Gilbert Family Foundation Commits $11 Million to Combat Vision Loss in NF1 Patients

  • The Gilbert Family Foundation’s Vision Restoration Initiative is the second in a series of medical initiatives working to eradicate NF1 and its debilitating symptoms.
  • Initiative will provide a platform for collaboration and fund research specifically aimed at reversing vision loss caused by NF1.
  • The $11 million commitment follows a $12 million Gene Therapy Initiative in December 2018.

April 11, 2019 [DETROIT, MI] – The Detroit-based Gilbert Family Foundation, a private foundation established by Jennifer and Dan Gilbert, today announced the Vision Restoration Initiative, the Foundation’s second research initiative working to accelerate the development of therapies for neurofibromatosis type 1 (NF1).

“We recognized the importance of connecting top researchers from across the country to work collaboratively in finding a cure for NF1,” said Dan Gilbert, Co-Founder of the Gilbert Family Foundation. “Under this newest initiative, the Foundation is providing funds, and more importantly, a platform to bring together scientific leaders and their multidisciplinary expertise. We are invested in bringing some of the brightest minds together with the kinds of talent and capital that is needed to beat the devastating effects of neurofibromatosis.”

NF1 causes tumors to grow on the optic nerves connecting the eyes to the brain in an estimated 20 percent of patients, causing many of them to lose their sight. In an effort to reverse this vision loss, the Foundation will allocate more than $11 million in research grants to develop innovative therapies that either repair or replace the damaged optic nerves.

The Foundation utilized a rigorous and hands-on approach to assemble a ‘Dream Team’ of ophthalmology, neuroscience, and NF1 experts from across the United States. The distinguished researchers include:

  • Larry Benowitz, PhD, Boston Children’s Hospital
  • Zhigang He, PhD, Boston Children’s Hospital
  • Roger Packer, MD, Children’s National Health System
  • Michael Young, PhD, Massachusetts Eye and Ear Infirmary
  • Andrew Huberman, PhD, Stanford University School of Medicine
  • Jeffrey Goldberg, MD, PhD, Stanford University School of Medicine
  • Michael Fisher, MD, Children’s Hospital of Philadelphia
  • Robert Avery, DO, Children’s Hospital of Philadelphia
  • Donald Zack, MD, PhD, The Johns Hopkins University
  • Daniel Goldman, PhD, University of Michigan
  • Thomas Reh, PhD, University of Washington
  • David H. Gutmann, MD, PhD, Washington University in St. Louis

“I am excited to join the team that the Gilbert family has put together with the goal of discovering and optimizing therapeutic candidates for vision protection and restoration, and to translate these to patients with NF1 and optic tumors,” said Jeffrey Goldberg, MD, PhD, at the Stanford University School of Medicine.

“I am extremely grateful to the Gilbert family for their investment in this important area of NF1 research,” said David H. Gutmann, MD, PhD at Washington University in St. Louis. “The ability to work with some of the finest scientists in the world and collectively focus our energies on vision protection represents an unprecedented opportunity to find new treatments for individuals with NF1 optic gliomas.”

The Team will focus on developing three types of products:

  • Neuroprotection/Neuroenhancement Therapy: Therapy designed to prevent further vision loss in NF1 patients with mild vision loss. Researchers will work to develop therapies that protect the optic nerve from further damage, while boosting its vitality and performance.
  • Exogenous Cell Replacement Therapy: Aimed at returning sight to NF1 patients with significant vision loss. Researchers will work to generate new, healthy cells for transplantation into patients’ eyes. These transplanted cells could then regenerate the optic nerve.
  • Endogenous Cell Replacement Therapy: Also aimed at returning sight to NF1 patients with significant vision loss. However, instead of generating new cells for transplantation, researchers will work to develop therapies that stimulate the patient’s eyes to generate new cells that would regenerate the optic nerve.

The Gilbert Family Foundation launched with a $150 million commitment from Jennifer and Dan Gilbert to fund groundbreaking, cutting-edge research to accelerate a cure for NF1, as well as community efforts in the city of Detroit. In partnership with the Milken Institute Center for Strategic Philanthropy, the Gilbert Family Foundation has established initial focus areas to guide its research efforts.

In December 2018, the Foundation announced its $12 million Gene Therapy Initiative to fund research focused on developing therapies that address the underlying genetic abnormalities of NF1. This initiative provided research grants to nine research teams around the world. The Gilberts and their Foundation have funded a total of $64 million to date in the fight against NF.

For more information on the Gilbert Family Foundation, visit: gilbertfamilyfoundation.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 NF1, a genetic disorder that causes tumors to grow on nerves anywhere in the body. The Gilbert Family Foundation supports groundbreaking, cutting-edge research in hopes of eradicating the disease. NF1 affects nearly three million people worldwide. The Foundation also supports philanthropic efforts in Detroit, Michigan. For more information on the Gilbert Family Foundation, please visit gilbertfamilyfoundation.org.


Gilbert Family Foundation Announces $12 Million Gene Therapy Initiative to Address Underlying Cause of NF1

  • The Gilbert Family Foundation’s Gene Therapy Initiative is the first in a series of the Foundation’s medical initiatives to eradicate NF1.
  • The initiative will award funding to institutions and researchers exploring developmental and curative therapies to address the underlying genetic abnormalities of NF1.

December 12, 2018 [DETROIT]The Gilbert Family Foundation, a private foundation established by Jennifer and Dan Gilbert, today announced its first major initiative around gene therapy research.

The Gilbert Family Foundation’s goal is to accelerate the development of curative therapies that address the underlying genetic abnormalities in neurofibromatosis type 1 (NF1) patients. Over the next three years, $12 million in research grants from the Gilbert Family Foundation will fund several renowned multi-disciplinary research teams to identify which gene therapy techniques are most promising for NF1. The Foundation utilized a rigorous and extensive process, including peer review, to identify top researchers and projects in each of the initiative’s gene therapy focus areas.

The distinguished researchers and institutions chosen include:

  • Charles Gersbach, PhD, Duke University
  • Eric Pasmant, PhD, Paris Descartes University
  • Andre Leier, PhD, University of Alabama
  • David Bedwell, PhD, University of Alabama
  • Deanne Wallis, PhD, University of Alabama
  • Robert Kesterson, PhD, University of Alabama
  • Allan Jacobson, PhD, University of Massachusetts
  • Miguel Sena-Esteves, PhD, University of Massachusetts

The Gilbert Family Foundation believes that directly repairing, replacing, or bypassing the NF1 gene mutation is an important piece to curing NF.

“We are committed to funding revolutionary and big-idea research,” said Dan Gilbert, Co-Founder of the Gilbert Family Foundation. “The teams we have partnered with share this vision and our family is honored to be working closely with this talented group of researchers and physicians.”

NF1 drug development has previously focused on addressing the symptoms caused by the disease. This important initiative takes an alternative approach by working to develop therapies that address the underlying genetic causes of NF1. This includes gene replacement, gene editing, RNA editing, exon skipping, and nonsense mutation suppression.

The Gilbert Family Foundation launched with a $150 million commitment from Dan and Jennifer Gilbert to fund groundbreaking, cutting-edge research to accelerate a cure for NF1, as well as community efforts in the city of Detroit. In partnership with the Milken Institute Center for Strategic Philanthropy, the Gilbert Family Foundation has established initial focus areas guiding its research efforts.

NF1 causes tumors to form on nerves anywhere in the body, which can lead to disfigurement, blindness and cancer. NF1 can also result in learning disabilities, bone deformities and cardiovascular issues. The course of the disease is both unpredictable and variable among individuals.

“We have been deeply impacted ever since our oldest son Nick was diagnosed with NF1 as a toddler, and believe this research will benefit numerous families affected by NF1 around the globe, as well as our son,” said Jennifer Gilbert, Co-Founder of the Gilbert Family Foundation.

For more information on the Gilbert Family Foundation, visit: gilbertfamilyfoundation.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 NF1, a genetic disorder that causes tumors to grow on nerves anywhere in the body. The Gilbert Family Foundation supports groundbreaking, cutting-edge research in hopes of eradicating the disease. NF1 affects nearly three million people worldwide. The Foundation also supports philanthropic efforts in Detroit, Michigan.  For more information on the Gilbert Family Foundation, please visit gilbertfamilyfoundation.org.