CDKL5 in Color

Marissa Bishop

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. Episode 38: Aditi’s Life with Ria (age 6)

    12. APR.

    Episode 38: Aditi’s Life with Ria (age 6)

    Episode 38: Aditi’s Life with Ria (age 6) Parenthood changes us, no question, but the adjustments we make when parenting a child with medical complexities and disabilities takes the experience to another level. In this latest episode, you’ll hear Aditi’s experiences raising her feisty eldest daughter, Ria, who lives with CDKL5 Deficiency Disorder. We talk about the intensities of caregiving and the impact this life has on siblings, including worries about the future. We also explore the benefits of finding a school program that works, the need for more support at home for a high-energy child, and the lack of spaces where families can be comfortable and happy as a whole unit. Thanks for joining us, Aditi! 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: ABA Therapy - Applied Behavior Analysis Article: Always Coping, Rarely Seen: Explaining Glass Child Syndrome Episode 3: Rachel’s Life with Mimi Article: Taking Care of YOU: Self-Care for Family Caregivers

    36 Min.
  2. Episode 37: Let’s Talk About Gene Therapy

    28. MÄRZ

    Episode 37: Let’s Talk About Gene Therapy

    Episode 37: Let’s Talk About Gene Therapy Gene therapy is on people’s minds, so let’s talk about it! What is known, what is unknown, and how are we meant to make sense of it all? We know from the quiz that we put out in September that, while most respondents had a decent understanding of the basics of gene therapy as a treatment approach, the majority did not understand the CDKL5 gene therapy landscape nor the average timeline and costs associated with bringing a treatment like this to humans. In this episode, we talk about what we see happening and share our thoughts about these treatments that aim to get at the root cause of CDKL5 deficiency disorder. We also talk about what we can be doing as caregivers to support our loved ones in the here and now while we await the treatments of the future. Episode recorded March 18, 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! CDKL5inColor@gmail.com Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma!LINKS: Ultragenyx Gene Therapy Ultragenyx Website November 2021 Webinar - Gene Therapy: A Conversation With Dr Benke & Ultragenyx August 2022 Webinar - CDD Research Updates from Ultragenyx November 2022 - Ultragenyx Community Update Letter February 2023 Webinar - Ultragenyx Preclinical UXO55 Update November 2023 - Ultragenyx Community Update Letter April 2024 - Ultragenyx Community Update Letter September 2025 Facebook Post - PAG Community Letter re: Ultragenyx Elaaj Bio Gene Therapy Elaaj Bio Website February 2026 Webinar: Update on ELJ-101: A gene therapy for CDD CDKL5 Forum 2025 Summary (includes links to prior year summaries) ⁠Patient-Focused Drug Development (PFDD) meeting with the FDA "Voice of the Patient Report"⁠ CDKL5 Gene Therapy (Jainu Jogani) www.CDKL5GeneTherapy.com October 2025 Webinar: Gene Therapy for CDKL5: The History, Progress & Next Steps Resources for Caregivers American Society for Gene & Cell Therapy Patient Education Enroll in the International CDKL5 Disorder Database! Episode 16: Acceptance DEE-P Connections Webinars Book: Caring for Children Who Have Severe Neurological Impairment: A Life with Grace by Julie M. Hauer, M.D.

    29 Min.
  3. Episode 36: Let’s Talk About Bathing Our Kids

    14. MÄRZ

    Episode 36: Let’s Talk About Bathing Our Kids

    Episode 36: Let’s Talk About Bathing Our Kids Either love it or hate it (or somewhere in between), bathing our kids is part of life. For many families living with CDKL5 Deficiency Disorder, bath time can be tricky due to positioning challenges, lifting and transferring, less-than-ideal spaces, or sensory issues. In this latest episode, we talk about how we manage, and we share equipment, tips, and tricks we use to keep our kids fresh and clean. We talk haircuts too! Shout out to the caregivers who chimed in on our Facebook post: Jenn, Lauren, Renee, Danielle, Kiera, Kim, Sarina, Taylor, Melissa, Christina, Heather, & Christine. 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: Scrubzz Rinse Free Soap & Shampoo Bath Sponges Wet Ones Body Wipes ShowerBuddy BathLyft Trakz - Bath Straddle System for Tub Rifton WAVE Chair and Transfer System for Tub Rifton MEDIUM HTS Hygiene and Toileting System Firefly Splashy Chair Glo Pals Water Activated Light Up Bath Toys Therapy Wraps Article: Abdominal Massage for Constipation eBook: Charlie Foundation - Keto Friendly Personal Care Products

    29 Min.
  4. Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg

    28. FEB.

    Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg

    Episode 35: AI Chat with Cure5 Co-Founder Andreas Borg How can AI impact the future of CDKL5 research? We tackle this topic and more with our guest, CDKL5 Dad and Cure5 Foundation co-founder, Andreas Borg. His 4 year old daughter, Siena, lives with CDKL5 deficiency disorder. Andreas shares about Cure5 Foundation which has multiple drug repurposing projects in the pipeline for CDKL5, including one called EveryStone (leaving no stone unturned!). They also have a new tool on their website that uses AI technology to allow caregivers (and others) to ask questions directly to the existing body of CDKL5 research, and get answers back with citations in their own language. Technology is amazing! Thanks for joining us, Andreas! 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! MENTIONED IN THE EPISODE: Cure5 Foundation Website Chat With Research Papers Tool YouTube: Cure5 Knowledge Engine - Caregiver Mode EveryStone Project SienaForLife on Instagram LouLou Foundation

    33 Min.
  5. Episode 34: Kim’s Life with LilyAnna (age 23)

    14. FEB.

    Episode 34: Kim’s Life with LilyAnna (age 23)

    Episode 34: Kim’s Life with LilyAnna (age 23) In our latest episode we welcome OG CDKL5 mama, Kim. She’s busy managing a large family in Arizona, which includes caregiving for her 23-year-old daughter, Lily, who lives with CDKL5 Deficiency Disorder. We talk all about the complexities Kim is navigating now that Lily is an adult, including lack of appropriate day programming, how adult medical care differs from pediatrics, and the ever-present challenge of finding respite care. Kim reflects on how caregiver advocacy doesn’t end when your child turns 18. The fight to ensure our children have what they need is an ongoing struggle, but we are powered by love to continue the fight. Thanks for joining us, Kim! 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! MENTIONED IN THE EPISODE: Calm Amongst the Chaos - Kim’s Blog CAC Family Support (Arizona) Voice of the Patient Report: CDKL5 Article: AAC Systems for Communication CDKL5 Mama Pilates on Instagram Ryan House Respite in Arizona Keifer Swim Collar Gregory’s Swim Collar with Harness RESOURCES: Book: Comprehensive Literacy for All Article: Essential Tips for Caregiver Lifting

    31 Min.
  6. Episode 33: Let’s Talk About Tube Feeding

    31. JAN.

    Episode 33: Let’s Talk About Tube Feeding

    Episode 33: Let’s Talk About Tube Feeding Adequate nutrition and hydration are the foundation of health. Unfortunately, it can be difficult for people living with CDKL5 Deficiency Disorder to take in all that they need to be well nourished or to maintain their growth curve. A feeding tube can help close the gap for oral eaters and is a necessity for anyone who cannot eat safely by mouth. In this episode, we talk about different types of feeding tubes, the variety of methods that tube feeds can be administered, and the options caregivers have when deciding what to feed through the tube. You’ll hear a lot from Marissa, whose son has been tube fed for many years. She shares about their journey to the tube and how she feeds her son a homemade blended diet. 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! MENTIONED IN THE EPISODE: Cleveland Clinic Article: Tube Feeding (Enteral Nutrition) Facebook Group Blenderized RN Real Food Blends Free eBook: Blended Diet Recipes (includes Marissa’s blogs) GeneReviews: CDKL5 Kohl’s Adaptive Onesies Book: Homemade Blended Formula Handbook Natural Tube Feeding Course Feeding Tube Awareness Week RESOURCES: Article: SickKids-led study shows success with a blenderized diet for children with G-tubes Publication: Pureed by gastrostomy tube diet improves gagging and retching in children with fundoplication Publication: Blenderized Enteral Nutrition Diet Study Publication: Efficacy and Tolerance of Blended Diets in Children Receiving Gastrostomy Feeds Publication: Health Outcomes and Quality of Life Indices of Children Receiving Blenderized Feeds via Enteral Tube

    33 Min.
  7. Episode 32: Ali’s Life with Raegan (age 5)

    17. JAN.

    Episode 32: Ali’s Life with Raegan (age 5)

    Episode 32: Ali’s Life with Raegan (age 5) In this episode, we welcome Ali to the podcast to talk about life with her five-year-old daughter, Raegan. We touch on topics that all CDKL5 caregivers can relate to. How to find therapies that work, especially when living in rural areas. Navigating the transition into the school system. Earning income when employment feels impossible. And, of course, the isolation that comes with being an at-home caregiver providing full-time and total care for your child. Ali’s descriptions of her daughter will make you smile - she’s a spitfire! Their relationship is special. After all, there’s no one quite like mom. Thanks for joining us, Ali! 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! MENTIONED IN THE EPISODE: Barometric Pressure and Seizure Increases (article) EPSY Seizure Tracking App Article: How does CVI affect skill development beyond vision? Georgia GAPP Program Resource Guide: Educational Advocacy

    26 Min.
  8. Episode 31: Let’s Ring Out 2025

    20.12.2025

    Episode 31: Let’s Ring Out 2025

    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! CDKL5inColor@gmail.com 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)

    27 Min.
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Info

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!

Informationen

  • Erstellt von
    Marissa Bishop
  • Jahre aktiv
    2024 - 2026
  • Folgen
    39
  • Bewertung
    Unbedenklich
  • Copyright
    © Marissa Bishop
  • Sendungswebsite
    CDKL5 in Color

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