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 grown in a lab environment, and advancing leading research. NGNRI will be housed within the Henry Ford Health + Michigan State University Health Sciences research campus.
Neurofibromatosis (NF)
NF1 is a complex disease with a huge range of symptoms that have vastly differing impacts on quality of life. Some individuals with NF1 experience almost no disease symptoms. Others have severe learning and cognitive impairment, reduced or complete loss of mobility, and frequent life threatening or even fatal cancers.
Key to finding improved treatments and cures, is to establish models of NF1 and implement drug discovery systems that are closer to the true NF1 condition in a human patient. Recent medical breakthroughs have resulted in the ability to grow mini human organs or ‘organoids’ in a dish outside of the body. This means for the first time we have a more faithful drug discovery system for NF1. NGNRI will grow mini organs or more accurately ‘spheroids’ as NGNRI will screen patient derived tissue samples after only 10-14 days of growth outside of the body to be fast enough to intervene to benefit a given individual with NF1.
NGNRI will continually adopt the latest and most powerful new technologies as well as develop its own reagents, tools and platforms to ensure no stone is left unturned in NGNRI’s quest to deliver improved treatments and cures for NF1.
Organoids
Purpose
To honor the life and legacy of
Nick Gilbert by inspiring hope, driving innovation, and accelerating a cure for NF.
Maddox Gibson
Mission
To discover and develop improved treatments for NF1 and other debilitating neuronal diseases through innovative and collaborative research that positively impacts the efforts of the entire NF1 research community.
Adam Pearson
Vision
To ensure a world where everyone impacted by NF can live a healthy, hopeful and happy life.
The Institute
NGNRI is for the NF community. The goal is to have as broad an impact as possible and to enable breakthroughs at home or away. NGNRI will provide advanced translational research infrastructure and expertise in drug discovery assay development, screening, hit identification, hit optimization thru to a preclinical candidate that may be partnered with a pharma company to bring it to the clinic. NF researchers from leading universities and medical schools do not need to change the culture of their existing explorative or discovery-oriented lab and instead will be provided a lab at NGNRI that they can run in parallel without leaving their existing institution. NGNRI will fund the parallel lab at NGNRI to turn a mechanistic or clinical insight into a discovery assay and drug candidate. In addition, NGNRI will serve as a repository of tools, models, reagents and data for the NF community.
Dr. Ivan Baines
Chief Operating Officer and Project Lead
Through the course of a career spanning over 30 years working in some of the world’s leading life sciences research institutes, Ivan’s specialty is to design, implement and optimize scientific infrastructure and operations to fulfil the maximal potential of the available resources for performing top level research. He has either been responsible for all aspects of the design and implementation of the institute including construction of the building (Max Planck Florida Institute for Neuroscience), or part of the founding team (Max Planck Institute of Molecular Cell Biology and Genetics, Dresden; Center for Systems Biology Dresden; Physics of Life Cluster of Excellence, Dresden) or guided the process as a consultant (GIGA, Liège; BIOZ/BIOTEC Dresden; BioCity Leipzig; SWC, London) for the establishment of 8 research institutes.
Ivan is most inspired when the newly created research institute is part of a broader initiative to promote a region’s potential. Having contributed to the revitalization of Dresden’s (Germany) life sciences sector, Ivan has now been entrusted with guiding the creation of the Nick Gilbert Neurofibromatosis Research Institute (‘NGNRI’) in Detroit, Michigan. NGNRI is partnered with Michigan State University and Henry Ford Health and is to be co-located with its partners in a spectacular new research building to be completed in summer 2027. From a lifetime performing, managing, mentoring, leading and strategizing research, Ivan has the unique ability to inspire, design, and create research initiatives that make a difference.
Contact Us
While NF1 is our primary focus, NGNRI includes related cancers and neurological disorders in its journey to find cures. Continuing Nick’s selfless commitment to help others, NGNRI always considers the patients’ interests first.