CDKL5 in Color

Marissa Bishop
  • 5.0 (17)
  • Society & Culture

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!

  1. 3d ago

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

    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

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

  2. Sep 26

    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 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)

    Episode 46: Let’s Talk About Respite

  3. Sep 12

    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 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: Ppod Chair Vanderbilt University Next Steps Program Firefly Splashy BIG Wheels for the Splashy BIG DEEP Webinar: Blended Diets 101 Episode 33: Blended Diet (CDKL5 in Color) Free eBook: Blended Diet Recipes DEEP Webinar: A Caregiver’s Guide to Seizure Medications (part one) Register: A Caregiver’s Guide to Seizure Medications (part two) COMBINEDBrain: Consortium for Outcome Measures and Biomarkers for Neurological Disorders Haystack Project ICCRN - International CDKL5 Clinical Research Network CANDID Study

    Episode 45: We’re Back for Season Three!

  4. Jun 1

    Episode 44: Exploring Caregiver Guilt (Part 3)

    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)

    Episode 44: Exploring Caregiver Guilt (Part 3)

  5. Jun 1

    Episode 43: Exploring Caregiver Guilt (Part 2)

    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)

    Episode 43: Exploring Caregiver Guilt (Part 2)

  6. Jun 1

    Episode 42: Exploring Caregiver Guilt (Part 1)

    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)

    Episode 42: Exploring Caregiver Guilt (Part 1)

  7. May 23

    Episode 41: Michal’s Life with Natalia (age 5)

    Episode 41: Michal’s Life with Natalia (age 5) There are families navigating a CDKL5 Deficiency Disorder diagnosis all over the world. What makes the diagnosis a little easier? Finding support within your own country if you’re lucky enough to have it. In this latest episode, we welcome CDKL5 Dad, Michal, who is doing big things with his fellow CDKL5 families in Poland. He’s also Chair of the Leadership Board of the CDKL5 Alliance. His reason for getting involved is his beautiful daughter, Natalia, who lives with CDD. Michal shares how Natalia’s impacted by CDD, the close relationship she has with her adoring big brother, Jan, and how Natalia is charting her own course, working hard, and starting her journey in kindergarten. He’s a proud Dad, and we’re sure you’ll enjoy our chat. Thanks for joining us, Michal! 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: Follow Natalia’s Story on Instagram Follow CDKL5 Poland on Instagram CDKL5 Alliance 5 Ways Therapy Dogs Can Help Kids Guide: Supporting Siblings Through a Serious Medical Condition: What to Say Infographic 8 Tips to Communicate Effectively and Compassionately to Help Siblings Cope Supporting Siblings of Children with Medical Conditions

    Episode 41: Michal’s Life with Natalia (age 5)

  8. May 9

    Episode 40: Let's Talk About Moments of Joy

    Episode 40: Let's Talk About Moments of Joy Life with CDKL5 is filled with uncertainty, difficult decision-making, and sometimes heartbreak, but there are also moments of joy, so let’s talk about them. Taking time to recognize the moments in life that spark joy for us as parent caregivers can be a boost for our mental health. In fact, actively engaging in “micro-acts” of joy has been shown to lead to greater well-being, better coping, less stress, and more satisfaction with relationships. This episode comes out over Mother’s Day weekend. We know it can be an emotional holiday, so if you’re feeling unpleasant at all, please know that we are sending love your way. 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: Can little actions bring big joy? Researchers find 'micro-acts' can boost well-being The BIG JOY Project: Try your first micro-act of JOY now! Article: The Power of Positive: Reframing a Negative Outlook 988 Crisis Line

    Episode 40: Let's Talk About Moments of Joy
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Trailer

5
out of 5
17 Ratings

About

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!

Information

  • Creator
    Marissa Bishop
  • Years Active
    2024 - 2026
  • Episodes
    48
  • Rating
    Clean
  • Copyright
    © Marissa Bishop
  • Show Website
    CDKL5 in Color

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