Josephine

Josephine

My daughter, Josephine, is 3 years old. She is loving, sweet, demanding, needy, and the light of my life along with her older neurotypical siblings who are 16, 18, and 21. She was diagnosed with CDKL5 right at her third birthday, which was less than 3 months ago. Our CDKL5 case seems to be very…

cdkl5 forum 2018

Fourth Annual Meeting CDKL5 Forum

On behalf of the Loulou Foundation and our partners from the Orphan Disease Center at the University of Pennsylvania and the CDKL5 Alliance, it gives us great pleasure to welcome you to the fourth annual meeting of the CDKL5 Forum for the advancement of science and therapeutic approaches. This year, the Forum returns to London…

cdkl5 alliance edinburgh

CDKL5 Alliance Edinburgh

The CDKL5 Alliance are proud to present their first International Research and Family Conference which will be held on the 22-23rd June 2019 at the Royal College of Surgeons in Edinburgh. This event is organised by CDKL5 UK in association with the CDKL5 Alliance members. Details to follow.

Maia

Maia is a tall and slender 11-year old girl who keeps everyone around her on their toes at all times. Maia’s seizures started at the maternity hospital, even though they were not officially diagnosed until when she was about 3 months old after tenacious doctor and hospital visits with mum and dad, and several attempts…

Kiera

Kiera is a twelve year old beautiful and free spirit living with CDKL5 deficiency. She lives at home with her mom and dad, and sometimes her equally free-spirited grandfather, who is her best friend and partner in mischief. There’s no one she adores more! To be with Kiera is to be in the presence of…