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.

Episode 31: Let’s Ring Out 2025

It’s been a great year for us at CDKL5 in Color! Thank you to all our listeners and supporters. YOU are the reason behind it all and we are grateful. To ring out the year, we asked our listeners to share with us their celebrations, challenges, wisdom, worries, wonders, hopes - anything about life with CDKL5 that reflects on how 2025 went or that looks towards 2026. We share our own thoughts as well. Wishing you all a peaceful end to the year and we can’t wait to continue the conversations in 2026!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

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

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

MENTIONED IN THE EPISODE:

UCB presents positive results from GEMZ phase 3 study at AES showing fenfluramine significantly reduces countable motor seizure frequency in CDKL5 Deficiency Disorder

2025 CDKL5 in Color WRAPPED

EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) is a crucial Medicaid law ensuring children under 21 with disabilities get comprehensive health services

OCR - Office of Civil Rights (investigates disability discrimination insuring equal access to education)

Soticlestat Appeal Video

Traveling with a Medically Complex Child Resources

Letter of Intent (documenting your child’s likes etc for future caregivers)

Episode 31: Let’s Ring Out 2025

It’s been a great year for us at CDKL5 in Color! Thank you to all our listeners and supporters. YOU are the reason behind it all and we are grateful. To ring out the year, we asked our listeners to share with us their celebrations, challenges, wisdom, worries, wonders, hopes - anything about life with CDKL5 that reflects on how 2025 went or that looks towards 2026. We share our own thoughts as well. Wishing you all a peaceful end to the year and we can’t wait to continue the conversations in 2026!

SHOW NOTES

Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com

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

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

MENTIONED IN THE EPISODE:

UCB presents positive results from GEMZ phase 3 study at AES showing fenfluramine significantly reduces countable motor seizure frequency in CDKL5 Deficiency Disorder

2025 CDKL5 in Color WRAPPED

EPSDT (Early and Periodic Screening, Diagnostic, and Treatment) is a crucial Medicaid law ensuring children under 21 with disabilities get comprehensive health services

OCR - Office of Civil Rights (investigates disability discrimination insuring equal access to education)

Soticlestat Appeal Video

Traveling with a Medically Complex Child Resources

Letter of Intent (documenting your child’s likes etc for future caregivers)