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. 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!

CDKL5 in Color is a society podcast hosted by Marissa Bishop, with 47 episodes on record and a Required Pod Score of 80.

Marissa Bishop hosts CDKL5 in Color, a society show with 47 episodes published.

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  Episode #47

  Episode 47: Olivia’s Life with Emryn (age 3)

  Oct 3, 202639 min

  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 Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma ! LINKS: Article: What is Cortical Visual Impairment? Epilepsy Foundation: Seizure Rescue Therapies Seizure Action Planning Soticlestat Managing Caregiver Anxiety: Coping Strategies & Support Katie Beckett Medicaid Waivers Parent to Parent USA Episode 6: Let’s Talk About Constipation 9 Reasons Standing Is Important, Types of Standing Frames “Standers” Nasogastric (NG) Feeding Tube Insertion and Care CDKL5 Parent Support Group on Facebook Vanderbilt CDKL5 Center of Excellence

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  Episode #46

  Episode 46: Let’s Talk About Respite

  Sep 26, 202630 min

  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 Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma ! LINKS: NORD’s Caregiver Respite Fund Connect by Support Now - Grant Finder Free Tool Article: State Medicaid Approaches to Respite Care for Children and Youth with Chronic and Complex Needs Publication - Pediatric Respite Homes: A Call to Action Respite Provider Screening Questions Ryan House in Arizona Respite Homes in the US Get To Know My Child - Respite Care Notebook (fillable)

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  Episode #44

  Episode 44: Exploring Caregiver Guilt (Part 3)

  Jun 1, 202624 min

  Episode 44: Exploring Caregiver Guilt (Part 3) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt. We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part three of this series we explore feelings of guilt related to decisions we’ve made. We’d love to hear your comments or feedback. Thanks for listening. 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! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma ! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network Website - Courageous Parents Network (search guilt) Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today Article - The Emotional Side of Caregiving, Family Caregiver Alliance Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

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  Episode #43

  Episode 43: Exploring Caregiver Guilt (Part 2)

  Jun 1, 202634 min

  Episode 43: Exploring Caregiver Guilt (Part 2) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt. We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part two of this series we explore feelings of guilt related to the negative feelings we sometimes have. We’d love to hear your comments or feedback. Thanks for listening. 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! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma ! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network Website - Courageous Parents Network (search guilt) Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today Article - The Emotional Side of Caregiving, Family Caregiver Alliance Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

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  Episode #42

  Episode 42: Exploring Caregiver Guilt (Part 1)

  Jun 1, 202629 min

  Episode 42: Exploring Caregiver Guilt (Part 1) Parent caregivers overwhelmingly want to do their best when caring for their child, but medical complexities, jam-packed appointment schedules, behavioral challenges, and systems that can seem like more of a burden than a support can leave caregivers feeling all sorts of unpleasant feelings about their role. In this special three-part series of the podcast for CDKL5 awareness month, we are exploring a common and harrowing emotion that many caregivers feel - guilt. We asked our peer CDKL5 caregivers the question, What have you felt guilty about in your role as caregiver? In part one of this series we explore feelings of guilt related to feeling like we are not doing enough. We’d love to hear your comments or feedback. Thanks for listening. 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! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma ! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network Website - Courageous Parents Network (search guilt) Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today Article - The Emotional Side of Caregiving, Family Caregiver Alliance Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy)

  ListenShow Notes

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