A new information network has been launched in the hopes of improving the quality of care Canadians living with neuromuscular diseases receive, no matter where they reside.
“This network brings together researchers, clinicians, allied health officials and patients from all over the country to work together to improve clinical care, to make sure it’s more equal across the country,” explains Lawrence Korngut, neurologist at the Calgary Neuromuscular Clinic. “(The network aims) to promote research and make Canada a cutting edge place to do this type of research and help us accelerate how quickly we find treatment and cures for these different conditions.”
The Dixon family knows firsthand the challenges neuromuscular diseases present.
Five-year-old Ella and her eight-year-old brother Nevan have muscular dystrophy. The newly launched Canadian Neuromuscular Disease Network is meant to connect patients, like Ella and Nevan, with physicians and researchers across the country.
Jeremy Dixon, Ella and Nevan’s father, hopes the network will shed light on the 150 different neuromuscular disorders.
“It’s frustrating from a parental standpoint because you’re always looking to solve the problem, by any means necessary,” said Jeremy. “When you don’t have all the answers, naturally you try to find them any which way you can.”
“What this will provide is the opportunity for these leading scientists and researchers to collaborate and bring that information together and hopefully forge new paths to finding cures.”
