CDKL5 in Color

Our first episode is live! Wahoo! There is definitely a bit of a learning curve to this podcasting thing, but now that we have our first recording under our belt I know it will just get better and better from here! In this episode we talk about why we started this podcast and why rare disease storytelling matters. I hope you’ll tune in and let us know what you think! Why start a CDKL5 podcast? CDKL5 in Color is a passion project that stems from us wanting to do more to amplify CDKL5 and to connect with other diagnosed families who might be looking for support out in the world of podcasts. Like other rare diseases, you’re not going to just bump into someone in the store who knows CDKL5 or find people by chance. You really need to seek out members of this CDKL5 community for that connection. We hope our podcast provides an avenue to do that. Why is storytelling important for advocacy? The heart of why we advocate is because we need things to change. But how do people help you when they d...

Hello! So glad you’re here! I’m Marissa, co-host of the CDKL5 in Color podcast (with my CDKL5 partner-in-crime, Amanda) and content creator for all things CDKL5 in Color. Chances are you found us because someone you love has a diagnosis of CDKL5 deficiency disorder. But maybe you are facing a different rare epilepsy that has symptoms in common with CDKL5. Or perhaps you work in rare disease in some way. However you found us, welcome! CDKL5 in Color is truly a passion project that has been in the works for a while now, and we are so excited to finally see it come to life! On the podcast you’ll hear Amanda and me share lessons learned along the way as parent caregivers to children living with CDKL5 deficiency disorder in a variety of topic-based candid chats. You’ll also get to know members of our CDKL5 community through interview episodes that are sure to leave you feeling informed, inspired, and connected. We are channeling over 25 years of CDKL5 caregiving and advocacy into powerful s...