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.

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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…

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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…

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carol-anne partridge

Carol-Anne Partridge

Secretary CDKL5 Alliance and Chair of CDKL5 UK Carol-Anne Partridge, is Mother to Amber who is living with CDKL5 deficiency and is our current Secretary of the CDKL5 Alliance. Carol-Anne is also co-founder of CDKL5 UK and former director of the International Foundation for CDKL5 Research. Aside from CDKL5 UK she represents the CDKL5 Associations…

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Rick Upp

Rick Upp

Chairperson, CDKL5 Alliance & Deputy President, IFCR It is my honor to serve as the Chair of the CDKL5 Alliance for the 2018-19 year. I come to the CDKL5 Alliance through the International Foundation for CDKL5 Research (IFCR). I’ve been active in the IFCR since soon after our daughter Olivia’s diagnosis in 2013. I have…

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