It’s a beautiful thing to have a day filled with peaceful joy, but oftentimes when your child has a diagnosis of CDKL5 Deficiency Disorder, a holiday can feel anything but peaceful or joyful. Unfortunately, sometimes what should be a special day can feel emotionally and/or physically draining.

So, what can we do to survive holidays with CDKL5?

In this latest podcast episode, we dive into how we manage these special days in our families. Spoiler - it’s giving ourselves and our children a lot of grace and leaning into what works for our unique life instead of holding on to traditions that don’t serve us.

SHOW NOTES

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Check out our website www.CDKL5inColor.com

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Purple Pumpkin Project

• CVI - Cortical Visual Impairment

• Adaptive Bike Fundraiser

• Meow Wolf

• Little Room

• Activity Arch

Why start a CDKL5 podcast?

CDKL5 in Color is a passion project that stems from us wanting to do more to amplify CDKL5 and to connect with other diagnosed families who might be looking for support out in the world of podcasts. Like other rare diseases, you’re not going to just bump into someone in the store who knows CDKL5 or find people by chance. You really need to seek out members of this CDKL5 community for that connection. We hope our podcast provides an avenue to do that.

SHOW NOTES

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Check out our website ⁠www.CDKL5inColor.com⁠

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Poem “Patchwork Heart” by John Roedel
• CDKL5 Patient Focused Drug Development meeting with the FDA (2019)
• Katie Beckett Waiver

STORYTELLING RESOURCES:

• Global Genes “Using Storytelling to Raise Awareness for Your Rare Disease” 
• Rare Action “How to Write a Patient Story”
• NIH “Communicating About Rare Diseases"
• Rare Disease Film Festival “The 8 Stages of Rare Disease Advocacy”

The podcast you’re listening to is CDKL5 in Color. 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.

Together they’ll explore life with CDKL5 in a variety of topic-based candid chats. They’ll also invite you to get to know members of the CDKL5 community through interview episodes that are sure to leave you feeling informed, inspired and connected.

The goal? To weave a tapestry of vibrant community stories for you to explore.