Our Mission

To pursue research into finding a cure and treatments for CDKL5 disorder and to raise public awareness of the disorder, while providing support to those affected by CDKL5 in Canada.

What is CDKL5 disorder?

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neurodevelopmental impairment. Although CDKL5 affects mainly girls, we know boys can be affected as well. The epileptic disorder is the key feature to identify patients likely to present with a CDKL5 mutation.

Symptoms may include but are not limited to:

• Early-onset seizures - infantile spasms, West Syndrome, Lennox-Gastaut syndrome
• Cortical Visual Impairment
• Limited or no hand skills
• Eating and drinking challenges
• Limited or absent speech
• Hypotonia
• Curvature of the spine - scoliosis, kyphosis
• Impairment of sleep patterns
• Gastrointestinal difficulties - reflux, low gut motility, constipation. 

For details and a more complete list of symptoms please download our handbook - CDKL5 Disorder - A Guide for Parents at: www.cdkl5canada.ca.