The Gilbert Family Foundation is investing $21 million to launch a new research initiative to find a cure for neurofibromatosis type one (NF1), officials announced on Friday.
The foundation, which is the private foundation from Dan and Jennifer Gilbert, said the donation also aims to build opportunity in the City of Detroit.
In all, the $21 million will support 18 research grants with the goal of testing new treatments. The grants will go to researchers from universities and medical research institutions throughout the U.S. and Europe.
Dan and Jennifer's son, Nick, was diagnosed as NF1 died at the age of 26 last year.
Nick was diagnosed as a child with NF1, a genetic condition that causes non-cancerous tumors to grow on the brain, spinal cord and skin. There is no cure.
According to the foundation, the Next-Generation NF1 Models Initiative follows three other research initiatives developed by the Gilbert Family Foundation. Others include the Vision Restoration Initiative, Brain Tumor Initiative and Gene Therapy Initiative.
“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,” Jennifer said in a statement. “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.”
"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 models generated by the projects will eventually be hosted at Nick Gilbert Neurofibromatosis Research Institute when it opens in 2027. It's part of a massive project with Henry Ford Health and will be the first brick-and-mortar institute dedicated to neurofibromatosis.
