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...
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 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!
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...
June is #CDKL5 awareness month! youtu.be/yujrZPijW2c?...
💚 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...
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...
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
✨🎙️ 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...
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!
Check it out!
✨🎙 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
New episode is out and it’s a quick but good one!
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
We are putting the finishing touches on our first quarterly newsletter! Get it to your inbox www.cdkl5incolor.com/newsletter-s...
New podcast episode it out! Sharing #CDKL5 stories, this time with Heather and Ezra!
spotifycreators-web.app.link/e/eGn59VmrwRb
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.
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!
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.
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
Thank you for listening!
