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 into the understanding and development of therapeutics for CDKL5 deficiency disorder. The Foundation has already funded important research projects at leading universities and institutions in the US, Europe, and Asia, with a total of over 60 separate projects in 56 labs at 45 different institutions so far, enabling the focused research of over 180 scientists. Beginning in 2015, the Foundation has hosted an annual international symposium, the CDKL5 Forum, attended by leading CDKL5 pre-clinical and clinical researchers from around the world. While the first CDKL5 Forum meetings were held at The Wellcome Trust in London, since 2017 the CDKL5 Forum has alternated its host site between London and the United States city of Boston, with the CDKL5 Forum 2019 attracting nearly 200 attendees including senior representatives from 35 leading companies. While the CDKL5 Forum 2020 was held as a virtual, on-line event, the Foundation plans to again return to Boston for a face-to-face conference in November, 2021. The Foundation has also launched the online portal to enable enhanced collaboration by researchers:

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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.