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B.C. partners with UBC and McGill to develop gene-editing therapy for Surrey boy
B.C. will work with UBC and McGill University to develop a personalized gene-editing therapy for three-year-old Surrey resident Gurmoh Gill and create a pathway for rare genetic diseases.
The B.C. Ministry of Health says it will work with two Canadian universities to develop a personalized gene-editing therapy for Gurmoh Gill, a three-year-old Surrey boy with a rare, progressive neurodegenerative disease. The province announced the initiative Sept. 19.
Gill has a rare form of spastic paraplegia caused by a de novo mutation, meaning neither parent carries the genetic mutation. The mutation is often linked to severe early onset and can cause progressive muscle stiffness, speech difficulties and leg weakness by affecting spinal-cord nerves that control movement. His parents, Stalin and Navpreet Gill, say he now has more difficulty climbing stairs than he did several months ago.
Less than a week before the announcement, the family had raised more than $2.7 million to help pay for the creation of a personalized gene therapy. Gill is among the few known cases of the disease in Canada. Over the previous five months, the family and community members held fundraisers, including a walk from downtown Vancouver to the legislature in Victoria, to raise awareness of rare diseases affecting children.
Health Minister Ravi Kahlon said the Provincial Health Services Authority and BC Children’s Hospital will partner with the University of British Columbia and McGill University’s Montreal Neurological Institute-Hospital, known as The Neuro, to establish a route from diagnosis to potential therapy for people with rare genetic diseases. BC Children’s Hospital and UBC will work on potential therapies, building on B.C.’s genomics, clinical-care and research capacity and connecting patients with expertise outside the province when needed.
Dr. Federica Di Palma, the PHSA’s chief health genomic officer, said genomic diagnosis is increasingly providing answers for children with rare diseases. The next challenge, she said, is turning those answers into treatment opportunities through a pathway that begins with one child but is intended to help more families in the future.