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CDKL5 in Color @cdkl5incolor.bsky.social · 3d

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

CDKL5 in Color @cdkl5incolor.bsky.social · 10d

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

CDKL5 Life Expectancy

CDKL5 life expectancy is the most commonly searched term

cdkl5incolor.blogspot.com

CDKL5 in Color @cdkl5incolor.bsky.social · 21d

✨ 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...

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

CDKL5 in Color @cdkl5incolor.bsky.social · Jul 28

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

Reposted by CDKL5 in Color

Marissa @anothermarissa.bsky.social · Jul 15

🙌 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 · Jul 10

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 · Jun 23

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

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CDKL5 in Color @cdkl5incolor.bsky.social · Jun 21

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

CDKL5 in Color @cdkl5incolor.bsky.social · Jun 17

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 · Jun 5

🙌 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...

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

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CDKL5 in Color @cdkl5incolor.bsky.social · Jun 2

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

Get to Know CDKL5 Deficiency Disorder

YouTube video by CDKL5 in Color

youtu.be

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CDKL5 in Color @cdkl5incolor.bsky.social · May 23

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

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CDKL5 in Color @cdkl5incolor.bsky.social · May 13

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

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CDKL5 in Color @cdkl5incolor.bsky.social · May 11

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

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CDKL5 in Color @cdkl5incolor.bsky.social · May 3

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

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CDKL5 in Color @cdkl5incolor.bsky.social · Apr 20

✨🎙️ 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...

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

CDKL5 in Color · Episode

open.spotify.com

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CDKL5 in Color @cdkl5incolor.bsky.social · Apr 4

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

So, What Are You Wearing?

CDKL5 in Color · Episode

open.spotify.com

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CDKL5 in Color @cdkl5incolor.bsky.social · Mar 31

✨ 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...

Hey !

preview.mailerlite.io

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CDKL5 in Color @cdkl5incolor.bsky.social · Mar 29

✨🎙 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

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...

www.cdkl5incolor.com

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CDKL5 in Color @cdkl5incolor.bsky.social · Mar 15

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

Oguz Kanca @okanca.bsky.social · Mar 14

We are excited to share our latest paper published today linking specific variants in CDKL2 and CDKL1 to a novel neurodevelopmental disorder.
www.bcm.edu/news/new-cdk...

New CDKL genes linked to neurodevelopmental disorders

CDKL5, one of the five members of the CDKL family of genes, is important for proper neurodevelopment and associated with seizures. However, the role the...

www.bcm.edu

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CDKL5 in Color @cdkl5incolor.bsky.social · Mar 15

New podcast episode it out! Sharing #CDKL5 stories, this time with Heather and Ezra!

spotifycreators-web.app.link/e/eGn59VmrwRb

Heather's Life with Ezra (age 3) by CDKL5 in Color

Episode 11: Heather’s Life with Ezra (age 3)If you are in the early years of parenthood, you can probably relate to Heather. Mom of two littles, one with CDKL5, plus she and her husband are working fu...

spotifycreators-web.app.link

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CDKL5 in Color @cdkl5incolor.bsky.social · Mar 7

New podcast episode is out! We are talking #CDKL5 and hospitalizations. Have a listen on Spotify and Apple Podcasts!
creators.spotify.com/pod/show/mar...

Let's Talk About Being Hospitalized by CDKL5 in Color

No one likes being in the hospital, but when your child has a diagnosis of CDKL5 Deficiency Disorder, hospitalizations are a part of life. Some of the most challenging hospitalizations are for respira...

creators.spotify.com

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CDKL5 in Color @cdkl5incolor.bsky.social · Feb 24

Link to participate: everylifefoundation.org/rare-advocat...

🚨 Ready to take action? View the RDLA Action Alert Center for ways to make your voice heard: everylifefoundation.quorum.us/actioncenter/

Thank you to EveryLife for their rare disease advocacy leadership!

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everylifefoundation.org

CDKL5 in Color @cdkl5incolor.bsky.social · Feb 24

You can participate virtually!

▪ Feb 24 - Rare Reels Documentaries
▪ Feb 25 - Legislative Conference Live Stream (9:00-5:00)
▪ Feb 26 - Rare Disease Congressional Congress Briefing (9:00-10:00)

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CDKL5 in Color @cdkl5incolor.bsky.social · Feb 24

🦓 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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