Sue has been the co-founder and chair of Pitt Hopkins UK since 2016. She has three sons, including Christopher, who was diagnosed with Pitt-Hopkins syndrome in 2007, aged almost 16, via a research project. The family lives in the Netherlands.
Sue has a BSc in Mathematics and Education. She was a teacher before starting a family, and co-led miscarriage and breastfeeding support groups for many years.
In 2008, she started the Pitt-Hopkins syndrome international Google support group, together with a mother in the U.S.A. In 2015, she set up the UK Google group and later the Facebook group. Sue is on the board of ePAG advocates for the ERN ITHACA, which is a European Reference Network (ERN). The role of the ePAG advocates is to represent the voice and interests of their patient community and act as bridge between this community and the ERN.
