​Toronto (May 17, 2022) – On World Neurofibromatosis Awareness Day, UHN Foundation announces an anonymous gift of $11 million in support of neurofibromatosis (NF) research. NF is a genetic disorder affecting approximately one in 10,000 Canadians. It results in the development of innumerable tumours throughout the nervous system, including the brain, spinal cord and peripheral nerves, and can cause complications such as disfigurement, deformities, blindness, hearing loss and an increased risk of cancer.

The Elisabeth Raab Neurofibromatosis Clinic was established in 2015 at Toronto General and Toronto Western hospitals, part of University Health Network (UHN) and is the first – and remains the premier – clinic of its kind in Canada. It offers clinical care, clinical research and basic science research for adults living with NF.

Overseen by co-Directors Dr. Vera Bril and Dr. Gelareh Zadeh, the clinic provides the multidisciplinary care required for neurofibromatosis under one roof. As patients often have six to nine doctors depending on the complexity of their condition, UHN's breadth of specialists means the clinic is a one-stop shop for most patients.

"Currently there is a shortage of medical and scientific experts in the neurofibromatosis field," says Dr. Zadeh, who is Medical Director of UHN's Krembil Brain Institute, Head of Neurosurgery at UHN and a Senior Scientist with Princess Margaret Cancer Centre. "This gift, one of the largest single donations ever for neurofibromatosis research, will be transformative in our approach to supporting collaborative research and discoveries for improving the outcome of patients. It is also providing us with a tremendous opportunity through establishing the Elisabeth Raab Early Career Research Chair in Neurofibromatosis to promote research and development excellence in neurofibromatosis care."

With this new investment, we will be able to further understand what happens in neurofibromatosis tumours that start out benign and then become cancerous," adds Dr. Vera Bril, who is also a neurologist and clinician-investigator with Toronto General Hospital Research Institute. "As current treatment options are limited, this research is essential to help identify more targets for therapeutic intervention."

"The generosity of this anonymous $11 million gift will enable further research to better understand this relatively rare condition and provides hope for adults living with neurofibromatosis," says Louise Aspin, Senior Vice President and Chief Development Officer of UHN Foundation.

About UHN Foundation

UHN Foundation raises funds for research, education and the enhancement of patient care at Toronto General and Toronto Western hospitals, Toronto Rehabilitation Institute and The Michener Institute of Education at UHN. Together with our donors, we are helping UHN pursue the knowledge that makes all our lives better. For more information, visit UHN Foundation.

About UHN

University Health Network consists of Toronto General and Toronto Western hospitals, the Princess Margaret Cancer Centre, Toronto Rehabilitation Institute, and The Michener Institute of Education at UHN. The scope of research and complexity of cases at University Health Network has made it a national and international source for discovery, education and patient care. It has the largest hospital-based research program in Canada, with major research in arthritis, cardiology, transplantation, neurosciences, oncology, surgical innovation, infectious diseases, genomic medicine and rehabilitation medicine. University Health Network is a research hospital affiliated with the University of Toronto.

Media Contact

Lisa Arai
UHN Foundation
Director, Brand Marketing
Phone: 416-278-6737
Email: lisa.arai@uhn.ca

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