CDKL5 June Awareness Month/Day

Do you know what the IFCR Starfish represents?

To us, this symbol reminds us to keep going and never give up.  The IFCR’s starfish symbol was inspired by The Star Thrower by Loren Eiseley and serves as a powerful reminder that we each have the power within ourselves to make a difference in the lives of others today. It is a refusal to accept failure and a reminder that by working together we can persevere against the odds.

June is CDKL5 Awareness Month and June 17th is Worldwide CDKL5 Awareness Day.

It will serve as a time for a global community to join together to bring awareness to CDKL5.  Raising awareness about the condition is vital to funding research that will provide treatments, and ultimately a cure for this devastating disorder.

CDKL5 Awareness Day (June 17th) honors Glyn’s Legacy and all those affected by CDKL5 Disorder

Thirteen years ago, Professor John Christodoulou led an Australian research team that studied the DNA of three children from the same family and found a common genetic abnormality occurring on a gene that would later become known as CDKL5. His research was published in the prestigious journal, The American Journal of Human Genetics 2004. Glyn was one of the three children at the focus of Dr. Christodoulou’s study. Glyn’s Legacy was in his DNA, which helped scientists to begin to identify what we now refer to as a CDKL5 Disorder. Unfortunately, Glyn passed on June 17, 1997, before his disease-causing gene was discovered, but his short life had an important impact on the children who have since been diagnosed with the same devastating disorder. Read more about Glyn’s Gift here.  IFCR urges families affected by CDKL5 to Inspire, Inform, and Initiate during June and on June 17th, in particular.


ACTIONS YOU CAN TAKE DURING
JUNE CDKL5 AWARENESS MONTH


Change your Facebook Profile Picture to the International CDKL5 Awareness Month icon for the month of June or on June 17th.


It’s time we spread the word and hold our 5 up high! #HANDSFORHOPE -tell as many people you can about CDKL5. After you tell them, take a picture of them holding up a hi-5. You can even take a “selfie” with that person both of you holding up a 5. If you are out to eat, tell your server about CDKL5 and take a picture of them holding up a 5! This can be done with anyone you meet! Post all your pictures directly to the IFCR page on Facebook, and let’s see how many people we can tell about CDKL5 and how many Hands for Hope are out there! Don’t limit yourself to one picture, tell as many people as you can!


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


Go green! Ask your neighborhood or local business to use green floodlights instead of their usual clear lights. Take pictures and ask Facebook friends to share the photos.


Make your neighbors aware with a yard sign that proudly proclaims “Someone We Love Has a CDKL5 Disorder“. IFCR is providing this free downloadable PDF file that can be printed at your local printer or office supply store.  Your family, friends, school, church, or your place of employment might also be willing to show their support.


If your employer has an established dress code at work, ask if they would consider a fundraiser where for $5 per person, employees can wear jeans and a green T-shirt to work on June 17th in honor of CDKL5 Awareness.


Commit to a meet-up day with other nearby CDKL5 families. Just having our kids at a restaurant or in public together spreads awareness, then let social media expand the audience. You can contact your family support representative for assistance.


Contact a local restaurant and ask them to help you host a fundraiser. Many owners are willing to designate a percentage of their profits on a given night to a specific charity.


Before school is out for summer, ask your child’s school to host a ‘Wear Green Day’


Sponsor an end of the school year celebration or picnic and raise awareness for CDKL5


Whatever you choose to do, we want to hear from you! Please tell us how you are spreading awareness and share your pictures with us. We will feature them on the IFCR’s Facebook page (if you haven’t ‘Liked’ our page yet, be sure to do that).