• New initiative, launched on World NF Awareness Day, focuses on developing improved models to understand neurofibromatosis type 1 (NF1) with the goal of rapidly testing new treatments.
  • 18 grants will be provided to leading medical research institutions in the United States and Europe.
  • The Next-Generation NF1 Models Initiative is the Foundation’s fourth research initiative focused on accelerating a cure for neurofibromatosis.


DETROIT, May 17, 2024 – Gilbert Family Foundation, a private foundation established by Dan and Jennifer Gilbert to accelerate a cure for neurofibromatosis type one (NF1) and build opportunity in the city of Detroit, today announced $21 million in grants to launch the Next-Generation NF1 Models Initiative. The $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.

The creation of the Next-Generation NF1 Models Initiative addresses the need for more advanced models of the NF1 disease, which are key to developing improved treatments. It follows three other research initiatives developed by Gilbert Family Foundation: the Vision Restoration Initiative, Brain Tumor Initiative and Gene Therapy Initiative. The Foundation and sister nonprofit, NF Forward, has committed more than $125 million into research to cure neurofibromatosis.

“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, Co-Founder of 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 18 research grants were selected after rigorous peer review following an open request for proposals issued in early 2023. The funded projects will develop innovative NF1 preclinical models that will enable more robust NF1 drug discovery and translation into human clinical trials.

These projects place a special emphasis on organoid, assembloid, and other in vitro 3D tissue and organ models, which are organ-like assemblies of tissues grown in a lab environment. These models add depth to mechanistic studies, which focus on the mechanism of action for a disease. They are also more tractable to drug screening, meaning researchers can more easily test whether a drug is more likely to be effective on any given disease target. The research initiative will also include some next generation in vivo models focused on NF1-associated brain tumors, peripheral tumors and behavioral manifestations related to the disease.

“I’m grateful to the Gilbert Family Foundation for their crucial grant supporting our research in understanding neurofibromatosis,” said Dr. Jürgen Knoblich, PhD, Austrian Academy of Sciences. “With this funding, we aim to develop an advanced brain organoid model, a steppingstone for discovering anti-tumor drugs and advancing neurofibromatosis treatments.”

The full list of researchers include:

  • Budd A. Tucker, PhD, University of Iowa
  • Cherry Gupta, PhD, Battelle Memorial Institute
  • David Gutmann, MD, PhD, Washington University, St. Louis
  • David Solomon, MD, PhD, University of California, San Francisco
  • David Wood, PhD, University of Minnesota
  • Eric Raabe, MD, PhD, Johns Hopkins University
  • Evelin Schröck, MD, University Hospital Carl Gustav Carus at the TU Dresden, Germany
  • Gabsang Lee, PhD, Johns Hopkins University
  • Gregory Way, PhD, University of Colorado Anshutz
  • Jason Meyer, PhD, Indiana University
  • Jürgen Knoblich, PhD, Institute of Molecular Biotechnology, Austrian Academy of Sciences, Austria
  • Michelle Mattson-Hoss, PhD, Infixion Bioscience
  • Nereo Kalebic, PhD, Human Technopole, Italy
  • Piotr Topilko, PhD, IMRB, France
  • Rebecca Dodd, PhD, and Dawn Quelle, PhD, University of Iowa
  • Robert Kesterson, PhD, Pennington Biomedical Research Center
  • Sergiu Pasca, MD, Stanford University
  • Silmara de Lima, PhD, Boston Children’s Hospital, Harvard University
  • Xitiz Chamling, PhD, Johns Hopkins University

The preclinical models generated in these projects will ultimately be hosted at the Nick Gilbert Neurofibromatosis Research Institute (NGNRI) when it opens in 2027. NGNRI is a new research institute announced in September 2023 that will be headquartered in Detroit as part of Henry Ford Health + Michigan State University’s new research building.

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. It was named after Dan and Jennifer’s son, Nick Gilbert, who passed away from complications associated with NF1 in May 2023.



About Gilbert Family Foundation:

Gilbert Family Foundation is a private nonprofit foundation founded by Jennifer and Dan Gilbert to accelerate a cure for neurofibromatosis type 1 (NF1) and build economic opportunity and equity in the city of Detroit. Gilbert Family Foundation supports groundbreaking, cutting-edge research in hopes of eradicating NF1, a genetic disorder that causes tumors to grow on nerves anywhere in the body. Additionally, the Foundation supports the economic stability and mobility of residents in Detroit by investing in wealth-building opportunities and breaking down systemic barriers. For more information on Gilbert Family Foundation, please visit gilbertfamilyfoundation.org.

About the Nick Gilbert Neurofibromatosis Research Institute:

The Nick Gilbert Neurofibromatosis Research Institute (NGNRI) is the world’s first brick-and-mortar research facility solely focused on finding a cure for neurofibromatosis or NF. Named in memory of Nick Gilbert, who passed away from complications related to NF in 2023, NGNRI seeks to discover and develop improved treatments and cures for neurofibromatosis type 1 and other debilitating neuronal diseases and related conditions. NGNRI paves the way for more personalized health care by leveraging next generation technologies, including ‘organoids’ or organ-like assemblies of tissues grown in a lab environments, and advancing leading research. NGNRI will be housed within the Henry Ford Health + Michigan State University Health Sciences research campus.