Dan Gilbert is honoring his son Nick by putting millions into research on neurofibromatosis, a rare genetic disorder that still has no cure.
Dan Gilbert, the Cleveland Cavaliers owner and Rocket Companies chairman, is channeling the grief of losing his oldest son into a major effort to fund research on neurofibromatosis, the rare genetic disorder that took Nick Gilbert’s life in 2023.
Gilbert told CNBC that his family’s foundation is contributing about $50 million a year toward NF research, with the aim of advancing treatments and, eventually, finding a cure. The disease causes tumors to grow on nerve tissue and can affect patients throughout their lives.
NF is among the most common rare genetic disorders in the United States, affecting about 1 in every 2,000 births, or roughly 170,000 Americans, according to the report. There is still no cure.
Nick Gilbert developed his first tumor shortly after he was born, his father said. It was on his optic nerve, between his eye and brain. The tumor was stable for several years before it began growing when Nick was nearly 6, leading to his first chemotherapy treatment.
The disease shaped much of Nick’s life. He later underwent major surgery, additional chemotherapy and radiation, but continued to build friendships, attend Michigan State University and work as an intern in business development at his father’s company. By 2018, Gilbert said, some tumors had become harder to control, requiring more surgeries and treatment.
A tumor on Nick’s brainstem eventually grew too quickly to manage. Gilbert said the tumors were benign but still caused severe damage. Near the end of his life, the disease affected Nick’s ability to breathe, hear, see and communicate.
Nick had become a familiar figure in both Detroit, his hometown, and Cleveland, where he was a presence at Cavaliers games. Since his death, his family has sought to keep his name tied to both community work and medical research. Gilly’s Clubhouse, a sports bar in downtown Detroit named for Nick’s nickname, grew out of a project he had been developing before he died. His siblings also started The Gilly Project, a nonprofit created in his honor.
The Gilbert Family Foundation, launched by Dan and Jennifer Gilbert in 2015, has made curing NF a central focus. Gilbert said one annual benefit in Detroit raised $12 million in a single night.
The foundation has partnered with the Children’s Tumor Foundation, which called Gilbert’s involvement in NF research “critical,” according to CNBC. Gilbert served on the organization’s board for more than 20 years and helped fund research that led to the first FDA-approved treatment for inoperable NF tumors. Two such treatments are now approved, with others in development.
Gilbert said the mission remains larger than treatment alone. “In his legacy and his honor, we’re still, to this day, trying our hardest to wipe this disease off the planet,” he said of Nick.
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