CDKL5 in Color
by Marissa Bishop
Latest episode
Episode 48: Let’s Talk Feeding Tips & Tricks
Episode 48: Let’s Talk Feeding Tips & Tricks
About this podcast
On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights.
Our goal? To weave a tapestry of vibrant community stories.
Have a CDKL5 story to share? Get in touch!
Episodes
The newest 20 of 49 episodes
- Episode 48: Let’s Talk Feeding Tips & Tricks · 37 min · Episode 48Episode 48: Let’s Talk Feeding Tips & Tricks The show notes are packed for this one! Feeding difficulties are a common challenge for those living with CDKL5 Deficiency Disorder…
- Episode 47: Olivia’s Life with Emryn (age 3) · 39 min · Episode 47Episode 47: Olivia’s Life with Emryn (age 3) Life with CDKL5 is a family affair and Olivia knows that better than most! In this latest episode of the podcast, Olivia shares about…
- Episode 46: Let’s Talk About Respite · 30 min · Episode 46Episode 46: Let’s Talk About Respite It’s the number one unmet need that #CDKL5 caregivers have mentioned on our show, and we know exactly why. When your child needs 24/7…
- Episode 45: We’re Back for Season Three! · 31 min · Episode 45Episode 45: We’re Back for Season Three! The CDKL5 in Color podcast is back with new episodes! To kick off season three, join us as we catch up about our summer break, reflect…
- Episode 44: Exploring Caregiver Guilt (Part 3) · 24 min · Episode 44Episode 44: Exploring Caregiver Guilt (Part 3) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed…
- Episode 43: Exploring Caregiver Guilt (Part 2) · 34 min · Episode 43Episode 43: Exploring Caregiver Guilt (Part 2) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed…
- Episode 42: Exploring Caregiver Guilt (Part 1) · 29 min · Episode 42Episode 42: Exploring Caregiver Guilt (Part 1) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed…
- Episode 41: Michal’s Life with Natalia (age 5) · 29 min · Episode 41Episode 41: Michal’s Life with Natalia (age 5) There are families navigating a CDKL5 Deficiency Disorder diagnosis all over the world. What makes the diagnosis a little easier?…
- Episode 40: Let's Talk About Moments of Joy · 24 min · Episode 40Episode 40: Let's Talk About Moments of Joy Life with CDKL5 is filled with uncertainty, difficult decision-making, and sometimes heartbreak, but there are also moments of joy, so…
- Episode 39: Let’s Just Chat! · 29 min · Episode 39Episode 39: Let’s Just Chat! Sometimes it’s good just to chat. In this latest episode, we talk about what’s been on our minds of late. We talk about the ongoing challenges we…
- Episode 38: Aditi’s Life with Ria (age 6) · 36 min · Episode 38Episode 38: Aditi’s Life with Ria (age 6) Parenthood changes us, no question, but the adjustments we make when parenting a child with medical complexities and disabilities takes…
- Episode 37: Let’s Talk About Gene Therapy · 29 min · Episode 37Episode 37: Let’s Talk About Gene Therapy Gene therapy is on people’s minds, so let’s talk about it! What is known, what is unknown, and how are we meant to make sense of it all?…
- Episode 36: Let’s Talk About Bathing Our Kids · 29 min · Episode 36Episode 36: Let’s Talk About Bathing Our Kids Either love it or hate it (or somewhere in between), bathing our kids is part of life. For many families living with CDKL5…
- Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg · 33 min · Episode 35Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg How can AI impact the future of CDKL5 research? We tackle this topic and more with our guest, CDKL5 Dad and Cure5…
- Episode 34: Kim’s Life with LilyAnna (age 23) · 31 min · Episode 34Episode 34: Kim’s Life with LilyAnna (age 23) In our latest episode we welcome OG CDKL5 mama, Kim. She’s busy managing a large family in Arizona, which includes caregiving for…
- Episode 33: Let’s Talk About Tube Feeding · 33 minEpisode 33: Let’s Talk About Tube Feeding Adequate nutrition and hydration are the foundation of health. Unfortunately, it can be difficult for people living with CDKL5…
- Episode 32: Ali’s Life with Raegan (age 5) · 26 min · Episode 32Episode 32: Ali’s Life with Raegan (age 5) In this episode, we welcome Ali to the podcast to talk about life with her five-year-old daughter, Raegan. We touch on topics that all…
- Episode 31: Let’s Ring Out 2025 · 27 min · Episode 29Episode 31: Let’s Ring Out 2025 It’s been a great year for us at CDKL5 in Color! Thank you to all our listeners and supporters. YOU are the reason behind it all and we are…
- Episode 30: Kara’s Life with Bennett (age 9) · 38 min · Episode 30Episode 30: Kara’s Life with Bennett (age 9) In this episode you’ll meet Kara and her nine-year-old son, Bennett. Bennett is a middle child and his mom shares about the unique…
- Episode 29: Anna’s Life with Addy (age 4) · 39 min · Episode 29Episode 29: Anna’s Life with Addy (age 4) In this episode we welcome another sweetheart CDKL5 mama, Anna, on the podcast to talk about life with her four-year-old daughter, Addy…
