We want to thank everyone for the participation in our Move CDKl5 Forward awareness event! Watching our community untie and engage to spread awareness, share their stories, host events, and raise funds for the IFCR is inspiring to all of us.
Let's keep going and finish strong! Please continue sending out messages on your social channels and keep tracking your miles!
What is Move CDKL5 Forward? It is a month-long virtual movement, awareness, and fundraising event. A time for our CDKL5 Community to rally together to spread awareness for CDKL5 Deficiency Disorder and to raise needed funds for the IFCR.
We are so excited to be planning family meet-ups again this year! We want to thank our generous sponsors for making this possible without the use of any hard-earned fundraising dollars! We also want to thank our host families who are putting these together. We are still finalizing details on some of these, but full information will be sent to all who register. Each meet up will include time for fun, socializing, and good food to eat!
Click the link below to learn more and register for meet-ups in California, Colorado, Florida, Georgia, Ohio, and Texas.
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. These range from clinical trial opportunities for medications to observational studies designed to advance knowledge and treatments for CDKL5 Disorders.
