Sangeeta Staley

President and Founder, CDKL5 Canada

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 in Europe by being the Epilepsy Patient Advocacy group (EPAG) representative for a European Reference Network called EpiCare – an initiative which is working to bring awareness and standardised care amongst other things for people living with Rare and Complex Epilepsy in Europe.

Carol-Anne is married to Adrian, and they also have two other grown up children, Nathan and Cameron. She is a qualified children’s social worker and works full time in South West England. Carol-Anne is passionate about supporting families, raising awareness and challenging assumptions – because of her passion she has just started a Master degree in Global Health Policy with the University of Edinburgh (distance learning) in a hope this will further enhance the experience of families and patients living with CDKL5 deficiency.

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 served on the IFCR board of directors since 2016, currently in the role of Vice President. Prior to joining the board, I served with my wife Cynthia as Regional Family Representatives for the IFCR–US West Coast (Cynthia continues in that role).

Cynthia and I live in Spokane, Washington (US) with Oliva (16) and Isaac (15). Our oldest daughter, Emily (28) is a licensed care provider for Olivia and lives with, as well, as does our other son, Ethan (20) when he’s not in Seattle at the University of Washington. Our other daughter (yes, that’s 5 children in total!), Amanda (26) and her husband also live in Spokane.

Although my education was in French literature (BA, Reed College, 1984; MA, University of Washington, 1987), I have made my career in software sales. I’ve been with the same security software company for over 20 years. One thing that both my career and my involvement in CDKL5 have in common is the opportunity to travel and work with people from many countries. I am pleased to be able to work with so many people who share my single focus: finding treatments and eventually a cure for this condition.