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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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Reposted by Marissa

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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Marissa @anothermarissa.bsky.social · Jun 23

Listen! Like! Share!

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 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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Marissa @anothermarissa.bsky.social · Jun 10

Our quarterly newsletter is out! preview.mailerlite.io/emails/webvi...

Hey !

preview.mailerlite.io

Reposted by Marissa

New Zealand Herald (Unofficial) @nzherald.nzcow.com · Jun 5

📢 At 6 months old, Mila was diagnosed with CDKL5 deficiency disorder (CDD).

'I knew something wasn't right': Baby's journey to rare diagnosis after 30 seizures a day

www.nzherald.co.nz

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Reposted by Marissa

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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Marissa @anothermarissa.bsky.social · Jun 1

💚 June is #CDKL5 awareness month youtu.be/yujrZPijW2c

Get to Know CDKL5 Deficiency Disorder

YouTube video by CDKL5 in Color

youtu.be

Reposted by Marissa

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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Marissa @anothermarissa.bsky.social · May 11

Acceptance is a journey and it’s not linear. Hear us chat about it. #CDKL5 open.spotify.com/episode/1xG5...

Episode 16: Let’s Talk About Acceptance

CDKL5 in Color · Episode

open.spotify.com

Reposted by Marissa

odc-upenn.bsky.social @odc-upenn.bsky.social · May 1

Congratulations to the #CDKL5 Program of Excellence Pilot Grant 2025 awardees! These grants, awarded by the Loulou Foundation in collaboration with the @ODC_UPenn support critical research on #CDKL5. #raredisease #louloufoundation #grants

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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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Marissa @anothermarissa.bsky.social · Apr 4

How much do you know about adaptive clothing? Have a listen to the things we think about when dressing our kids with #CDKL5 (and how we dress now too!).

Listen on Spotify and Apple Podcasts!

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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Marissa @anothermarissa.bsky.social · Mar 31

Check it out!

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

Reposted by Marissa

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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Marissa @anothermarissa.bsky.social · Mar 28

New episode is out and it’s a quick but good one!

Listen on Spotify or Apple Podcasts! #CDKL5

open.spotify.com/episode/7J7h...

Hey! How Are We Doing??

CDKL5 in Color · Episode

open.spotify.com

Marissa @anothermarissa.bsky.social · Mar 28

🚨 Our pop-up shop is closing! Grab your gear to spread #CDKL5 awareness before it's gone! Shirts, totes, candles, mugs, and more!

Orders must be placed by March 30.

🛍 cdkl5-in-color.printify.me/products

Discover Our Exclusive Range at CDKL5 in Color

Store of CDKL5 in Color.

cdkl5-in-color.printify.me

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Marissa @anothermarissa.bsky.social · Mar 24

We are putting the finishing touches on our first quarterly newsletter! Get it to your inbox www.cdkl5incolor.com/newsletter-s...

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

Reposted by Marissa

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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Marissa @anothermarissa.bsky.social · Mar 15

CDKL-family of neuro disorders, wow! #CDKL5 #CDKL2 #CDKL1

Razz-Ma-Tazz @women-r-smarter.bsky.social · Mar 14

medicalxpress.com/news/2025-03...

New members of the CDKL family of 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 other four members of this family play in healt...

medicalxpress.com

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Marissa @anothermarissa.bsky.social · Mar 7

This was a fun (fun? 🤔) episode to record because it was all still fresh in my mind after spending two weeks inpatient with my son for flu A!

Never navigated a hospital stay with your child? Tune in to hear what it’s like. If you’ve been there, nod your head along with us as we share some stories.

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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Marissa @anothermarissa.bsky.social · Feb 24

When you are primary caregiver to a medically complex child, being able to travel is an incredible challenge so I absolutely appreciate when there are virtual options available!

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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Marissa @anothermarissa.bsky.social · Feb 21

This latest episode of the CDKL5 in Color podcast is a timely one as today is #NationalCaregiversDay. Tune in to hear how caregiving duties have impacted the career of this #CDKL5 mama.