The McGill University Health Centre's Research Institute is taking the lead in a new Canadian network that aims to help children with brain-based disabilities.
The CHILD-BRIGHT network will be based in Montreal, with co-directors at the BC Children's Hospital and The Hospital for Sick Children in Toronto.
The network has received $25M in funding, half from the federal Canadian Institute of Health Research and the rest from private donations.
It aims to be patient-oriented, with a focus on listening to needs from families dealing with disabilities such as cerebral palsy, autism, and other learning impairments.
"It was really important to listen carefully to what families and youth were telling us in terms of what their knowledge needs were and what aspects of health for their children were really missing," said Dr. Annette Majnemer, a senior scientist at the MUHC Research Institute who will head the CHILD-BRIGHT program.
The research will focus on new therapies to develop and stimulate the brain when children are younger and the brain is still malleable.
Studies will also be done on the mental health of children and families and on reorganizing services to make the system easier for families to navigate.
'Scariest time in my life'
The push for more services catered to explaining brain-based disabilities to parents who are dealing with a new diagnosis is good news for many families, including the Geller-Prupas household.
Alana Geller said the period before one of her twin sons, Avi, was diagnosed with cerebral palsy at 10 months was very trying.
"It was the scariest time in my life...wondering what was wrong."
Alana and her husband, Aren Prupas, turned to Google and Facebook to consult with other parents even after the diagnosis, because the information and comfort was lacking when they dealt with health professionals.
"It was like, 'Here's a diagnosis, good luck to you and goodbye,'" said Prupas, who thinks the CHILD-BRIGHT network can change the experience for other parents.
"What's so exciting...is creating a network, a place where families can go, learn about the condition, find out about the different treatment options...but most importantly, have sort of a community, a place of like-minded individuals who are going through the same journey that you're going through.