Before the crowd settled in for the Cavs vs. Celtics tipoff on Sunday, a little girl named Harper Grace walked onto the court and pulled a sword from a stone. It’s a playful tradition at the Cleveland Cavaliers’ annual Bow Tie Game, theatrical, a little magical — and it sets the tone for an evening that’s about far more than basketball.
Now in its fourth year, the Bow Tie Game honors Nick Gilbert, the son of Cavaliers owner Dan Gilbert, who died in 2022 after a lifelong battle with neurofibromatosis, or NF. Cleveland fans knew Nick well. He appeared at multiple NBA Draft lotteries, smiling in his trademark bow tie and becoming something of a good-luck charm for the team. Today, the regular season game designated as the Bow Tie Game carries his spirit and has become something bigger, a gathering point for families affected by NF from across the country.
The most common rare disease you’ve probably never heard of
Alexis Weisbrod, a team lead for the nonprofit NFX, says awareness of neurofibromatosis still lags far behind its prevalence.
“It is the most common rare disease,” Weisbrod said.
The most common form, NF1, occurs in about one in every 2,500 births. The condition causes tumors to grow along nerves throughout the body and can lead to neurological complications, bone abnormalities, brain tumors and learning disabilities. But NF rarely looks the same from one patient to another.
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“It manifests differently in every patient,” Weisbrod said. “So it requires a level of complexity in research that looks different than perhaps some of the diseases people hear about more frequently.”
Still, progress is happening. In the past five years, two drugs have received FDA approval to treat certain NF-related tumors. And in 2027, the Nick Gilbert Neurofibromatosis Research Institute is expected to open in Detroit — the first brick-and-mortar facility dedicated entirely to NF research.
A diagnosis that started with a bow tie
Sean Parr grew up in Massillon, Ohio, before moving to Pensacola, Florida, nearly a decade ago. Like many Cleveland fans, he knew Nick Gilbert from the draft and games. When Nick died, Parr started reading about neurofibromatosis. As he scrolled through articles, something caught his attention.
His son James, now four years old, had been navigating a complicated medical journey since infancy. What started as swelling in his neck turned out to be vascular and lymphatic malformations spreading into his chest. James underwent multiple procedures at UF Health’s Shands Hospital, in Gainesville, Florida, including one surgery that required doctors to deflate a lung to reach a malformation in his chest wall. Through it all, Parr said, his son’s resilience stood out.
“He would bounce back like it was nothing,” Parr said. “If James is fighting this hard, then we can do the fight of just advocating for him.”
As Parr continued reading about NF, he noticed symptoms that sounded familiar, café-au-lait spots on James’ skin and an unusually large head circumference, both common indicators.
“It was a weird moment of, ‘Oh my God — this could be what James has,’” Parr said.
He brought it to his wife, Hannah, who had already been deep in medical research of her own. Together, they raised the possibility with James’ doctors. In late 2024, James was officially diagnosed with NF.
Finding purpose in the fight
After the diagnosis, Hannah sought community through online support groups. Parr processed things differently. “I’ve had trouble with acceptance in my normal day-to-day life,” he said. “But accepting the diagnosis doesn’t equal forfeiture. We’re not giving up. If anything, it provides clarity.”
Connecting with the Gilly Project, the foundation created in Nick Gilbert’s honor, helped channel those feelings into something productive.
“I have all this energy and angst and feelings about NF,” Parr said. “It’s been really good to put that toward something positive.”
More than a game
The Parr family was in the arena Sunday, along with more than a dozen NF families who traveled from out of town for the game. Among them was Harper Grace, an eight-year-old from Chesterfield, Missouri, who was diagnosed with NF1 as a toddler. Her journey has included chemotherapy, 10 brain surgeries, and ongoing treatment for hydrocephalus.
Before player introductions, she took center court to pull the ceremonial sword from the stone. Weisbrod said the event’s reach has grown each year, drawing families from places Michigan, New York, Cincinnati and elsewhere.
“Because of the Bow Tie Game, there are people who’ve received an NF diagnosis and said, ‘Oh, I’ve heard of that — I follow the Cavs,’” she said.
For Parr, hope comes down to something simpler. When asked what gives him strength when he thinks about James’ future, he didn’t hesitate.
“His smile,” he said. “And his laugh. That’s beautiful. It’s the small wins.”
And on Sunday afternoon in Cleveland, those small wins were surrounded by thousands of fans learning about a disease many had never heard of — because one boy in a bow tie made them pay attention.
For more information on NFX and neurofibromatosis research, visit nfxdetroit.org.