Kayleigh has Rett syndrome. Seemingly healthy until she was 23 months old, she then lost the ability to speak, to use her hands, and eventually to walk.

Caring for a child with a neurodevelopmental disorder — like Rett syndrome — can consume the life of an entire family. When Kayleigh reached 18, she was discharged from five specialists at the local children's hospital and her care switched to the family doctor. He became responsible for the management of her seizures, cardiac and urological issues, gastrostomy tube, osteoporosis, pain, and so much more. Leaving the coordinated care at the children's hospital for decentralized medical care has been overwhelming for Kayleigh and her family.

Kayleigh’s story is one amongst millions of individuals and families affected by brain conditions. Brain conditions affect an individual's mobility and damage dexterity; they impair memory and the ability to think; they make it hard to see, speak, and communicate. Caring for someone with a brain condition leaves many Canadian families and caregivers feeling isolated and struggling to maintain their own emotional and mental health.


NHCC volunteers Cynthia Milburn (Canadian Epilepsy Alliance) and Terry Boyd (Ontario Rett Syndrome Association) meet with MP Don Davies to discuss the Canadian Action Plan for Brain Health.


Neurological Health Charities Canada (NHCC) know there are solutions — solutions that build directly on the findings of the ground-breaking National Population Health Study of Neurological Conditions.

The first step is for the Government of Canada to work with NHCC on the first-ever Canadian Action Plan for Brain Health. The Action Plan would spur research into desperately-needed treatments and cures and would, by bringing people with brain conditions together with experts, finally develop health and non-health services to truly support those living with brain conditions, their families and caregivers.

NHCC is a coalition of organizations representing individuals and families affected by brain diseases, disorders and injuries.

Go to www.mybrainmatters.ca to learn more about the Canadian Action Plan for Brain Health.