RARE Daily

Gilbert Family Foundation Establishes Neurofibromatosis Research Institute

September 8, 2023

Rare Daily Staff

The Gilbert Family Foundation said it would create the Nick Gilbert Neurofibromatosis Research Institute in partnership with Henry Ford Health + Michigan State University Health Sciences.

This new institute will be housed within Henry Ford Health + Michigan State University’s new research building on Henry Ford Health’s east campus, which is set to open in 2027. The construction of this part of the overall new facility is expected to cost $50 million and will be funded by the Gilbert Family Foundation. Additionally, the foundation has committed $190 million over ten years to support operations and research.

The Nick Gilbert Neurofibromatosis Research Institute 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.

The Nick Gilbert Neurofibromatosis Research Institute will collaborate with research institutions and researchers from around the world to create novel disease models using organoid technology and other research methodologies. These organoids or “mini organs in a dish” allow researchers to rapidly test potential drug treatments to see the positive and negative impacts of those potential treatments on healthy and unhealthy tissue. The nature of this technology will also allow for more personalized healthcare for Henry Ford Health and NF patients.

Neurofibromatosis (NF) is a genetic disease that causes tumors to grow on nerve pathways anywhere in the body. NF affects one in every 2,000 births throughout the world and an estimated 4 million people worldwide are living with some form of NF, which can be either inherited or be the result of a spontaneous change in a gene, according to the Children’s Tumor Foundation.

NF1 is the most common of the three types of neurofibromatosis, and commonly sees tumors develop in the brain or on the spinal cord. While NF1 tumors are generally not cancerous, they may cause significant deformities and health issues such as blindness.

Dan and Jennifer Gilbert’s late son Nick was diagnosed with NF1 as a child. Throughout his life, he championed neurofibromatosis awareness and passionately supported research into the disease. The Gilbert Family Foundation and sister nonprofit NF Forward have invested nearly $100 million into research to cure neurofibromatosis.

Stay Connected

Sign up for updates straight to your inbox.