Chairman & Trustee
I have rejoined SDS UK as a Trustee having been involved in the charity as chair several years ago. I would like to see the charity develop further and am looking forward to working with the other Trustees to achieve our targets. I am committed to improving family links and communication between the charity and SDS families, and work closely with our Medical Advisory Board to improve clinic facilities for adults. I would urge more volunteers to join us; in particular welcome anyone who would like to help us fundraise - as a small charity, our success relies on having finances to achieve our goals.
My daughter Poppy is 4 years old and was genetically confirmed with SDS when she was 8 months old. We live in London and I am the primary contact for newly diagnosed patients and families. I’m passionate about supporting research into new therapy areas and gathering patient data.
Secretary & Trustee
My reason for being a Trustee is that I have an adult son called Harrison who has SDS and have first hand experience of the effect SDS can have on an adult patient and their family. My role and focus with SDS UK is to help provide much needed support to adult patients and to work with the Medical Advisory Board to set up a ‘much needed’ adult clinic.
With special thanks to Pete Philcox for maintaining our database