EVENT UPDATE: Wow!! We got to $60,000! Our CDKL5 community is STONG and MOTIVATED to find treatments for this rare disease! Don't forget to submit your miles for the month by July 5. Link is below. We have a goal of 5,000 miles moved - can we get there?!

EVENT UPDATE: Thanks to the incredible generosity of our CDKL5 community and their networks, we have exceeded our $50,000 goal! Can we get to $60,000?!

The IFCR is working hard to Move CDKL5 Forward and we need your help!

How it works:

-Make a donation right here on our page. How much? How about $30 for 30 days in June? Whatever amount you donate, large or small, please know we appreciate your generosity!

-Get out and MOVE during the month of June. If you'd like, keep track of your miles using our printable Mileage Tracker and at the end of the month submit your mileage using the form below.

Post your activities on social media with the hashtag #CDKL5Forward to help spread awareness! Check out these printable coloring pages!

We have a goal of 5,000 miles moved and $50,000 raised. We need your help!

Want to create a Team and lead your own fundraising effort for this event? It's easy! Find out what's involved in our Team Captain Guide. You'll create your own fundraising page right here!

Want Move CDKL5 Forward gear? Get your Bonfire event shirts HERE! *Please note shipping dates when you place your order, shirts are shipping into July now.

Finally, June is all about CDKL5 Awareness, so help us spread the word about CDKL5 by completing the activities on our CDKL5 Awareness Card! Have fun!

It will take all of us to Move CDKL5 Forward. Thank you for participating!

Submit your June miles here:

Mileage Submission Form (submit by July 5 for gift)

Check out all event info and more on our website at CDKL5.com!

HOPE | LOVE | CURE

About the IFCR: The mission of the IFCR is to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.

The IFCR is committed to funding research, both scientific and clinical, that will bring about treatments and, ultimately, a cure for CDKL5. We strive to raise awareness of this rare disorder within the medical and lay communities.

Above all, we seek to support all CDKL5 families and caregivers, whether newly diagnosed or well into adulthood, by providing the most current information on treatment advances and how to live their best life possible.