CDKL5 in Color
@cdkl5incolor.bsky.social
On the CDKL5 in Color podcast you'll hear lessons learned direct from parent caregivers of children living with #CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. www.CDKL5inColor.com
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CDKL5 in Color
@cdkl5incolor.bsky.social
· Jan 27
👋 Who else is here for CDKL5?? go.bsky.app/QEDPkZ4
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...
Episode 31: Let’s Ring Out 2025
open.spotify.com
January 14, 2026 at 4:27 PM
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...
✨ 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...
Didn't get a chance to subscribe? Read it here (and hit that subscribe button!): preview.mailerlite.io/preview/1263...
CDKL5 in Color News!
preview.mailerlite.io
December 11, 2025 at 8:12 PM
✨ 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...
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!
Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder Br&Beh
Beyond Seizures as an Outcome Measure: A Global Severity Scoring System for CDKL5 Deficiency Disorder
Brain and Behavior, Volume 15, Issue 11, November 2025.
dlvr.it
December 6, 2025 at 2:44 PM
ICCRN work in print! Many thanks to the #CDKL5 families who have participated with these wonderful researchers!
New episode is out! Meet Kara and her 9 year old, Bennett! #CDKL5 open.spotify.com/episode/4PVX...
Episode 30: Kara’s Life with Bennett (age 9)
open.spotify.com
December 6, 2025 at 2:43 PM
New episode is out! Meet Kara and her 9 year old, Bennett! #CDKL5 open.spotify.com/episode/4PVX...
Reposted by CDKL5 in Color
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...
"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...
August 28, 2025 at 10:25 AM
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...
"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...
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 28: Understanding CDKL5 Deficiency Disorder
open.spotify.com
November 1, 2025 at 3:30 PM
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...
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...
Episode 27: CDKL5 Science Chat with Ben Goult
open.spotify.com
October 25, 2025 at 3:04 PM
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
Episode 25: Let's Talk About AAC by CDKL5 in Color
Episode 25: Let’s Talk About AACWhile most people living with CDKL5 Deficiency Disorder are non-speaking, this does not mean they cannot communicate! AAC or Augmentative and Alternative Communication ...
spotifycreators-web.app.link
October 8, 2025 at 3:40 PM
Hew episode is out! #CDKL5 spotifycreators-web.app.link/e/SZQnK55zaXb
✨ New Blog Post cdkl5incolor.blogspot.com/2025/09/cdkl...
CDKL5 Life Expectancy
CDKL5 life expectancy is the most commonly searched term
cdkl5incolor.blogspot.com
October 1, 2025 at 1:28 PM
✨ New Blog Post cdkl5incolor.blogspot.com/2025/09/cdkl...
✨ 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...
➡ Link: forms.gle/LBPKfyHexrDw...
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...
forms.gle
September 19, 2025 at 8:59 PM
✨ 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...
➡ Link: forms.gle/LBPKfyHexrDw...
Reposted by CDKL5 in Color
🙌 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 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!
July 15, 2025 at 6:22 PM
🙌 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 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!
July 10, 2025 at 1:59 PM
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!
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...
Episode 21: How has this diagnosis changed you?
CDKL5 in Color · Episode
open.spotify.com
June 23, 2025 at 3:45 PM
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...
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...
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...
open.spotify.com
June 21, 2025 at 11:01 PM
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
June 17, 2025 at 10:43 PM
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
🙌 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...
➡ Check it out here: rarerevolutionmagazine.com/from-isolati...
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...
rarerevolutionmagazine.com
June 5, 2025 at 4:16 PM
🙌 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...
➡ Check it out here: rarerevolutionmagazine.com/from-isolati...
June is #CDKL5 awareness month! youtu.be/yujrZPijW2c?...
Get to Know CDKL5 Deficiency Disorder
YouTube video by CDKL5 in Color
youtu.be
June 2, 2025 at 11:56 AM
June is #CDKL5 awareness month! youtu.be/yujrZPijW2c?...
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...
Episode 17: Ed’s Life With Haley (age 18)
CDKL5 in Color · Episode
open.spotify.com
May 23, 2025 at 10:13 PM
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...
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...
Hey !
preview.mailerlite.io
May 13, 2025 at 6:40 PM
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...
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 16: Let’s Talk About Acceptance
CDKL5 in Color · Episode
open.spotify.com
May 11, 2025 at 5:26 PM
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...
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 15: Renee’s Life with Owen (age 5)
CDKL5 in Color · Episode
open.spotify.com
May 3, 2025 at 12:50 PM
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...
✨🎙️ 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/5tpG...
Episode 14: Carol-Anne’s Life with Amber (age 20)
CDKL5 in Color · Episode
open.spotify.com
April 20, 2025 at 5:46 PM
✨🎙️ 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/5tpG...
🎙️ New podcast episode is out!! #CDKL5 open.spotify.com/episode/3P6d...
So, What Are You Wearing?
CDKL5 in Color · Episode
open.spotify.com
April 4, 2025 at 3:57 PM
🎙️ New podcast episode is out!! #CDKL5 open.spotify.com/episode/3P6d...
✨ 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...
Didn't get a chance to subscribe? Read it here: preview.mailerlite.io/preview/1263...
Hey !
preview.mailerlite.io
March 31, 2025 at 2:33 PM
✨ 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...
Didn't get a chance to subscribe? Read it here: preview.mailerlite.io/preview/1263...