Being a Little More Aware of CDKL5 on Awareness Day!
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Being a Little More Aware of CDKL5 on Awareness Day!

June 17th is worldwide CDKL5 Awareness Day!
It’s our mission to give a spotlight to the rare diseases that don’t often get talked about – and especially on its awareness day!
So, what is CDKL5?
Well for starters, the full name is cyclin-dependent kinase-like 5, and it’s a rare genetic disorder that’s characterized by severe development impairment, as well as a variety of frequent seizures that start early in life.
Symptoms include:
  • Severe, constant seizures
  • Distinctive facial features, like a high and broad forehead, deep-set eyes, widely spaced teeth, full lips, large space between nose and lip, high palate, and small head
  • Significant developmental delay
  • Repetitive hand movements
  • Tendencies to look sideways and cross legs
Females are five times more likely to develop this disorder than males. However, males are usually more severely affected.
To read more about CDKL5, click here!
So what are some things we can do spread the word and honor those in the CDKL5 community? See below for some ideas, courtesy of the International Foundation for CDKL5 Research (IFCR)!
Use social media!
Change your social media profile picture to the International CDKL5 Awareness Month icon for the month of June or on June 17th! Easy enough, right?
Hashtag it out!

Participate in the #HANDSFORHOPE campaign! Tell as many people you can about CDKL5, and then take a picture of them holding up a hi-5. Post the pictures on the IFCR Facebook page, and let’s see how many people we can tell about CDKL5 and how many Hands for Hope are out there! This kind of a thing will get people talking and curious about CDKL5!

Put your local government to work!

This one’s for our more civics-minded readers! Seek a proclamation from your city’s mayor or state’s governor to proclaim June CDKL5 Awareness Month and/or June 17th CDKL5 Awareness Day.  See How to Request a Proclamation and view a Sample Proclamation Letter.

When in doubt, use a sign!

Sometimes, being literal helps! IFCR is providing this free downloadable PDF file that can be printed at your local printer or office supply store, which reads – “Someone We Love Has a CDKL5 Disorder“. So you can let the sign for the talking for you.

Any bit of effort we can do to raise awareness will help, so please consider any of the above or find your own way to honor those in the rare disease community!

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