A critical part of our mission at the Gilbert Family Foundation is accelerating a cure for neurofibromatosis type 1 (NF1) –  and developing viable treatment options for patients living with the disease. Recently, we talked with Ivan Baines, who is a central figure in driving the work.

Baines is COO of the Nick Gilbert Neurofibromatosis Research Institute (NGNRI) and has been working with Gilbert Family Foundation on its NF research initiatives since 2019.

“I was recruited by the late Nick Gilbert, who was an extraordinarily inspirational individual,” says Baines, referencing Nick’s relentless optimism despite the many challenges he faced due to the disease.  He adds, “the whole Gilbert Family is that way.” He came to Detroit to help realize their vision, and has never looked back. Currently under construction, NGNRI will be the first brick-and-mortar facility in the world dedicated exclusively to neurofibromatosis research. For Baines, the milestones he’s most eager to reach tell the story of a research pipeline built with purpose: welcoming the first guest researchers, completing the first screening campaign, identifying the first potential drug candidates, and capturing high-resolution imaging that reveals the differences between NF organoids and healthy ones. What makes NGNRI’s approach unique is both the infrastructure and collaboration behind it. The institute is building the most state-of-the-art organoids screening platform in the world, partnering with Henry Ford Health and Michigan State University to establish Detroit as a leading hub for precision medicine.

“We will find improved treatments and cures for NF1,” Baines says , elaborating, “Treatments that are easier to administer, have fewer side effects, and allow individuals with NF1 to live normal lives.” He emphasizes that quality of life will always be the north star. And this vision extends beyond NF. By demonstrating how personalized, better-informed treatments can be transformative, Baines hopes to open doors for more precise treatment of cancers, neuronal diseases, and other conditions.

To learn more about the Nick Gilbert Research Institute, visit ngnri.org.