Coast to Coast for CDKL5 

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Three Years of Walking Together.
One Shared Purpose.

Since launching in 2024, Coast to Coast for CDKL5 has brought us together each June to support families affected by CDKL5 Deficiency Disorder (CDD).

Over the past three years, hundreds of participants from across the country and world have walked millions of steps, raised vital funds for research and family support, and built an incredible community united by hope.

As we prepare for our fourth annual Coast to Coast for CDKL5, registration will open in May 2027—and we’d love for you to join us.

Walk Across Canada

Together, participants virtually travel the distance from St. John’s, Newfoundland, to Victoria, British Columbia, one step at a time. Every walk, every wheelchair push, every stroll with family, and every step taken in support of someone living with CDKL5 helps move our community forward.

Whether you’re participating on your own, with your family, friends, workplace, or school, every step makes a difference.

Why we walk

CDKL5 Deficiency Disorder is a rare genetic condition that causes difficult to control epilepsy, severe developmental delays and lifelong complex medical needs. Funds raised through Coast to Coast for CDKL5 help CDKL5 Canada support research that brings us closer to better treatments.

How it works

 Throughout the month of June, participants:

  • Register individually or as part of a team.
  • Raise funds to support CDKL5 Canada.
  • Track their steps using a fitness device.
  • Celebrate milestones as we journey virtually across Canada together.
  • Participate in fun challenges and social media contests.

No minimum step goal is required—everyone is welcome, and every contribution matters.

Join us next June for Year Four! 

Our community has already accomplished so much in just three years, and we’re only getting started.

Registration for our fourth annual Coast to Coast for CDKL5 opens in May 2027.

We hope you’ll join us as we continue walking for awareness, research, and hope—because every step brings us closer to a brighter future for individuals and families living with CDKL5. 


CLICK HERE FOR MORE Instructions ON HOW to register for Coast to Coast for CDKL5

more days until we start walking Coast to Coast for CDKL5!