While many have never heard of CDKL5, it’s one of the most common forms of genetic epilepsy, with an estimated occurrence of ~1:40,000-60,000 live births. This developmental epileptic encephalopathy manifests in an array of clinical symptoms and varies in severity. Early-onset epilepsy and neurodevelopmental delays impacting visual function, speech, cognitive and motor are common with CDKL5.
To raise awareness of this genetic epilepsy, June has been named CDKL5 Awareness Month, with World CDKL5 Day occurring on June 17. This year help raise awareness of CDKL5 all month long. From participating in their Move CDKL5 Forward fundraising event to posting on social media, there are many ways you can join the cause.
Participate in Move CDKL5 Forward
Move CDKL5 Forward, now in its 3rd year, is a fundraising and awareness event that encourages people to get out all month long and move, whether that’s walking, running, biking or any other activity. Last year 176 participants moved over 15,000 miles and raised funds for research and support programming.
Post on Social Media Using #CDKL5 and #CDKL5Awareness
One of the easiest and most effective ways to raise awareness of CDKL5 is by posting on social media. The International Foundation for CDKL5 Research encourages people to repost their social media content, and they also created a downloadable Awareness Packet for people to use. When you post, be sure to use the hashtags #CDKL5 and #CDKL5Awareness.
Get Together With Other Families Impacted by CDKL5
If you have a loved one who has been impacted by CDKL5, June is the perfect month to get to know other families like yours. Join online communities in your area to make connections and host gatherings to get to know one another.
Reach Out to Your Local Government and Request a Proclamation About CDKL5
One of the best ways to bring attention to CDKL5 is by getting a proclamation — an official designation of an event. The International Foundation for CDKL5 Research provides the steps on how to request one. Their informational packet on how to request a proclamation also includes a sample letter you can use when contacting your local government.
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