The Gilbert Family Foundation, established in 2015 by Rocket Companies founder Dan Gilbert and his wife Jennifer, was formed in large part to advance research into the genetic condition neurofibromatosis type one (NF1), a rare but serious genetic disorder that affects an estimated 1 in 3,000 children. Like many big medical research donors, the Gilberts have been motivated by personal experience: Their son Nick was born with the condition, which causes tumors to form on nerve tissue, triggering an array of serious symptoms. Sadly, Nick passed away last year at age 26.
Since its founding, the Gilbert Family Foundation has been one of the leading philanthropic forces in NF1 research — and it does not appear to be slowing. Recently, the foundation announced its fourth major research funding effort, committing $21 million to launch its Next-Generation NF1 Models Initiative. Its three-year grants are going to 18 NF research teams at universities and institutions in the U.S. and Europe.
Though neurofibromatosis occurs in approximately the same number of births as cystic fibrosis, another genetic disorder, it is far less well known. But its impacts can be uniquely devastating and particularly difficult to treat.
Treatment of NF is especially challenging because the condition can result from any one of 26 chromosomal mutations; as a result, symptoms and manifestations of the condition vary widely, including tumors in various locations, deafness, blindness and other effects. (NF1, usually diagnosed in childhood, is the most common of the three types of neurofibromatosis. Types 2 and 3, diagnosed later, are much more rare.) Treatment options, including medications and surgery, can help some patients, but there’s not yet a cure for the progressive and potentially fatal condition.
The recently launched Next-Generation NF1 Models Initiative follows three other research initiatives developed by the Gilbert Family Foundation over the last decade: the Vision Restoration Initiative, Brain Tumor Initiative and Gene Therapy Initiative. But this latest focus is especially exciting, as it’s leveraging a new approach to drug testing with the potential to significantly improve and accelerate the search for treatments.
A new research approach fuels hope
Several research studies that the foundation’s new round of grants is supporting will test promising methods called organoid and assembloid technologies, in which researchers use patient stem cells to create tissue and organ cultures that resemble and respond like the actual tissues and organs of the body. These methods can give researchers far more information than they can obtain by testing drugs on single cells. The researchers can use these lab-made tissues or organ cultures to model diseases and test new drug treatments, potentially speeding the drug development process, said Laura Grannemann, executive director of the Gilbert Family Foundation.
Time is always of the essence in medical research. Traditionally, researchers and drug developers conduct early tests of potential new drug treatments on animals; if the tests suggest adequate levels of effectiveness and safety, research can then advance to humans. But the many regulations surrounding drug development involving humans has meant that the process can be agonizingly, if necessarily, slow.
“The promise of this new model is to accelerate that timeline as much as possible,” Grannemann said. “The researchers can use real tissue from a patient to test on healthy and unhealthy tissue to see the impact of a drug on tumors and on the healthy tissue.” Compared to traditional methods, such techniques let researchers much more easily and quickly test whether a drug is likely to be effective.
Researchers focusing on cancer and other diseases are also using organoid and assembloid technologies. That means the NF-specific research that the Gilbert Family Foundation is backing may well cross-pollinate to advance progress in other areas of study.
Through his parents’ philanthropy, the Gilberts’ late son Nick will remain associated with the search for NF cures. In 2023, the Gilbert Family Foundation announced its major funding role in a partnership with Henry Ford Health and Shirley Ryan AbilityLab to build a new medical and rehabilitation facility in Detroit. The foundation is contributing $375 million of the estimated $439 million cost of the facility. The center will house the first brick-and-mortar facility dedicated solely to NF1 research, the Nick Gilbert Neurofibromatosis Research Institute. Construction of that facility is slated to begin imminently and it’s scheduled to open in 2027.
Scientists at the institute will also primarily leverage the organoid technology that the Gilberts’ foundation is seeking to advance with its latest research initiative.
A massive footprint in Detroit
Dan Gilbert amassed a fortune as the founder of Rocket Mortgage (formerly Quicken Loans), one of the largest retail lenders in the U.S. Gilbert has also owned NBA team Cleveland Cavaliers since 2005. He often appears on lists of the richest Americans: Forbes pegs his current net worth at upward of $27 billion.
Despite its significant giving around NF1, the Gilbert Family Foundation is not committed solely to research into that condition. In fact, the bulk of the foundation’s funding has been local and regional giving in the vicinity of Detroit, where Rocket Companies is based. That includes a 10-year, $500 million commitment from the Gilbert Family Foundation and the Rocket Community Fund aimed at revitalizing Detroit’s neighborhoods — funding that included $15 million to eliminate the property tax debt owed by 20,000 low-income homeowners.
That’s just one of Gilbert’s long list of philanthropic, business and investment commitments in his home city, which counts the billionaire as one of its most powerful and influential figures (if not the most influential). They include support for the QLine, the city’s downtown streetcar system, and more recently, backing for local BIPOC artist/entrepreneurs, as my colleague Mike Scutari reported this spring. For years now, Dan Gilbert’s immense prominence in Detroit has sparked debate over whether the megadonor has too much influence in the city where Politico once dubbed him “shadow mayor.”
But all the while, the Gilberts have also kept up their longstanding efforts to advance neurofibromatosis research. Besides the commitments I’ve already mentioned, the Gilberts have long supported NF research at other organizations, including the Children’s Tumor Foundation, Children’s National Health System and the University of Alabama Birmingham. In 2017, they established NF Forward, a nonprofit sister organization that also funds advanced NF research. Through their family foundation and NF Forward, the Gilberts have committed more than $125 million to NF research so far, and it doesn’t appear they have any intention of slowing down.
