Advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder

About the Loulou Foundation

Loulou Foundation is a private non-profit UK foundation dedicated to advancing research and development of therapeutics for CDKL5 Deficiency Disorder (CDD), a rare neurodevelopmental condition that affects tens of thousands of families worldwide. Since its establishment in 2015, the Foundation has funded important research projects at world-leading universities and research organizations, with a total of over 100 separate projects in more than 60 labs on four continents, enabling the focused research of greater than 200 scientists. Every year since 2015, the Foundation has hosted the CDKL5 Forum, an annual international symposium dedicated to CDKL5 and CDD. The CDKL5 Forum has become the preeminent scientific meeting dedicated to CDKL5, with nearly 200 scientists, clinicians, pharma industry representatives, and regulatory experts attending the most recent CDKL5 Forum. On October 27-28, 2025, the CDKL5 Forum will be held in Boston, USA, for two days of meetings covering basic science, translational and clinical development, and therapeutics updates on CDD. The Foundation has also launched an online portal to enable enhanced communication and collaboration by CDKL5 researchers: www.cdkl5forum.org.

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Loulou Foundation

Marinus Pharmaceuticals Receives Positive CHMP Opinion for ZTALMY® (ganaxolone) for the Adjunctive Treatment of Seizures Associated With CDKL5 Deficiency Disorder

26 May 2023

Marinus Pharmaceuticals, Inc. (Nasdaq: MRNS), a pharmaceutical company dedicated to the development of innovative therapeutics to treat seizure disorders, today announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has adopted a positive opinion recommending the approval of ZTALMY® (ganaxolone) oral suspension for the adjunctive treatment of epileptic seizures associated with cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) in patients two to 17 years of age. ZTALMY may be continued in patients 18 years of age and older.

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