🦓 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 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!

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 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.