On World Neurofibromatosis Day, May 17, UHN celebrated an anonymous donation of $11 million to support neurofibromatosis research and patient care at the Krembil Brain Institute.
Neurofibromatoses are a group of genetic disorders that cause tumours to form in the nervous system. These disorders can cause numerous complications such as vision and hearing loss, skeletal problems, increased risk of cancer and various neurological disorders.
In 2015, UHN established the Elisabeth Raab Neurofibromatosis Clinic—the first-in-Canada multidisciplinary clinic for adults with neurofibromatoses—with sites at Toronto Western Hospital and Toronto General Hospital.
A portion of this generous donation will go towards establishing the Elisabeth Raab Early Career Research Chair in Neurofibromatosis, which will enable the recruitment of a neurosurgeon-scientist specialized in neurofibromatosis research and patient care.
“Currently there is a shortage of medical and scientific experts in the neurofibromatosis field,” says Dr. Gelareh Zadeh, Medical Director of the Krembil Brain Institute and co-Director of UHN’s Neurofibromatosis Program. “This gift will help to promote research and development excellence in neurofibromatosis care. Most importantly, it will strengthen our collaborative work with other leading neurofibromatosis-related programs globally.”
This gift will also support basic research that will spur the development of improved approaches for managing neurofibromatoses. For example, this investment will boost ongoing research into how benign tumours become cancerous.
“Current treatment options are limited, so this research is essential to help identify more targets for therapeutic intervention,” says Dr. Vera Bril, co-Director of the Neurofibromatosis Program and a Clinician Investigator at the Toronto General Hospital Research Institute.
“Our team is so grateful for this gift, one of the largest ever in support of neurofibromatosis research,” says Dr. Zadeh.
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