Introducing Emma Claydon, the new CDKL5 Research and Care Coordinator.
I would like to introduce myself. My name is Emma Claydon and I am the new CDKL5 Research and Care Coordinator for the CDKL5 Centre for Excellence at the Bristol Royal Hospital for Children. You may have previously had contact with my predecessor, Helen Bowden, who left this role last autumn.
Since taking over my role in April I have been working for Dr Sam Amin MSc MBChB MRCPCH, who leads the team at the CDKL5 Centre for Excellence. He works closely as an advocate for families affected by the disorder with the CDKL5 UK charity and is conducting clinical research in the area. I will be working in support of Dr Amin by providing a single point of contact for all CDKL5 related queries, research projects, and providing practical support and advice for parents and carers.
We would love to hear from as many parents and carers of children and young adults with CDKL5 Deficiency Disorder as possible. We strive to support the holisitic care of your child, in partnership with your local medical team by providing specialist clinical input as well as focussed pastoral care and support, in partnership with the CDKL5 UK charity.
I appreciate that your time is precious and as a parent or carer to a child with CDKL5 Deficiency Disorder you have many challenges to face on a daily basis. I do not wish to add to your challenges by placing any demands on you, I would simply like to check whether you are happy for me to keep in touch and support you wherever necessary. If you would like to be involved, or indeed if you are already involved and would like to just confirm your interest, please get in touch with me by e-mailing email@example.com or calling/texting 07596274442. I can then discuss the ways in which we can best support you.
I very much look forward to hearing from you.
CDKL5 Research and Care Coordinator
CDKL5 Centre of Excellence
University Hospitals Bristol and Weston NHS Foundation Trust