made for Emma and for us. The organization was NF, Inc. (soon to become Neurofibromatosis Network), and the person who answered the phone was the Executive Director, Kim Bischoff. In that conversation, she spoke to us not as an executive for a national nonprofit, but as a fellow NF parent, who wanted to be sure we (like every new NF family that called) had a place to go and a person to speak with when they had questions about what an NF diagnosis meant for their child. The connection to Kim, NF Network and its staff was immediate; what they did for families and how they did it just made sense to us.

So, when Kim asked if there was anything we could do to help the organization, not only did we immediately say yes, but in that moment the idea that would one day become the NF Hope Concert was born.

The inaugural NF Hope Concert took place at the Las Vegas Hilton (on the stage that Elvis made famous) on June 12, 2011. Despite our lofty hopes, the concert was nowhere near the success we dreamt it would be. With just 197 in the audience (surrounded by more than 1,300 empty seats), a meager auction, a concert that went way too long and less than $7,000 raised, we were sure this would be our first and final attempt at producing a benefit concert…until one of our patrons asked, “When is the next one?” To which, we answered, “We’ll let you know.”

Before we knew it, we were meeting with entertainment directors at nearly every hotel on The Strip, searching for a smaller venue to go with our more realistic expectations. And before we knew it, we began looking ahead at what the concerts could be.

In 2013, just prior to our third concert, we met our dear friend Paul Bodner. With Paul’s help, big things started to happen for the NF Hope Concert. We found a new home at The Venetian Las Vegas, and we took huge strides toward our quiet goal to raise $1,000,000 by our 10th year. Paul’s time with us was way too short (he lost his battle with cancer in 2014), but the mark he made not just on the NF Hope Concert, but also our family, was indelible. In 2015, we honored Paul with our very first Advocate of Hope Award. That year, we also had our very first six-figure event.

The early years also, saw some incredible talent hit the NF Hope Concert stage including Grammy Award winning group All-4-One, 98 Degrees member Jeff Timmons, Golden Globe winner Pia Zadora, American Idol winner Taylor Hicks, the stars of Jersey Boys, Phantom of the Opera, Rock of Ages and so many more. There were also our “regulars”, incredibly generous performers and musicians who were always the first to raise their hands to help like Vegas icon and two-time Grammy Award nominee Clint Holmes, the incredible Kristen Herztenberg and our friend and musical director Keith Thompson.

In 2012, doctors discovered a brain tumor in Emma’s MRI. It was very small, but they wanted to continue monitoring it to be safe. A year later, her MRIs revealed the tumor had grown in size by a factor of 14. It was a sobering reminder of what we were fighting for, and it provided a boost of inspiration to work harder and do more. Emma was just one of more than 128,000 living with NF. We wanted to be sure NF Network would be there for all of them.

One idea was expanding the concerts to new cities.

A number of cities topped the list of potential new markets to break into. With the concert still in its infancy, it seemed implausible to develop a brand new event potentially thousand of miles away. But after we broke through the $100,000 ceiling at our 2015 concert, we started preparing.

On May 8, 2017, we presented New York City’s inaugural NF Hope Concert at SubCulture in Manhattan. It featured a group of amazing Broadway talent from shows like BEAUTIFUL, PHANTOM OF THE OPERA, COME FROM AWAY, JERSEY BOYS, BANDSTAND and more. It was a success, and with it, we planted our flag in the Big Apple.

Bolstered by the success in NYC, we decided to dive right into Chicago. With an incredible committee lead by friend and unrelenting NF supporter, Florence Nogaj, we prepared to bring the NF Hope Concert home to NF Network.

On April 17, 2018, Chicago’s inaugural NF Hope Concert descended upon the Metropolis Performing Arts Centre in Arlington Heights. On the stage was a collection of Chicago’s best, including Christopher Kale Jones, John Michael Copolla, Daniel Tatar and new friend Jessy Schram. We also featured NF artists, Avery Rausch. The event was a resounding success, raising more than $50,000 for NF Network.

The following year, the concerts in both NYC and Chicago continued to grow, becoming solid additions to the NF Hope Concert family. We were poised for even more growth in 2020, until everything halted as we were introduced to a term that would change everything - COVID.

In January of 2020, we were preparing for what we hoped would be the biggest most impactful year the NF Hope Concerts had ever had. We were preparing for Chicago’s 3rd annual NF Hope Concert at our beautiful new venue on the North Central College campus in Naperville; our 4th annual event in New York City, which was once again going to be co-hosted by good friend, Peter Saide; and we were getting ready to present our tenth concert in Las Vegas.

Ten years was not the only milestone we were looking forward to celebrating. We were also on the precipice of exceeding $1,000,000 raised by the NF Hope Concerts. Years earlier, we had dreamed of getting here, but now, it was in reach.

All of our hopes for what this landmark year would mean for the NF Hope Concert changed in February as news of the very first cases of corona virus hit the US. In late February, as the virus made its way across the country, we also learned of the passing of our dear friend Peter.

So, with heavy hearts, on March 12, we made the decision to cancel the live Chicago and New York concerts.

Determined, however, to achieve our $1,000,000 goal, we dove into becoming experts at producing virtual events. And on Monday, May 4, 2020, we presented the NF Hope Concert Live Stream featuring a bevy of stars from TV, Broadway and the music industry including pop icon Debbie Gibson, Tony Award winners James Monroe Iglehart and Christian Hoff, TV stars Erich Bergen and Jessy Schram, world renown saxophonist Dave Koz and more. The event was a resounding success. Suddenly, our goal seemed attainable again.

On October 18, 2020, in what became another virtual event, we celebrated Las Vegas’ 10th annual NF Hope Concert, and with it not only reached our seven-figure goal but blew past it.

So, after ten years, 14 live and two virtual concerts, we can now proudly exclaim that we have raised more than $1,000,000 for Neurofibromatosis and taught thousands about the disorder we had never heard of just a decade earlier.

And so, it is filled with hope, that we look to the future and the possibilities that come with it.

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