par CDKL5 Canada
CDKL5 Canada is a registered charitable organization dedicated to finding a cure for CDKL5 Deficiency Disorder. CDKL5 is a rare x-linked neurodevelopmental disorder. Most individuals with this disorder are affected with early-onset and difficult to control seizures. They have global delays, hyptonia, breathing difficulties, vision difficulties, sleep impairments, and many cannot walk or talk.
CDKL5 Canada is working hard to find treatments to improve the quality of life for these children, to Wwprovide hope and support to families, and to ultimately find a cure. By participating in this walk, you are creating awareness for this devastating disease as well as raising much needed funding for research. If you are not able to participate in the walk, donations are appreciated.
This is a family friendly event which is taking place on Saturday, October 6th at the Bayview Park Pavilion in Thornbury. Come early to check in and pick up your swag bag (for the first 200 registered) beginning at 11am. There will be face painting for the kids, you can purchase raffle tickets for the draw, and enjoy live entertainment by The Dust Jackets. We will have opening remarks at 12pm followed by the fun walk.
Once we are back at the Pavilion, we will enjoy a BBQ lunch, announce raffle prize winners, and are honored to have a Canadian CDKL5 researcher, Dr. Jim Eubanks speak. He will discuss the research he is doing, as well as research that is being done around the world, and will be available for questions.
We hope that you will support us and bring hope to Canadian CDKL5 families.