In the latest episode of UCB’s Raring to Listen, hear from Karen Utley, President and Co-founder of the CDKL5 - IFCR, who cares for her daughter living with #CDKL5 .

It's #NationalSiblingsDay and we are celebrating our #CDKL5 VIP siblings! These rare epilepsy sibs are often unselfish and dedicated. They can see past challenges, exhibiting compassion beyond their years. Learn about the VIP Sibling program:
cdkl5.com/blog/vip-sibli…

👋 Hi! We want to hear from you! You can get in touch with us in a variety of ways about all things #CDKL5 . We will get back to you asap!

📣Are you active on social media and interested in helping the IFCR to amplify our message? Join our IFCR Superfan Club!   

No meetings. Just periodic informative emails so that you can help us spread the word!   

Fill out the form to be added! forms.gle/eWk1qqtPs3mxNz…

🎬Did you know that the IFCR is on YouTube? Subscribe to our channel and see videos from #CDKL5 experts about a variety of topics relevant to life with CDKL5!    

youtube.com/internationalf…

Does someone important in your life have #CDKL5 deficiency disorder? Looking for ways to help? Check out some ideas on our website - cdkl5.com/get-involved/

💚Family Support Representatives (FSRs) offer #CDKL5 families emotional support and understanding. We truly understand the journey and we want to be here for you along your path.    

➡ Comment below or visit our website - cdkl5.com/support

The IFCR is here to help. We’ve created parent guides for many aspects of life with #CDKL5 deficiency disorder. Some are available in multiple languages!  

Find the guides in our Resource Library: cdkl5.com/resource-libra…

📣Early-bird registration is DUE APRIL 1!

We hope you will join us for our 6th International #CDKL5 Family Education and Awareness Conference!

When: June 13-15, 2024
Where: Cleveland (Akron), Ohio

Learn more about our event: cdkl5.com/conference

In 2009, we incorporated as a non-profit organization. Since then, we have funded ground-breaking research and established #CDKL5 Centers of Excellence across the USA all while supporting families to live their best lives with this diagnosis. 

Learn more: cdkl5.com/about

🌍 The IFCR encourages all #CDKL5 parents to participate in “Connect CDKL5” no matter where they live in the world! Signing up is quick and easy!  

✨ When we band together, we are best able to advocate for our loved ones.  

Sign up on our website - cdkl5.com/connect-cdkl5

👋Get to know the ICCRN!   

The ICCRN seeks to improve the health and quality of life for individuals and families living with CDKL5 Deficiency Disorder (CDD) through collaborative clinical research.       

Want to make a difference for #CDKL5 ? Visit cdkl5researchnetwork.org