Skip to content

Connecting families affected by intellectual disabilities

Doctors, health advocacy groups and families gathered for the first ever neurodevelopmental disability conference in Alberta.
WEB 0108 neurology 1 jr
Children play with Lego blocks at the Lego-Social Skills Development Group in St. Albert. Families that deal with intellectual disabilities such as Autism, Aspergers or ADHD can benefit from programs like this, where kids can learn social skills through real life play. Accessibility to such programs was discussed at Alberta's first Neurodevelopmental Disability Conference.

Doctors, health advocacy groups and families gathered for the first ever neurodevelopmental disability conference in Alberta.

The conference, held at the University of Alberta July 24 and 25, helped to identify the current gaps in patient care and to catalyse international research collaborations. Doctors from across Canada and the United States came together to discuss new treatments and health-care strategies for NDD. Families were invited to discuss their struggles finding support in their day-to-day lives.

Neurodevelopmental disabilities (NDD) affect emotions, learning abilities, self-control and memory functions in the brain. Types of disorders with a neurodevelopmental origin include autism, fragile-X syndrome, attention deficit and more. About 16 per cent of Albertans are affected by NDD, which can lead to significant burdens on both families and the health-care system.

Dr. Fran├žois Bolduc, associate professor of pediatric neurology at the U of A, said he was excited to collaborate with world-renowned doctors on new treatments for NDD. Specifically, they've discovered that the drug metformin can improve cognitive and social disabilities.

"This will be the first treatment for this kind of disorder based on biology, not just the symptoms. It treats the core of the problem via the molecular pathways responsible for the symptoms," Bolduc said.

Metformin is the first-line medication for the treatment of Type 2 diabetes. It's been used for many years, so the side effects are well-known, and it's affordable.

Bolduc and his team of scientists first discovered metformin's new potential in a 2016 study on fruit flies. A year later, studies were conducted on mice at McGill University in Montreal. Bolduc then connected with American doctors who tested the drug and found significant improvement in their patients.

"Patients unable to speak started to speak, sleep was improved and, most importantly, it helped with behaviour. Patients who were quite aggressive became manageable," Bolduc said.

He said the next step is to start clinical trials in Canada.

This conference wasn't just for the scientists, but for parents and children affected by NDD as well. Bolduc said he wanted to include the fields of education, psychology, physiology and therapy to improve the quality of life for these families.

Families who attended the conference were able to voice concerns about access to programs and support systems during the town-hall meeting. Bolduc said there was quite a lively discussion.

Locally, Dyan Eybergen runs a Lego-based social skills group for children with NDD in St. Albert and Edmonton. She said it takes extra parenting skills to manage children with behavioural disorders, but programs such as Lego play can make a huge difference.

"There is so much these families need to access but they can't because of wait times or financial issues," Eybergen said.

Access to a support system was definitely lacking for Karen Kelm, a mother of three children diagnosed with fragile-X syndrome. The Calgary mom went to her first NDD conference in Detroit eight years ago. While she said she was happy to be there, she was also angry and upset because at that time there was nothing similar offered in Canada.

Kelm launched Fragile X Alberta, an association to connect families with both professional help and peer support. She also helped organize the NDD conference in Edmonton.

Kelm said the biggest thing she took away from the conference was the magnificence of having professionals and parents collaborating and working together.

"We're not re-inventing the wheel," Kelm said. "We're all working together to make that wheel go just a little further."