CDKL5 in Color

CDKL5 in Color

By Marissa BishopSociety & Culture
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CDKL5 in Color episodes

  • 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! [email protected]

    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

About CDKL5 in Color

From the publisher's feed

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.