• Nearly $100 Million has been invested to date toward NF research
  • New Brain Tumor Initiative includes 5 total research projects funding drug development, preclinical animal model development, and clinical trials


November 14, 2022 [DETROIT, MI] – The Gilbert Family Foundation, a private foundation established by Dan and Jennifer Gilbert to accelerate a cure for neurofibromatosis type one (NF1) and build economic opportunity and equity in the city of Detroit, today announced $23 million in grants to fund research projects as part of the organization’s Vision Restoration Initiative (VRI) and Brain Tumor Initiative (BTI).

Five grants totaling more than $7 million will be invested into BTI, and nearly $16 million will be invested into 13 research projects supporting VRI.

“NF1 is a complex and unpredictable disease that affects 1 in 3,000 people around the world,” said Jennifer Gilbert, co-founder of the Gilbert Family Foundation. “Since our son Nick’s diagnosis, we’ve witnessed first-hand how this disease impacts the lives of NF1 patients and their families. By launching the Brain Tumor Initiative and expanding the Vision Restoration Initiative, we hope to accelerate the discovery of therapeutic options for NF1 patients and ultimately eradicate brain and optic pathway tumors for good.”

BTI focuses on identifying and developing therapeutic strategies to effectively treat NF1-associated transformed gliomas. Gliomas are the most common primary central nervous system (CNS) tumors in NF1 patients, usually involving optic pathways in children. These tumors can spontaneously transform into higher grade tumors, causing greater risk to NF1 patients. BTI seeks to conduct studies to provide critical characterization of NF1 transformed gliomas and identify the most promising treatments for patients.


The BTI researchers include:

  • John Maris, MD, Children’s Hospital of Philadelphia
  • Chelsea Kotch, MD, Children’s Hospital of Philadelphia
  • Thomas De Raedt, PhD, Children’s Hospital of Philadelphia
  • David Gutmann, MD, PhD, Washington University in St. Louis

“The primary aim of our studies is to increase our understanding of the biology and behavior of glioma in patients with neurofibromatosis type 1.” said Chelsea Kotch MD MSCE, an attending physician and clinical researcher at Children’s Hospital of Philadelphia. “Through large-scale retrospective and prospective analyses of clinical and molecular data, we will determine risk factors for tumor development and evaluate the approaches to and outcomes of treatment; this knowledge will ultimately improve the care of patients with NF1 who develop brain tumors.”

The Gilbert Family Foundation’s expanded support for VRI seeks to address a common yet unmet need for NF1 patients. Approximately one in every five NF1 patients develop optic pathway gliomas (OPGs): tumors on nerves that connect the eyes to the brain. Over time, the affected nerves degenerate, and many patients ultimately lose their vision. Today, there are no therapies to reverse this nerve damage and restore vision in NF1 patients with OPGs. The Gilbert Family Foundation’s Vision Restoration Initiative (VRI) is dedicated to solving this unmet clinical need. Thirteen world-class NF1, ophthalmology and neuroscience experts are collaborating as part of a scientific “Dream Team” to develop first-in-kind therapies to restore sight to NF1 patients.


The VRI researchers include:

  • Jeffrey Goldberg, MD, PhD, Stanford University School of Medicine
  • Yuan Pan, PhD, MD Anderson Cancer Center
  • Donald Zack, MD, PhD, John Hopkins University
  • Larry Benowitz, PhD, Boston Children’s Hospital
  • Zhigang He, PhD, Boston Children’s Hospital
  • David Gutmann, MD, PhD, Washington University in St. Louis
  • Thomas Reh, PhD, University of Washington
  • Daniel Goldman, PhD, Regents of the University of Michigan
  • Peter Baranov, MD, PhD, Schepens Eye Research Institute, Inc.
  • Michael Young, PhD, Schepens Eye Research Institute, Inc.
  • Yuan Zhu, PhD, Children’s National Medical Center
  • Robert Avery, DO, Children’s Hospital of Philadelphia
  • Michael Fisher, MD, Children’s Hospital of Philadelphia

“Our team hopes to expand on the findings we made in earlier phases, with an increased emphasis on several potentially translatable strategies for neuroprotection and vision restoration in NF1,” said Zhigang He, researcher at Boston Children’s Hospital. “This funding will help us identify new targets for RGC protection, test the protective and regenerative effects of positive hits, develop a gene therapy approach to restore NF1-like GAP function in NF and develop myelination-promoting treatments for restoring vision in NF1 test subjects.”

This new round of commitments brings the Gilbert Family Foundation’s total investment into curing NF1 to more than $95 million.

The Gilbert Family Foundation launched with a commitment to fund cutting-edge research to accelerate a cure for NF1 and has established three initial focus areas guiding its research efforts. In addition to BTI and VRI, the Gilbert Family Foundation also includes the Gene Therapy Initiative (GTI), which is focused on developing curative therapies that address the underlying genetic abnormalities in NF1 patients.

In addition to their investments from the Gilbert Family Foundation, Dan and Jennifer Gilbert raise money for NF1 research through NF Forward, which hosts an annual gala called The beNeFit in Detroit each November. This year’s beNeFit is the 10th annual gala. In total, over $45M dollars have been raised for the Children’s Tumor Foundation and NF Forward through the event. More information can be found at NFForwardDetroit.org.



About the Gilbert Family Foundation

The 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. The 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 the Gilbert Family Foundation, please visit gilbertfamilyfoundation.org.