Our latest episode is out! We welcomed Aditi from the UK on the pod to share her experiences raising a daughter with #CDKL5! Have a listen on Spotify, Apple Podcasts, and YouTube!

Hew episode is out and it's a good one! #CDKL5 open.spotify.com/episode/3usU...

Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg

New episode of the podcast is out! Listen on Spotify, Apple Podcasts, & YouTube! #CDKL5 open.spotify.com/episode/7vbY...

Episode 33: Let’s Talk About Tube Feeding

✨🎙 New: Episode 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 to take in all that they need to be well nourished or to maintain their growth curve. open.spotify.com/episode/5FaZ...

Episode 31: Let’s Ring Out 2025

Happy New Year! New episode of the #CDKL5 in Color podcast drops on Saturday! Catch up on any you have missed so far! open.spotify.com/show/4oxNoHl...

CDKL5 in Color News!

✨ It's here! Our quarterly newsletter is in your inbox!

Didn't get a chance to subscribe? Read it here (and hit that subscribe button!): preview.mailerlite.io/preview/1263...

ICCRN work in print! Many thanks to the #CDKL5 families who have participated with these wonderful researchers!

Episode 30: Kara’s Life with Bennett (age 9)

New episode is out! Meet Kara and her 9 year old, Bennett! #CDKL5 open.spotify.com/episode/4PVX...

Excited to share our new preprint in @biorxiv-neursci.bsky.social

"Cyclin-dependent kinase-like 5 (CDKL5) binds to talin and is anchored at the postsynaptic density via direct interaction with PDZ domains"

Instead of a 🧵 the paper is summarised in this video.

www.biorxiv.org/content/10.1...

Episode 28: Understanding CDKL5 Deficiency Disorder

November is Epilepsy Awareness Month and we are discussing a resource we have available on our website called "Understanding CDKL5 Deficiency Disorder." Epilepsy is a main symptom of CDD. Check it out & listen! open.spotify.com/episode/6ZdB...

Episode 27: CDKL5 Science Chat with Ben Goult

New episode on the CDKL5 in Color podcast and it's a science one! Let us know what you think! open.spotify.com/episode/5Lkx...

Hew episode is out! #CDKL5 spotifycreators-web.app.link/e/SZQnK55zaXb

✨ New Blog Post cdkl5incolor.blogspot.com/2025/09/cdkl...

CDKL5 Knowledge Assessment We are partnering with the American Society of Gene & Cell Therapy (ASGCT) on educational content for our CDKL5 community. You can help us prepare by taking this short quiz. Don't worry, your score do...

✨ We are collaborating on a project with ASGCT - American Society of Gene & Cell Therapy. Help by sharing your understanding of gene therapy and drug development in this short quiz. Do it by Sept 30 and be eligible to win a $25 Amazon gift certificate!

➡ Link: forms.gle/LBPKfyHexrDw...

Want to hear #CDKL5 stories? Listen to the CDKL5 in Color podcast for free on Spotify, Apple Podcasts, & YouTube!

🙌 June was HUGE for @cdkl5incolor.bsky.social

We increased our following by:
🔹 31% on Facebook
🔹 45% on Instagram
🔹 83% for our newsletter

Our June awareness month podcast episodes are available for free on Spotify, Apple Podcasts, and YouTube! Check them out!

We are taking a summer break from releasing new episodes. See you in September for more #CDKL5 stories! Be sure to catch up on any episodes you have missed while we are away!

Episode 21: How has this diagnosis changed you? CDKL5 in Color · Episode

June is #CDKL5 awareness month and today we released episode 4 of 5 in our special series! Have a listen: open.spotify.com/episode/0vrI...

CDKL5 in Color Podcast · Marissa Bishop · 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 Disorde...

Have you listened to any of our June #CDKL5 awareness month episodes yet? They are the green ones! Have a listen for free on Spotify open.spotify.com/show/4oxNoHl...

Today is World #CDKL5 Day and we invite you to pick an episode of the CDKL5 in Color podcast and have a listen. Learn from our community. We are here, waiting on a healthier future for our children. www.cdkl5incolor.com

From isolation to connection: One rare caregiver's passion to build community When Marissa Bishop’s vision of the future changed with her son’s rare disease diagnosis, she discovered very quickly the importance of community and finding ‘your people’. She discusses the support s...

🙌 Our co-host, Marissa, had an article published with RARE Revolution Magazine entitled "From isolation to connection: One rare caregiver's passion to build community."

➡ Check it out here: rarerevolutionmagazine.com/from-isolati...

Get to Know CDKL5 Deficiency Disorder YouTube video by CDKL5 in Color

June is #CDKL5 awareness month! youtu.be/yujrZPijW2c?...

Episode 17: Ed’s Life With Haley (age 18) CDKL5 in Color · Episode

Grandparents are special people. Listen to us chat about our children's grandparent relationships and get to know Ed, CDKL5 grandfather to 18-year-old Haley! open.spotify.com/episode/76HZ...

Hey !

We are working on our next quarterly newsletter all about #CDKL5 awareness month (June)! Did you read our first newsletter? Check it out here: preview.mailerlite.io/preview/1263...

Episode 16: Let’s Talk About Acceptance CDKL5 in Color · Episode

New podcast episode is out and we are talking about acceptance. Happy Mother's Day to all our fellow #CDKL5 mamas - you make a difference every single day. open.spotify.com/episode/1xG5...

Episode 15: Renee’s Life with Owen (age 5) CDKL5 in Color · Episode

New episode is out! We are so happy to welcome #CDKL5 mama, Renee, into the studio to talk about life with her 5 year old son, Owen. open.spotify.com/episode/00be...

Episode 14: Carol-Anne’s Life with Amber (age 20) CDKL5 in Color · Episode

✨🎙️ New podcast episode is out and we are SO excited to have Carol-Anne from CDKL5 UK in the studio talking about life with her soon-to-be twenty-year-old daughter, Amber!
open.spotify.com/episode/5tpG...

So, What Are You Wearing? CDKL5 in Color · Episode

🎙️ New podcast episode is out!! #CDKL5 open.spotify.com/episode/3P6d...

Hey !

✨ It's here! Our first quarterly newsletter is in your inbox!

Didn't get a chance to subscribe? Read it here: preview.mailerlite.io/preview/1263...

Newsletter Sign Up CDKL5 in Color Respects Your Privacy We collect personal information from users who want to be a guest and/or subscribe to our newsletter, such as their name and email address. This data is used to se...

✨🎙 New podcast episode is out! We reflect on how it’s been going for us at the CDKL5 in Color podcast and what people can expect in our upcoming (first!) newsletter!

Sign up so you get all the info right to your inbox: www.cdkl5incolor.com/newsletter-s...

🎧 Listen on Spotify or Apple Podcasts