Awareness Campaign

We welcome you to join us in our CDKL5 Awareness Campaign by spreading the word about CDKL5 to one day, find a cure!

We are kicking off our 2024 Awareness Campaign Solicitation. We have many options available for you/your organization can participate. We are hoping to reach a goal of $10,000 in donations for 2024. Please reach out to us via email to for further information πŸ™‚

Join our Facebook Group:

Join our Instagram Account:

We welcome you to join Jakob’s Memorial Fundraiser for CDKL5 Canada by making a one-time or monthly or annual donation. Please select “Hope4CDKL5Fund” from the “fund” drop down box.

Merch Gallery:

On October 28, 2023 we had a Clothing Merch Photoshoot. We invite you to click on the following link to view our clothing merch options

“It’s Feel Good Friday! Please join us in celebrating Jakob Ruest and his aunt Ashley Tremblay. πŸ’š

Ashley is Aunt to Jakob, who passed away from CDD when he was three years old. With the support of his parents, Ashley started a fundraising and awareness campaign in his memory two years ago. Her ongoing fundraising efforts have just surpassed $10,000!

In addition to fundraising, she has made significant strides to raise awareness in Ottawa including having June proclaimed as CDKL5 Awareness Day in their hometown of Arnprior, Ontario and February 28th proclaimed as Rare Disease Day, and having the Ottawa sign illuminated in June 17th!” Written by CDKL5 Canada on October 20, 2023

October Challenge: Pumpkin carved by Ashley and Jax Tremblay!!

On June 17, 2023 a small group of us gathered at the OTTAWA Sign in support of CDKL5 Awareness Day!! Hoping to see everyone in 2024 xoxo

CDKL5 Canada issues a newsletter every three months and our Awareness Campaign has been featured in:

Our Awareness Campaign has been featured in local newspapers:

The Town of Arnprior Proclaimed February 28, 2023 to be “Rare Disease Day”

The Town of Arnprior Proclaimed CDKL5 Canada Awareness Days on June 17 and 18, 2022!