Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.


The Little Green Dress

Imagine the journey you have been on with your angel from the beginning. A journey of uncertainty, appointments, medical professionals some you have never heard of and some you wish to never hear of again! Equipment that you never dreamed of and drugs you can now spell, calculate, and compare in your sleep. Familiar right! Now imagine doing that alone! Along with receiving this dreaded diagnosis is some comfort and support in the guise of our new family….our CDKL5 Family from around the world. We can now connect in a way like never before, offer advice, support and love throughout the world and feel less alone in our CDKL5 journey.

But why stop there! The Little Green Dress Project is support you can actually touch! In a joint effort between the IFCR and CDKL5 UK, one dress is on an emotional journey across the globe, visiting all our CDKL5 families. It is passed from one angel to another symbolizing our journey together and uniting us as one loving family.

The dress left Somerset, England in the summer of 2011 and is currently working its way across the globe. The dress travels with a card each for our girls and boys (that’s right…even boys can enjoy this project!). On its way to its next adventure, the dress and its box contents include a personal card from the last recipient to the next with a message of hope and love with a small gift. A photograph is then taken of the child and the dress and placed in the box to start its journey onwards again. Its final destination back to Somerset will reveal a bounty of beautiful pictures of our angels united by the Little Green Dress which will then be put on a disk and, hopefully, a book which will generate much needed funds for vital CDKL5 research.

If you have not signed up for the Little Green Dress Project, it is not too late. You can send an email to to be added to the list.

“For me the dress helped me to feel a part of something bigger than our own little CDKL5 bubble. We are connected in a way like never before no longer isolated but together! United in our children and travelling these journeys very much together just like our little green dress! The future is brighter and the future is green! Hope, Love, Cure.”

Sarah Skillicorn
Mum to Gracie – a CDKL5 Angel