We want to extend our deepest thanks and gratitude to each and every one of you who joined us for the Move CDKL5 Forward June Awareness and Fundraising Event, whether you moved, donated, fundraised, or simply cheered us on. Amazingly, we again met our fundraising goal!
Collectively we
Raised over $113,000 to advance CDKL5 research and support programs
Brought together 264 passionate participants from across the globe
Logged an inspiring 35,651 miles of movement in solidarity with the CDKL5 community
Our 2025 Family Meet Ups Kick Off This Saturday!
We are so excited for our Ohio event this Saturday, when we will be gathering for a day at the lake for some fun in the sun in Newton! Everyone that registered should have received a confirmation email and a group text for the event! Be sure to reply to take advantage of the adaptive adventure opportunities! Many thanks to Amy Castellini and family for helping organize this event!
Our Florida event will take place in Tampa on August 9th, and we are excited about our evening at the Museum of Science and Industry! Registration will close Sunday, August 3rd. We hope to see you there! Many thanks to Crystal Weber and family for helping organize this event!
The Colorado event is also coming up fast! This event will be August 16th at Top Golf in Thornton! There is still time register for this fun event! Many thanks to Paul Miller and family for organizing this!
There is still plenty of time to register for the Texas event, if you plan to stay the night and wish to take advantage of the reserved block of rooms, you need to reserve by August 15th. The link for room reservation is shared once you register for the Meet Up and mark yes for interest in the room. Morgan's Wonderland on September 13th will be a splashing good time!
Other future events include Lawrenceville, Georgia at CoolRay Field in September and Splitsville in Anaheim, California!
We want to thank our generous sponsors, Ultragenyx, Lundbeck/Longboard Pharmaceuticals, Praxis Precision Medicines, and UCB for making this possible without the use of any hard-earned fundraising dollars!
Save the Date for 2026 IFCR Educational Family Conference!
We are excited to share we have secured the location and dates for our biennial family conference!
The 2026 Conference will be in Philadelphia, Pennsylvania on June 18-20, 2026! We hope you will mark your calendars and start planning now to join us for this amazing event!
Research Opportunities!
Please visit our website at the link below to learn about current research opportunities. There are currently two clinical trial opportunities for new seizure medications related to Developmental and Epileptic Encephalopathies (DEEs), including CDKL5: The DEEp Ocean Study, sponsored by Lundbeck and The Emerald Study sponsored by Praxis Precision Medicines. There are also observational studies designed to advance knowledge and treatments for CDKL5 Disorders.
