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Family foundation of Cleveland Cavaliers owner Dan Gilbert invests $21M for neurofibromatosis cure research

Dan Gilbert's son Nick suffered from neurofibromatosis, a genetic disorder that causes tumors to grow on nerve pathways anywhere in the body. He died in 2023.

DETROIT — The family foundation of Cleveland Cavaliers owner Dan Gilbert has announced a $21 million grant commitment to help accelerate the search for a cure for neurofibromatosis.

Gilbert's son, Nick, suffered from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow on nerve pathways anywhere in the body that has no known cure. Nick Gilbert died in May of 2023 at the age of 26.

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According to a release from the Gilbert Family Foundation, their $21 million investment "will support 18 unique research grants representing distinguished researchers from leading universities and medical research institutions in the United States and Europe."

“NF1 affects about one in 2,500 births, meaning millions of people worldwide experience debilitating and occasionally life-threatening symptoms including blindness, deafness, tumors and more,” said Jennifer Gilbert, wife of Dan and mother of Nick, who is also the co-Founder of the Gilbert Family Foundation. “Those who face NF inspire us every day to identify more innovative approaches to this challenging disease. These investments will accelerate the discovery of treatments that address both the symptoms and underlying cause of neurofibromatosis.”

The foundation says the 18 funded projects "will develop innovative NF1 preclinical models that will enable more robust NF1 drug discovery and translation into human clinical trials."

Ultimately, the models generated by the funded projects will be hosted at the Nick Gilbert Neurofibromatosis Research Institute (NGNRI) when it opens in 2027 as part of the new Henry Ford Health + Michigan State University research building in Detroit. 

The Gilbert Family Foundation says NGNRI will be "the first brick-and-mortar institute solely dedicated to neurofibromatosis, and one of the first institutes to leverage organoid technology and other novel models to address a single disease."

In conjunction with sister nonprofit NF Forward, the Gilbert Family Foundation says it has committed more than $125 million into research to cure neurofibromatosis.

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