Episode 37: Let’s Talk About Gene Therapy

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 [http://www.cdkl5incolor.com] Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com [CDKL5inColor@gmail.com] Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma [https://www.ucb-usa.com/Patients]! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network [https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS] Website - Courageous Parents Network (search guilt) [https://courageousparentsnetwork.org/] Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today [https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt] Article - The Emotional Side of Caregiving, Family Caregiver Alliance [https://www.caregiver.org/resource/emotional-side-caregiving/] Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling [https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/] Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins [https://www.amandagriffithatkins.com/book] Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy) [https://dravetfoundation.org/caregiver-resources/caregiver-connect/]

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 [http://www.cdkl5incolor.com] Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com [CDKL5inColor@gmail.com] Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma [https://www.ucb-usa.com/Patients]! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network [https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS] Website - Courageous Parents Network (search guilt) [https://courageousparentsnetwork.org/] Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today [https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt] Article - The Emotional Side of Caregiving, Family Caregiver Alliance [https://www.caregiver.org/resource/emotional-side-caregiving/] Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling [https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/] Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins [https://www.amandagriffithatkins.com/book] Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy) [https://dravetfoundation.org/caregiver-resources/caregiver-connect/]

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 [http://www.cdkl5incolor.com] Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com [CDKL5inColor@gmail.com] Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma [https://www.ucb-usa.com/Patients]! LINKS: Webinar - Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver, Courageous Parents Network [https://youtu.be/PE40UkY7-us?si=c9zrCX7LJqjakEcS] Website - Courageous Parents Network (search guilt) [https://courageousparentsnetwork.org/] Article - What is Caregiver Guilt? How to Recognize and Overcome Caregiver Guilt, Psychology Today [https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt] Article - The Emotional Side of Caregiving, Family Caregiver Alliance [https://www.caregiver.org/resource/emotional-side-caregiving/] Article - 7 Actionable Tips to Overcome Caregiver Guilt, Blue Moon Senior Counseling [https://bluemoonseniorcounseling.com/7-tips-for-dealing-with-caregiver-guilt/] Book - How to Handle More Than You Can Handle, Amanda Griffith-Atkins [https://www.amandagriffithatkins.com/book] Self-Paced Program - Caregiver Connect (helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy) [https://dravetfoundation.org/caregiver-resources/caregiver-connect/]

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 [http://www.cdkl5incolor.com] Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com [CDKL5inColor@gmail.com] Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma [https://www.ucb-usa.com/Patients]! LINKS: Follow Natalia’s Story on Instagram [https://www.instagram.com/cdkl5_natalia/] Follow CDKL5 Poland on Instagram [https://www.instagram.com/cdkl5_poland/] CDKL5 Alliance [https://cdkl5alliance.org/] 5 Ways Therapy Dogs Can Help Kids [https://www.therapydogs.com/ways-therapy-dogs-can-help-kids/] Guide: Supporting Siblings Through a Serious Medical Condition: What to Say Infographic [https://courageousparentsnetwork.org/guides/supporting-siblings-through-a-serious-medical-condition-what-to-say-infographic/] 8 Tips to Communicate Effectively and Compassionately to Help Siblings Cope [https://courageousparentsnetwork.org/blog/8-tips-to-communicate-effectively-and-compassionately-to-help-siblings-cope/] Supporting Siblings of Children with Medical Conditions [https://www.luriechildrens.org/en/blog/supporting-siblings-of-children-with-medical-conditions/]

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 [http://www.cdkl5incolor.com] Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube! Email us to be on the show! CDKL5inColor@gmail.com [CDKL5inColor@gmail.com] Thank you to our 2026 Airwave Ally Sponsor - UCB Pharma [https://www.ucb-usa.com/Patients]! LINKS:  Article: Can little actions bring big joy? Researchers find 'micro-acts' can boost well-being [https://www.npr.org/sections/health-shots/2023/11/14/1212908276/can-little-actions-bring-big-joy-researchers-say-micro-acts-can-boost-well-being] The BIG JOY Project: Try your first micro-act of JOY now! [https://ggia.berkeley.edu/bigjoy] Article: The Power of Positive: Reframing a Negative Outlook [https://www.brownhealth.org/be-well/power-positive-reframing-negative-outlook] 988 Crisis Line [https://988lifeline.org/]