Autism Across the Lifespan

What do you see when you think of autism? Up until recently, I would picture early intervention with children. But what happens once those children grow up? While early intervention and services for children are important, the needs of adults living with autism spectrum disorder (ASD) have gone somewhat unnoticed. Children with ASD grow up to be adults with ASD, and continue to have needs that require supports and services.
Continue reading “Autism Across the Lifespan”

Connecting Families With The Research Community

One of OBI’s major goals is to facilitate collaboration between patients and their advocates, researchers, clinicians, and industry to improve outcomes for those affected by neurodevelopmental disorders. One of the best ways to do this is simply to bring people together which is one of the reasons why OBI’s Integrated Discovery program, the Province of Ontario Neurodevelopmental Disorders (POND) Network, held a parent information day on May 3, 2014 to engage in dialogue with the parents and family members of children participating in POND.“I now know many of the researchers involved in POND very well. The day gave us insight into how they work together and share an interest in the POND network and POND philosophies,” explained Connie Putterman, a parent representative on the POND Patient Advisory Committee. Continue reading “Connecting Families With The Research Community”

Looking at New Ways to Improve the Patient Experience

By: Tiffany Scarcelli, MSc, OBI Management Fellow

When a child becomes seriously ill, there are many concerns, thoughts, and fears that arise in both the child and their family upon their first hospital visit. Will my child respond to treatment? Will they get the best care possible? What many people do not realize is that a child’s care goes beyond medications and procedures to encompass the child’s mental well-being. And often times, this is overlooked as part of their care. To address these concerns, the Hospital for Sick Children – one of the largest centres dedicated to improving children’s healthcare in North America – is doing something innovative. Continue reading “Looking at New Ways to Improve the Patient Experience”

Helping The Patient Be Heard

A key priority of OBI is amplifying the patient voice in research. To this end, OBI has helped establish five Patient Advisory Committees (PACs) which connect patients, their families and their advocates with people working at the frontier of brain research. Continue reading “Helping The Patient Be Heard”