Australian Foundation for CDKL5 Research

05/11/2025

Exciting progress and global connection at the LouLou Foundation’s 2025 CDKL5 Forum! Ana Mingorance’s latest blog recaps a landmark year for CDKL5 research -highlighting more therapy options, bold new scientific breakthroughs, and the strength of our global alliance of families, advocates, and researchers.

Catch Ana’s insights on how science, hope, and collaboration are driving us closer to cures for CDKL5 Deficiency Disorder. Read the spotlight at the link below:
🔹https://www.draccon.com/dracaena-report/2025forum

03/11/2025

Too many seizures. CDD needs that cure now

November is Epilepsy Awareness Month! At IFCR, we’re standing with the 3.4 million Americans living with epilepsy and shining a special spotlight on rare epilepsies like CDKL5 Deficiency Disorder✨

Did you know? Nearly every individual with CDKL5 experiences seizures, often beginning within the first few months of life, and most face daily, treatment-resistant epilepsy. This month, help us raise awareness for CDKL5 families and advocate for more research, understanding, and hope.

Together for change. Together for every story💜

27/06/2025

🎉 Encouraging news for the CDKL5 community!

UCB’s Phase 3 study of fenfluramine in CDKL5 Deficiency Disorder (CDD) has shown positive results, meeting primary and key secondary endpoints.

🫶UCB plans to seek regulatory approval as soon as possible.

💚 A heartfelt thank you to the CDKL5 families whose participation made this possible. Your strength and dedication are helping move science forward.

🔗 Read more: https://www.ucb.com/newsroom/press-releases/article/ucb-announces-positive-results-from-gemz-phase-3-study-of-fenfluramine-in-cdkl5-deficiency-disorder

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18/04/2025

What do many children and adults experience who live with CDKL5 Deficiency Disorder? Thanks Canada.

🧩 CDKL5 Disorder: A Unique Journey for Every Individual 💜

CDKL5 disorder affects each person differently—there is no one-size-fits-all experience. While many individuals face challenges such as seizures, mobility difficulties, communication barriers, and developmental delays, the way these symptoms manifest can vary widely.

Some may walk, others may not. Some may use words, while others communicate in different ways. Seizure severity, medical complexities, and daily experiences all differ, making every journey with CDKL5 unique and deeply personal.

At CDKL5 Canada, we recognize and celebrate the strength of every individual and family affected. 💙 You are not alone—we are here to support you.

09/04/2025

Cdkl5 Deficiency Disorder in a nutshell

13/03/2025

Come Find Us Geelong Disability Expo! Hosted at the Geelong Arena 14th & 15th March