We hosted our AGM on Tuesday, August 27th at 7pm EST. Please see below the letter from the President and links to the committee reports.

Dear Members,

We want to thank you for your continued support of our organization. This was a tremendous year of growth and participation on our board. We had some new board members who really spread their wings this year and I am so proud of the results that our group was able to achieve.

We hosted a new fundraising event called Coast to Coast for CDKL5 Canada in June this year. The results were incredible with over 600 participants, 16 teams representing CDKL5 families from across the country, and raising over $47,000! Thank you to everyone who fundraised and to those who made donations. We can’t do this without you!

We also had an increase in the number of prominent landmarks which were illuminated to mark CDKL5 Awareness Day on June 17th. These landmarks included the Vancouver Convention Centre, the City of Nanaimo Bastion, the Calgary Tower, the Winnipeg Sign, the Esplanade Riel Bridge, the CN Tower, Niagara Falls, the Peace Bridge,  the Toronto Sign, the Clock Tower in Collingwood, the Ottawa Sign, the Province House Legislature Building in NS, and the Confederation Building in NL. This is a significant show of support in Canada and it is unprecedented in our global community.

This year we started a new Hospital Outreach initiative which aimed at connecting with paediatric neurologists and geneticists at children’s hospitals across the country. The goal was to make contact and introduce them to our organization, and to provide them with resources and information so they can provide better support to CDKL5 families. We are now successfully connected to 8 children’s hospitals across the country and we will continue to make them aware of new research, clinical trial opportunities, and resources for their families. 

In line with supporting families, we also updated our Family Handbook, continued our quarterly newsletter Rare Reality, and we have been successful at raising our public profile through a consistent social media presence. 

Finally, we are making use of our fundraising efforts and have just signed off on a two year extension to Dr. Eubanks’ grant. His lab will receive $116,000 to continue their exciting CDKL5 research, and we look forward to some of their work being published this year so we can share it with you.

Once again thank you for your support. We are looking forward to a brighter future for our children with CDKL5 Deficiency Disorder.

Sincerely,

Natalie Ladly
CDKL5 Canada President 

Please click here to view the Fundraising Report submitted by Jill Copithorne

Please click here to view the Social Media Report submitted by Ange Maisano