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. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights.
Our goal? To weave a tapestry of vibrant community stories.
Have a CDKL5 story to share? Get in touch!
Episode 47: Olivia’s Life with Emryn (age 3)
Life with CDKL5 is a family affair and Olivia knows that better than most! In this latest episode of the podcast, Olivia shares about life with her large family, including her sweet, snuggly three-year-old, Emryn, who lives with CDD. We talk about the challenges of navigating medical care when knowledgeable providers are far from home, and how frustrating it is to access services within systems that aren’t designed to truly educate families on what’s available. We also dive into the emotions of caregiving and hear Olivia’s perspective on releasing what she cannot control. Thanks for joining us, Olivia!
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com (http://www.cdkl5incolor.com)
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! CDKL5inColor@gmail.com (mailto:CDKL5inColor@gmail.com)
Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma (https://www.ucb-usa.com/Patients)!
LINKS:
Article: What is Cortical Visual Impairment? (https://www.perkins.org/what-is-cvi/)
Epilepsy Foundation: Seizure Rescue Therapies (https://www.epilepsy.com/treatment/seizure-rescue-therapies)
Seizure Action Planning (https://seizureactionplans.org/seizure-action-plans/)
Soticlestat (https://www.sciencedirect.com/science/article/abs/pii/S1059131126000944)
Managing Caregiver Anxiety: Coping Strategies & Support (https://www.caregiveraction.org/anxiety/)
Katie Beckett Medicaid Waivers (https://www.kidswaivers.org/)
Parent to Parent USA (https://www.p2pusa.org/)
Episode 6: Let’s Talk About Constipation (https://open.spotify.com/episode/2GD6Mi59CB6tIZZHKgJXTG?si=g7NrHqrfQ1K_wNJAXSilMg)
9 Reasons Standing Is Important, Types of Standing Frames “Standers” (https://www.leckey.com/parent-hub/standing-why-stand)
Nasogastric (NG) Feeding Tube Insertion and Care (https://www.childrenscolorado.org/doctors-and-departments/departments/surgery/services-we-offer/nasogastric-tube-ng-tubes/)
CDKL5 Parent Support Group on Facebook (https://www.facebook.com/groups/CDKL5)
Vanderbilt CDKL5 Center of Excellence (https://cdkl5.com/vanderbilt-center-of-excellence)
26 Sept 2026
Episode 46: Let’s Talk About Respite
Episode 46: Let’s Talk About Respite
It’s the number one unmet need that #CDKL5 caregivers have mentioned on our show, and we know exactly why. When your child needs 24/7, specialized care, it’s not easy to do it on your own, and it’s even harder to find someone else who you can trust to meet your child’s needs. Medication management, lifting and positioning, behavior management, seizure safety, specialized feeding needs, and more - it takes a special person to fill the caregiving role for our kids. In this episode, we talk about what respite is (and what it’s not) and how we’ve navigated respite in our own lives. We also offer suggestions to families for finding and funding respite.
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com (http://www.cdkl5incolor.com)
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! CDKL5inColor@gmail.com (mailto:CDKL5inColor@gmail.com)
Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma (https://www.ucb-usa.com/Patients)!
LINKS:
NORD’s Caregiver Respite Fund (https://rarediseases.org/patient-assistance-programs-old/caregiver-respite/)
Connect by Support Now - Grant Finder Free Tool (https://grants.supportnow.org/)
Article: State Medicaid Approaches to Respite Care for Children and Youth with Chronic and Complex Needs (https://nashp.org/state-medicaid-approaches-to-respite-care-for-children-and-youth-with-chronic-and-complex-needs/)
Publication - Pediatric Respite Homes: A Call to Action (https://publications.aap.org/pediatrics/article/155/6/e2024070217/201872/Pediatric-Respite-Homes-A-Call-to-Action?autologincheck=redirected)
Respite Provider Screening Questions (https://www.rewardingwork.org/respite-provider-screening-questions)
Ryan House in Arizona (https://ryanhouse.org/)
Respite Homes in the US (https://childrensrespitehomes.org/)
Get To Know My Child - Respite Care Notebook (fillable) (https://www.childneurologyfoundation.org/respite-care/)
12 Sept 2026
Episode 45: We’re Back for Season Three!
Episode 45: We’re Back for Season Three!
The CDKL5 in Color podcast is back with new episodes! To kick off season three, join us as we catch up about our summer break, reflect about awareness month, and look ahead to what’s to come. We’re excited to continue weaving a tapestry of beautiful #CDKL5 stories! Have a topic you’d like to hear about? Want to be a guest on our show? Message us! We’d love to hear from you!
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com (http://www.cdkl5incolor.com)
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! CDKL5inColor@gmail.com (mailto:CDKL5inColor@gmail.com)
Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma (https://www.ucb-usa.com/Patients)!
LINKS:
Ppod Chair (https://www.inspiredbydrive.com/product/p-pod/)
Vanderbilt University Next Steps Program (https://peabody.vanderbilt.edu/nextsteps/)
Firefly Splashy BIG (https://firefly.sunrisemedical.com/us/en/our-products/splashy-big/)
Wheels for the Splashy BIG (https://a.co/d/07qJ8BZK)
DEEP Webinar: Blended Diets 101 (https://deepconnections.net/2026/08/07/blended-diets-101-benefits-basics-getting-started-2/)
Episode 33: Blended Diet (CDKL5 in Color) (https://open.spotify.com/episode/5FaZJQZ5d9usyyZQBof74A?si=k3zD3LMkR3Gn-OfVwbPgiw)
Free eBook: Blended Diet Recipes (https://www.cdkl5incolor.com/free-ebooks)
DEEP Webinar: A Caregiver’s Guide to Seizure Medications (part one) (https://youtu.be/dsJE9G-eaDU?si=-PegTfooeoXeKwZq)
Register: A Caregiver’s Guide to Seizure Medications (part two) (https://deepconnections.net/events/)
COMBINEDBrain: Consortium for Outcome Measures and Biomarkers for Neurological Disorders (https://combinedbrain.org/)
Haystack Project (https://haystackproject.org/)
ICCRN - International CDKL5 Clinical Research Network (https://cdkl5researchnetwork.org/)
CANDID Study (https://candidstudycdkl5.info/)
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
YouTube views
2,334
Score snapshot 15 Sept 2025
Apple Podcasts (US)
5.0 / 5
17 ratings
Spotify
5.0 / 5
10 ratings
Podcast Authority Score: 43 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
39
Social presence
0
YouTube
68
Engagement
51
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