Marissa
@anothermarissa.bsky.social
#CDKL5 🧬 | Former school social worker turned stay-at-home medical mama | 🎙️Producer, content creator, & co-host of the CDKL5 in Color Podcast @cdkl5incolor.bsky.social
www.CDKL5inColor.com
www.CDKL5inColor.com
Pinned
Marissa
@anothermarissa.bsky.social
· Jan 24
Interested in #CDKL5? Check out the CDKL5 in Color podcast on Spotify & Apple Podcasts and visit our website!
Reposted by Marissa
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...
Reposted by Marissa
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...
Reposted by Marissa
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...
August 30, 2025 at 1:28 PM
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...
🙌 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!
Reposted by Marissa
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!
Listen! Like! Share!
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 6:37 PM
Listen! Like! Share!
Reposted by Marissa
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 quarterly newsletter is out! preview.mailerlite.io/emails/webvi...
Hey !
preview.mailerlite.io
June 10, 2025 at 8:47 PM
Our quarterly newsletter is out! preview.mailerlite.io/emails/webvi...
Reposted by Marissa
Reposted by Marissa
🙌 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...
Reposted by Marissa
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?...
💚 June is #CDKL5 awareness month youtu.be/yujrZPijW2c
Get to Know CDKL5 Deficiency Disorder
YouTube video by CDKL5 in Color
youtu.be
June 1, 2025 at 2:47 PM
💚 June is #CDKL5 awareness month youtu.be/yujrZPijW2c
Reposted by Marissa
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...
Reposted by Marissa
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...
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
May 11, 2025 at 1:33 PM
Acceptance is a journey and it’s not linear. Hear us chat about it. #CDKL5 open.spotify.com/episode/1xG5...
Reposted by Marissa
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
May 1, 2025 at 1:24 PM
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
Reposted by Marissa
✨🎙️ 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...
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!
Listen on Spotify and Apple Podcasts!
🎙️ 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 4:35 PM
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!
Listen on Spotify and Apple Podcasts!
Check it out!
✨ 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 6:15 PM
Check it out!
Reposted by Marissa
✨🎙 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
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
March 29, 2025 at 5:58 PM
✨🎙 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
Sign up so you get all the info right to your inbox: www.cdkl5incolor.com/newsletter-s...
🎧 Listen on Spotify or Apple Podcasts
New episode is out and it’s a quick but good one!
Listen on Spotify or Apple Podcasts! #CDKL5
open.spotify.com/episode/7J7h...
Listen on Spotify or Apple Podcasts! #CDKL5
open.spotify.com/episode/7J7h...
Hey! How Are We Doing??
CDKL5 in Color · Episode
open.spotify.com
March 28, 2025 at 11:59 PM
New episode is out and it’s a quick but good one!
Listen on Spotify or Apple Podcasts! #CDKL5
open.spotify.com/episode/7J7h...
Listen on Spotify or Apple Podcasts! #CDKL5
open.spotify.com/episode/7J7h...
🚨 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
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
March 28, 2025 at 1:56 AM
🚨 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
Orders must be placed by March 30.
🛍 cdkl5-in-color.printify.me/products
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
March 24, 2025 at 11:53 PM
We are putting the finishing touches on our first quarterly newsletter! Get it to your inbox www.cdkl5incolor.com/newsletter-s...
Reposted by Marissa
New podcast episode it out! Sharing #CDKL5 stories, this time with Heather and Ezra!
spotifycreators-web.app.link/e/eGn59VmrwRb
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
March 15, 2025 at 5:30 PM
New podcast episode it out! Sharing #CDKL5 stories, this time with Heather and Ezra!
spotifycreators-web.app.link/e/eGn59VmrwRb
spotifycreators-web.app.link/e/eGn59VmrwRb
