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

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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)