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June is CDKL5 Awareness Month

Let's shine a light on it!

CDKL5 Day ribbon 2023.png

Every June the CDKL5 community comes together to recognize CDKL5 disorder, and promote awareness efforts, research, collaboration  and fundraising.  


June 17 is International CDKL5 Day, in memory of Glyn Boltwood, whose life and legacy was directly responsible for the medical and scientific community discovering CDKL5 Disorder in 2004.

Lime green is the official ribbon and color for CDKL5 awareness.  There are many ways that you can show your support and participate in raising awareness in your communities, schools, businesses, cities, states, countries, and more.

  • There are many places that can light up green for the month of June, and with some creativity on your part, you can make a big impact.

    • Change the lightbulbs on your front porch to green (ask friends and neighbors to do the same!)

    • Ask your city or community to light up a clocktower or landmark with green floodlights.

  • Enlist your workplace or schools to acknowledge CDKL5 month and day with special activities, a newsletter mention, fundraisers, etc.

  • give radio and newspaper interviews

  • post a blog, post on Twitter, Facebook and other social media

  • meet up with other CDKL5 parents for a get-together

  • Write to your local officials, state and federal government to obtain proclamations that June 17 is International CDKL5 Day, or that June is CDKL5 Awareness Month

  • the possibilities are endless...

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