At our annual meeting in Detroit this fall, more than 170 researchers, clinicians, students, and partners from nearly 50 institutions came together around one goal: accelerating a cure for neurofibromatosis type 1 (NF1). For the first time, participants were able to see our entire NF1 research portfolio in one place. Take a look at the video above to learn more about the conference and its impact from the team behind the work.

Many of these teams had been working in separate labs, on different continents, without much chance to compare notes. In Detroit, they shared results, traded contact information, and started talking about sharing resources and launching joint projects.

That’s what our new approach is about: supporting NF1 research from bench to bedside. We now fund research at every stage, from early exploratory studies and foundational science to the tools the whole field relies on, then on to therapies and clinical studies. We also deliberately connect labs with different strengths, because a disease this complex needs people working together.

Talks covered NF1-associated nerve tumors, brain tumors, vision impairment, and cognitive and behavioral symptoms. Early-career scientists presented posters and got feedback straight from senior researchers. Six breakout sessions tackled the hard problems: 3D tissue models, vision restoration, gene therapy and delivery, clinical trials, and computational tools. Attendees also called for stronger reproducibility and agreement on outcome measures that matter in the clinic.

Sharing is part of how we work, too. When one lab’s data stays on one lab’s computer, the next lab starts from scratch. So we support the NF Data Portal and NF Research Tools Central, where researchers can find out whether a model or reagent already exists.

We don’t do this alone. Our sister organization, NFX, funds bold, high-impact research to discover and develop targeted treatments for NF1, helping carry promising science toward patients. And the Nick Gilbert Neurofibromatosis Research Institute (NGNRI), opening in spring 2027, will be the world’s first research facility devoted entirely to finding a cure for NF. Its guest researcher model will let scientists around the world run fully supported parallel labs there, with expert teams and advanced tools, without leaving their home institutions.

The Gilbert Family Foundation, NFX, and NGNRI each focus on a different stage of the bench-to-bedside journey, from early laboratory discoveries to treatments that reach patients. Since the meeting, we’ve announced new funding opportunities and expect to release more. You’ll see it when you believe it, and we believe a cure is possible.