iiinova — where your digital self keeps evolving

Reposted by Marissa

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

021

Reposted by Marissa

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

122

Reposted by Marissa

Ben Goult @bengoult.bsky.social · 30/08/2025

Almost all previous studies on CDKL5 have used a C-terminal tagging strategy (presumably to position the tag away from the kinase domain), but here we show that such modification of the C-term is disasterous as it abolishes CDKL5 synaptic localisation and function. www.biorxiv.org/content/10.1...

142

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!

011

Reposted by Marissa

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!

011

Reposted by Marissa

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

011

Marissa @anothermarissa.bsky.social · 10/06/2025

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

preview.mailerlite.io

Hey !

000

Reposted by Marissa

CDKL5 in Color @cdkl5incolor.bsky.social · 05/06/2025

🙌 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...

rarerevolutionmagazine.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...

021

Reposted by Marissa

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

021

Reposted by Marissa

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 !

031

Marissa @anothermarissa.bsky.social · 11/05/2025

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

open.spotify.com

Episode 16: Let’s Talk About Acceptance

CDKL5 in Color · Episode

010

Reposted by Marissa

odc-upenn.bsky.social @odc-upenn.bsky.social · 01/05/2025

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

011

Reposted by Marissa

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)

CDKL5 in Color · Episode

052

Marissa @anothermarissa.bsky.social · 04/04/2025

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!

030

Reposted by Marissa

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...

021

Marissa @anothermarissa.bsky.social · 28/03/2025

New episode is out and it’s a quick but good one! Listen on Spotify or Apple Podcasts! #CDKL5 open.spotify.com/episode/7J7h...

open.spotify.com

Hey! How Are We Doing??

CDKL5 in Color · Episode

000

Marissa @anothermarissa.bsky.social · 28/03/2025

🚨 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

cdkl5-in-color.printify.me

Discover Our Exclusive Range at CDKL5 in Color

Store of CDKL5 in Color.

010

Marissa @anothermarissa.bsky.social · 07/03/2025

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.

010

Marissa @anothermarissa.bsky.social · 24/02/2025

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!

020

Marissa @anothermarissa.bsky.social · 21/02/2025

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.

000

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

011

Reposted by Marissa

Razz-Ma-Tazz @women-r-smarter.bsky.social · 19/02/2025

Thank you for listening!

031

Marissa @anothermarissa.bsky.social · 19/02/2025

We are working to amplify #CDKL5 stories! Have you listened to the CDKL5 in Color podcast yet? Give our page a follow please!

010

Reposted by Marissa

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!

011

Marissa @anothermarissa.bsky.social · 01/02/2025

Really cute designs 🤩 Mugs, bags, shirts, candles! The Starfish Strong kids shirts are a personal favorite 😍 Go shop for #CDKL5!

010

Marissa @anothermarissa.bsky.social · 27/01/2025

👋 Let’s get some more people over here! #CDKL5

020

Marissa @anothermarissa.bsky.social · 24/01/2025

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

020

Marissa @anothermarissa.bsky.social · 24/01/2025

This was a fun topic to chat about and I didn’t use any 💩 emojis in any of the post copy! LOL except now! Have a listen to episode 6 of the CDKL5 in Color podcast on Spotify or Apple Podcasts and let us know what you think!

010

Reposted by Marissa

Rikke S. Møller @rikkesmoller.bsky.social · 15/01/2025

New preprint alert 📢 The natural history of #CDKL5 deficiency disorder into adulthood ❗ Our findings will inform management decisions, prognostication, and the design of clinical trials ‼️ Angel Aledo-Serrano & David Lewis-Smith 💪👏 #Epilepsy 🧠 #Genetics 🧬 www.medrxiv.org/content/10.1...

medrxiv.org

The natural history of CDKL5 deficiency disorder into adulthood

Knowledge of the natural history of CDKL5 deficiency disorder (CDD) is limited to the results of cross-sectional analysis of largely pediatric cohorts. Assessment of outcomes in adulthood is critical ...

082

Marissa @anothermarissa.bsky.social · 12/01/2025

Have a listen to this sweetheart CDKL5 mama 💜

010

Reposted by Marissa

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

031

Marissa @anothermarissa.bsky.social · 04/01/2025

Hear Amanda @women-r-smarter.bsky.social and I talk babies and epilepsy in episode 4! #CDKL5

020

Reposted by Marissa

Morgan @funnyguysixtynine.bsky.social · 02/01/2025

Last spring, my niece was diagnosed with a rare condition called CDKL5. My sister has had a fraught year trying to balance caring for her and losing her source of income. Any shares or donations are so beyond appreciated!! www.gofundme.com/f/stability-...

gofundme.com

Donate to Stability for Cece: Supporting Her Fight Against CDKL5, organized by Austine Beckley

On February 24, 2024, Cecilia made her way into the world. She … Austine Beckley needs your support for Stability for Cece: Supporting Her Fight Against CDKL5

021

Marissa @anothermarissa.bsky.social · 18/12/2024

"It doesn’t get discussed enough that there is this category of kiddos that are both physically, relatively able, but functionally extremely disabled, and the physical ability actually makes the functional disability so much harder…I was not prepared for the level of danger she poses to herself."

130

Marissa @anothermarissa.bsky.social · 13/12/2024

Rachel had me hanging on every word during our conversation and I am so excited for the world to hear about Mimi and peek into their life with #CDKL5. Enjoy!

020

Marissa @anothermarissa.bsky.social · 11/12/2024

☕️ Sharing some tips and thoughts about navigating special days on the calendar. Sometimes life with #CDKL5 means holidays look different year-to-year. As someone who loves traditions it can be hard on my heart and I have to work my flexibility muscle 💪 to go with the flow.

020

Marissa @anothermarissa.bsky.social · 06/12/2024

Who else can relate?! Give our latest episode a listen and let me know what you think! #CDKL5

020

Marissa @anothermarissa.bsky.social · 04/12/2024

Have you listened to CDKL5 in Color episode 1 yet? Check out the blog post for a quick read on what it’s all about!

020

Marissa @anothermarissa.bsky.social · 30/11/2024

Hope you will follow along with our new podcast covering all things #CDKL5 Deficiency Disorder!

030

Marissa @anothermarissa.bsky.social · 23/11/2024

My journey with #CDKL5 deficiency disorder began in 2016 when my infant son was diagnosed. Hearing that my new baby would likely never walk or talk and would face a lifetime struggle with seizures, I felt utter despair.

cdkl5incolor.com

Home

Channeling over 25 years of CDKL5 Deficiency Disorder caregiving and advocacy into powerful storytelling.

152