Skip to main content

Remembering Nick Gilbert

By May 8, 2023December 4th, 2023NF1, Story of NF

With great sadness, we share the news that CTF Junior Board Member and former CTF National Ambassador Nick Gilbert has passed away at a far-too-young 26 years old due to complications from NF. Nick was at home with his loving family by his side – parents Dan and Jennifer, and siblings Grant, Gracie, AJ, and Nash. We mourn his passing and offer our deepest condolences to Nick’s family, his loved ones, and friends.

We also remember and are inspired by the way he lived his life: Nick was a genuine optimist who in a recent message to the NF community reflected with signature confidence that “there’s a positive to all the negatives”. He lived this ethos daily, with steadfast purpose and exceptional determination, even as he confronted the serious challenges of NF.  

This singular optimism also fueled a wit and charm that made those who knew him love him even more, and it endeared him to those who only knew him from the news. He famously made headlines when he represented basketball’s Cleveland Cavaliers in the NBA lottery, drawing a coveted top pick. When asked what he thought about being his father’s hero, he said, “Well, I mean, what’s not to like?”

And indeed, there was very much to like about Nick Gilbert. He touched many lives and brought a public presence to NF, which is never easy to do, putting oneself out there. But his reasons were selfless and humble. Upon becoming the CTF National Ambassador, Nick said the following:    

“There is nothing to like about NF nor all of the things that can happen to people who have NF. I don’t have to like it. But I also don’t have to be a victim just because I was born with NF. I did not choose to live with NF. But I do have a choice on how I live. And I choose to live life by enjoying every moment and to always look on the bright side of everything.”

This bright approach to life carried him forward and motivated those around him to fight even harder in the mission to end NF. Whether by emulating his trademark bowtie, or by amplifying Nick’s energy into consequential initiatives that fuel NF research, people were (and still are) emboldened to follow Nick’s examples of resiliency.

Nick’s passing, and that of far too many other NF heroes, is an all-to-real reminder of why we are in this fight against NF, and why we must not stop fighting. While Nick showed us the brave side of NF, and perhaps even the playful side on occasion (he also jokingly teased that a positive to NF treatments/surgery was that one would get extra time to do their schoolwork), the reality is that we all fervently wish our beloved NF heroes wouldn’t have to make these sorts of tradeoffs.

Nick recently remarked that “there’s no need to live in fear”. As we reflect on Nick’s life, we take his insightful message to heart. NF can be many things, but Nick Gilbert's remarkable life is a shining illustration of what one can accomplish in the lottery of life.

Indeed, what’s not to like?

Thank you, Nick, we'll miss you. We’ll keep the fight going.