The CDKL5 Connection

International Foundation for CDKL5 Research

The CDKL5 Connection is the official podcast of the International Foundation for CDKL5 Research (IFCR)—a welcoming space where science, care, and community come together. Hosted primarily by Dr. Raj Rajaraman, a clinician, researcher, and long-time partner of the CDKL5 community, the podcast brings together the voices, questions, and experiences that matter most to individuals and families affected by CDKL5 Deficiency Disorder. From conversations with families and caregivers to insights from clinicians, researchers, advocates, and community leaders, each episode is designed to inform, encourage, and help our community feel more connected. Through the recurring Ask Dr. Raj segment, listeners are invited to submit questions and hear thoughtful, accessible perspectives on topics that matter in daily life with CDKL5. You’ll also hear from special guest hosts, expert contributors, and IFCR leadership as they share updates on research, advocacy, family support, educational opportunities, and the progress being made together. Wherever you are in your CDKL5 journey, The CDKL5 Connection is here to help you learn, feel supported, and stay connected. DisclaimerDr. Rajaraman is speaking on behalf of himself as an individual and not on behalf of UCLA. This podcast is for informational purposes only and is not intended as formal medical advice. The information provided is based on available research and expert opinion, but medical knowledge evolves. It should not replace the advice of your own healthcare provider.

Episodes

  1. 5d ago

    Episode 2: Infantile Spasms

    What do infantile spasms look like, and why can they be difficult to recognize in children with CDKL5 deficiency disorder (CDD)? In this episode of The CDKL5 Connection, host Dr. Raj Rajaraman, director of the UCLA CDD Center of Excellence, explores this common seizure type and the unmet need for more effective treatments. Dr. Raj explains how spasms can occur alongside or immediately after other seizure types, why they may go unrecognized, and how videos, EEGs, and conversations with your child’s care team can help identify them. He also discusses research on treatment response in CDD, the challenges of maintaining spasm control, and options families may discuss with their neurologists when initial treatments aren’t enough. This episode offers families a closer look at recognizing changes in seizures, communicating concerns, and understanding why continued research matters. Content note: This episode includes a video of a child experiencing seizures, which some viewers may find distressing. Have a question for Dr. Raj or a topic you’d like covered? Submit an “Ask Dr. Raj” request at cdkl5.com/podcast. Disclaimer: Dr. Rajaraman is speaking on behalf of himself as an individual and not on behalf of UCLA. This podcast is for informational purposes only and is not intended as formal medical advice. The information provided is based on available research and expert opinion, but medical knowledge evolves. It should not replace the advice of your own healthcare provider.

Ratings & Reviews

5
out of 5
5 Ratings

About

The CDKL5 Connection is the official podcast of the International Foundation for CDKL5 Research (IFCR)—a welcoming space where science, care, and community come together. Hosted primarily by Dr. Raj Rajaraman, a clinician, researcher, and long-time partner of the CDKL5 community, the podcast brings together the voices, questions, and experiences that matter most to individuals and families affected by CDKL5 Deficiency Disorder. From conversations with families and caregivers to insights from clinicians, researchers, advocates, and community leaders, each episode is designed to inform, encourage, and help our community feel more connected. Through the recurring Ask Dr. Raj segment, listeners are invited to submit questions and hear thoughtful, accessible perspectives on topics that matter in daily life with CDKL5. You’ll also hear from special guest hosts, expert contributors, and IFCR leadership as they share updates on research, advocacy, family support, educational opportunities, and the progress being made together. Wherever you are in your CDKL5 journey, The CDKL5 Connection is here to help you learn, feel supported, and stay connected. DisclaimerDr. Rajaraman is speaking on behalf of himself as an individual and not on behalf of UCLA. This podcast is for informational purposes only and is not intended as formal medical advice. The information provided is based on available research and expert opinion, but medical knowledge evolves. It should not replace the advice of your own healthcare provider.

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