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 jakobrcdkl5@gmail.com for further information 🙂
Join our Facebook Group: http://www.facebook.com/groups/344338084382072
Join our Instagram Account: http://www.instagram.com/jakobruestcdkl5
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. http://www.canadahelps.org/en/dn/73875?v1=true
Merch Gallery: https://photos.app.goo.gl/J5bHB3rgiQScPvjz8
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 https://photos.app.goo.gl/otKtMuN8ytWAFzyr7
Written by CDKL5 Canada on October 20, 2023 “It’s Feel Good Friday! Please join us in celebrating Jakob Ruest and his aunt Ashley Tremblay. 
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!”
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:
- October 2024
- January 2024 https://mailchi.mp/b0dfb420eb8b/cdkl5-canada-6263674
- July 2023 https://us11.campaign-archive.com/?u=fc0988d41adccaceb5eabfed3&id=8a0d8aa5e3
- April 2023 (Family Spotlight – Jakob’s Story) https://mailchi.mp/70cdc0834f07/cdkl5-canada-6229426
- December 2022 https://mailchi.mp/aa1a4a968966/cdkl5-canada-6217358
- January 2022 https://mailchi.mp/cd6ad5a65bd0/cdkl5-canada-4858558
Our Awareness Campaign has been featured in local newspapers:
- June 2023 – The Kitchissippi (page 39) https://issuu.com/greatrivermedia/docs/kitchissippi_times_june_2023/1?ff&experiment=last-page&fbclid=IwAR2PkbLqTXK4lt2cTYwd82dFtpSvz_iK8FWPU3M3oxPpndErr07qkP5OAK8
- June 2023 – The Vistas (page 39) http://): https://vistas-news.ca/wp-content/uploads/2023/05/VISTAS-JUNE-2023_40pgs_web.pdf?fbclid=IwAR1vy_fUR_ye75DfJtVXnUoZ5zUysy96YcxDC2cT86TeO52gpVWLfb5hE3M
- April 2023 – The Mainstreeter (page 37) https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:10c273c7-ee6b-4f2a-b5e0-1237e0240489
- April 2023 – The Oscar (page 29) https://oldottawasouth.ca/archives/2023/3895-2023-04-april/file?fbclid=IwAR3t2h0cwHZxRNpl8PpUldX6xfNDla-g6czxk-HFdRk-WiK-JSJMeUUPmTs
- March 2023 – Manor Park Chronicle https://manorparkchronicle.com/around-town-events-and-briefs-for-march-april-2023/?_thumbnail_id=2252&fbclid=IwAR0qG9WoF8nRH0J1cChcp_afzS-UgdKfXbIWadarCcdkIDV4yx_nMieYF_Q
- February 2023 – Vista News (page 39) https://vistas-news.ca/wp-content/uploads/2023/02/VISTAS-FEB-2023_40pgs_web.pdf
The Town of Arnprior Proclaimed February 28, 2023 to be “Rare Disease Day” https://www.arnprior.ca/en/news/proclamation-for-rare-disease-day-february-28th-2023.aspx
The Town of Arnprior Proclaimed CDKL5 Canada Awareness Days on June 17 and 18, 2022!