✨ It's here! Our quarterly newsletter is in your inbox! Didn't get a chance to subscribe? Read it here (and hit that subscribe button!): preview.mailerlite.io/preview/1263...

ICCRN work in print! Many thanks to the #CDKL5 families who have participated with these wonderful researchers!

New episode is out! Meet Kara and her 9 year old, Bennett! #CDKL5 open.spotify.com/episode/4PVX...

Excited to share our new preprint in @biorxiv-neursci.bsky.social "Cyclin-dependent kinase-like 5 (CDKL5) binds to talin and is anchored at the postsynaptic density via direct interaction with PDZ domains" Instead of a 🧵 the paper is summarised in this video. www.biorxiv.org/content/10.1...

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...

Hew episode is out! #CDKL5 spotifycreators-web.app.link/e/SZQnK55zaXb

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

✨ 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...

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

🙌 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!

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...

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...

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?...

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...

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...

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...

✨🎙️ 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...

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

✨ 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...

✨🎙 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 CDKL genes linked to neurodevelopmental disorders" #CDKL5 #CDKL1 #CDKL2

New podcast episode it out! Sharing #CDKL5 stories, this time with Heather and Ezra! spotifycreators-web.app.link/e/eGn59VmrwRb

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...

🦓 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.

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

🥳 We are celebrating a milestone! 1,000 plays! Have you listened to the CDKL5 in Color podcast yet? Listen to Marissa @anothermarissa.bsky.social and Amanda @women-r-smarter.bsky.social talk all things #CDKL5 Deficiency Disorder! Available on Spotify and Apple Podcasts!

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!

We have some pretty sweet #CDKL5 gear in our new pop-up shop! Order now for Rare Disease Day! www.cdkl5incolor.com/shop

👋 Who else is here for CDKL5?? go.bsky.app/QEDPkZ4

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

✨🎙 New podcast episode is out and we are talking constipation! We delve into the challenges of managing constipation in #CDKL5 Deficiency Disorder. We share our stories and suggest practical tips that you can consider with your child’s doctor. 🎧 Spotify & Apple Podcasts

✨🎙️ Podcast episode 5 is out and we are SO excited to have Deshaun in the studio talking about life with #CDKL5 and her 15-year-old son, Braylon! She talks about the importance of mental health support and her positive attitude will make you smile. "We always celebrate the little things." -Deshaun

✨💻 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!

✨🎙 New podcast episode is out! 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

✨💻 New Blog Post! "Life with Mimi: Rachel’s Reflections on Acceptance and Inclusion for a Daughter Who Lives Life in a Big Way" is ready for you to read! Check it out! ➡️ Read the blog: cdkl5incolor.blogspot.com/2024/12/life... 🎧 Listen to episode 3 on Spotify or Apple Podcasts!

✨🎙️ New podcast episode is out and we are SO excited to have Rachel in the studio talking about life with Mimi! "Mimi is Mimi. She’s my daughter. She’s lovely and she’s a sprite and she’s just spicy and fizzy and full of life. And she has #CDKL5 too, but it doesn’t change that she’s my Mimi."

✨💻 New Blog Post! Do you struggle with holiday stressors and/or emotions as a #CDKL5 caregiver? We share some advice in our latest blog post. Check it out! ➡️ Read the blog: cdkl5incolor.blogspot.com/2024/12/navi... 🎧 Listen to the CDKL5 in Color podcast on Spotify or Apple Podcasts

✨🎙️ New podcast episode is out and we are talking all things holidays! Holidays happen all year long and managing them can be difficult when you're living with #CDKL5 Deficiency Disorder. Hear how we manage and let us know if you can relate! 🎧 Listen on Spotify or Apple Podcasts

✨💻 New Blog Post! We’re diving into the world of podcasting and learning along the way! In our debut episode of CDKL5 in Color we discuss why we started the podcast and why storytelling matters for rare disease advocacy & community connection. 🎧 Listen on Spotify or Apple Podcasts

✨🎙️ Introducing CDKL5 in Color! 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 Disorder, a rare developmental and epileptic encephalopathy.

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.