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CDKL5 in Color @cdkl5incolor.bsky.social · 8h

Are you following us on Facebook or Instagram? Go see today's post (Sept 30) for an opportunity to participate in a giveaway! Our #CDKL5 community embodies STRENGTH!

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CDKL5 in Color @cdkl5incolor.bsky.social · 25/09/2026

Our first episode of the season is live and the second drops tomorrow! It's a topic many #CDKL5 families talk about - the unmet need of respite. Hope you'll listen! Free on Spotify, Apple Podcasts, & YouTube!

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CDKL5 in Color @cdkl5incolor.bsky.social · 07/09/2026

Get ready for more #CDKL5 stories! The CDKL5 in Color podcast is back with new episodes starting Sept 12!

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CDKL5 in Color @cdkl5incolor.bsky.social · 15/06/2026

💚 Have you listened to our June three-part series called "Exploring Caregiver Guilt" yet? It's #CDKL5 awareness month! Listen for free on Spotify, Apple Podcasts, & YouTube. open.spotify.com/show/4oxNoHl...

open.spotify.com

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...

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CDKL5 in Color @cdkl5incolor.bsky.social · 01/06/2026

It's June and for #CDKL5 families around the world that means it's awareness month! We like to do something special on the podcast for June. This year, we are tackling a sensitive, but important topic - caregiver guilt. Listen for free on Spotify, Apple Podcasts, & YouTube!

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CDKL5 in Color @cdkl5incolor.bsky.social · 07/05/2026

Mother's Day weekend is upon us and we know it can be a difficult day for #CDKL5 caregivers. Our latest episode comes out on Saturday and is all about finding moments of joy. Hope you'll listen!

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CDKL5 in Color @cdkl5incolor.bsky.social · 15/04/2026

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!

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CDKL5 in Color @cdkl5incolor.bsky.social · 14/03/2026

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

open.spotify.com

Spotify – Web Player

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CDKL5 in Color @cdkl5incolor.bsky.social · 28/02/2026

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

open.spotify.com

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

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CDKL5 in Color @cdkl5incolor.bsky.social · 01/02/2026

✨🎙 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...

open.spotify.com

Episode 33: Let’s Talk About Tube Feeding

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CDKL5 in Color @cdkl5incolor.bsky.social · 14/01/2026

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...

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Episode 31: Let’s Ring Out 2025

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CDKL5 in Color @cdkl5incolor.bsky.social · 11/12/2025

✨ 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...

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CDKL5 in Color News!

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CDKL5 in Color @cdkl5incolor.bsky.social · 06/12/2025

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

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CDKL5 in Color @cdkl5incolor.bsky.social · 06/12/2025

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

open.spotify.com

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

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Reposted by CDKL5 in Color

Ben Goult @bengoult.bsky.social · 28/08/2025

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...

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CDKL5 in Color @cdkl5incolor.bsky.social · 01/11/2025

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...

open.spotify.com

Episode 28: Understanding CDKL5 Deficiency Disorder

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CDKL5 in Color @cdkl5incolor.bsky.social · 25/10/2025

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...

open.spotify.com

Episode 27: CDKL5 Science Chat with Ben Goult

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CDKL5 in Color @cdkl5incolor.bsky.social · 19/09/2025

✨ 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...

forms.gle

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...

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CDKL5 in Color @cdkl5incolor.bsky.social · 28/07/2025

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

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Reposted by CDKL5 in Color

Marissa @anothermarissa.bsky.social · 15/07/2025

🙌 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!

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CDKL5 in Color @cdkl5incolor.bsky.social · 10/07/2025

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!

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CDKL5 in Color @cdkl5incolor.bsky.social · 23/06/2025

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...

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Episode 21: How has this diagnosis changed you?

CDKL5 in Color · Episode

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CDKL5 in Color @cdkl5incolor.bsky.social · 17/06/2025

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

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CDKL5 in Color @cdkl5incolor.bsky.social · 23/05/2025

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...

open.spotify.com

Episode 17: Ed’s Life With Haley (age 18)

CDKL5 in Color · Episode

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CDKL5 in Color @cdkl5incolor.bsky.social · 13/05/2025

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...

preview.mailerlite.io

Hey !

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CDKL5 in Color @cdkl5incolor.bsky.social · 11/05/2025

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...

open.spotify.com

Episode 16: Let’s Talk About Acceptance

CDKL5 in Color · Episode

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CDKL5 in Color @cdkl5incolor.bsky.social · 03/05/2025

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...

open.spotify.com

Episode 15: Renee’s Life with Owen (age 5)

CDKL5 in Color · Episode

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CDKL5 in Color @cdkl5incolor.bsky.social · 20/04/2025

✨🎙️ 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...

open.spotify.com

Episode 14: Carol-Anne’s Life with Amber (age 20)

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CDKL5 in Color @cdkl5incolor.bsky.social · 31/03/2025

✨ 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...

preview.mailerlite.io

Hey !

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CDKL5 in Color @cdkl5incolor.bsky.social · 29/03/2025

✨🎙 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

cdkl5incolor.com

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...

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CDKL5 in Color @cdkl5incolor.bsky.social · 15/03/2025

"New CDKL genes linked to neurodevelopmental disorders" #CDKL5 #CDKL1 #CDKL2

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CDKL5 in Color @cdkl5incolor.bsky.social · 24/02/2025

🦓 Rare Disease Week on Capitol Hill is happening February 24-26, 2025. Hosted by the Rare Disease Legislative Advocates (RDLA), a program of @everylifeorg.bsky.social, this event empowers participants to learn key policies affecting the rare community & share their stories with Members of Congress.

Informational image saying What is rare disease week?

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Reposted by CDKL5 in Color

Marissa @anothermarissa.bsky.social · 20/02/2025

We are preparing for our first @cdkl5incolor.bsky.social quarterly newsletter to go out in March. Are you on our mailing list? www.cdkl5incolor.com/newsletter-s... #CDKL5

cdkl5incolor.com

Newsletter Sign Up

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CDKL5 in Color @cdkl5incolor.bsky.social · 19/02/2025

🥳 We are celebrating a milestone! 1,000 plays! Have you listened to the CDKL5 in Color podcast yet? Listen to Marissa @anothermarissa.bsky.social and Amanda @women-r-smarter.bsky.social talk all things #CDKL5 Deficiency Disorder! Available on Spotify and Apple Podcasts!

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CDKL5 in Color @cdkl5incolor.bsky.social · 18/02/2025

Episode 7 of the CDKL5 in Color podcast is out! Entitled "Advocacy, Rare Disease Day, & a Giveaway" we talk about rare disease advocacy and the impact getting involved can have on drug development and influencing the social systems our kids are a part of. Have a listen on Spotify or Apple Podcasts!

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CDKL5 in Color @cdkl5incolor.bsky.social · 27/01/2025

👋 Who else is here for CDKL5?? go.bsky.app/QEDPkZ4

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CDKL5 in Color @cdkl5incolor.bsky.social · 26/01/2025

Interested in #CDKL5? Check out the CDKL5 in Color podcast on Spotify & Apple Podcasts and visit our website!

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CDKL5 in Color @cdkl5incolor.bsky.social · 24/01/2025

✨🎙 New podcast episode is out and we are talking constipation! We delve into the challenges of managing constipation in #CDKL5 Deficiency Disorder. We share our stories and suggest practical tips that you can consider with your child’s doctor. 🎧 Spotify & Apple Podcasts

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CDKL5 in Color @cdkl5incolor.bsky.social · 12/01/2025

✨🎙️ Podcast episode 5 is out and we are SO excited to have Deshaun in the studio talking about life with #CDKL5 and her 15-year-old son, Braylon! She talks about the importance of mental health support and her positive attitude will make you smile. "We always celebrate the little things." -Deshaun

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CDKL5 in Color @cdkl5incolor.bsky.social · 08/01/2025

✨💻 New Blog Post! Before our kids were diagnosed with #CDKL5 Deficiency Disorder, they were diagnosed with epilepsy. In episode 4 of the CDKL5 in Color podcast we share our initial experiences receiving an epilepsy diagnosis for our infants. ➡️ www.cdkl5incolor.com/blog 🎧 Spotify or Apple Podcasts!

cdkl5incolor.com

Blog

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CDKL5 in Color @cdkl5incolor.bsky.social · 03/01/2025

✨🎙 New podcast episode is out! Before our kids were diagnosed with #CDKL5 Deficiency Disorder, they were diagnosed with epilepsy. In episode 4 of the CDKL5 in Color podcast we share our initial experiences receiving an epilepsy diagnosis for our infants. www.CDKL5inColor.com

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