Gillian Suzanne Townend

In November 2022 I took up my current post as Senior Lecturer in Speech and Language Therapy at the University of Huddersfield. This is in collaboration with Rett UK, where I have been project lead for Communication and Education Support since 2018. I also continue to hold a position as a (zero hours) researcher at the Rett Expertise Centre Netherlands at Maastricht University, having worked there on a part-time research contract from March 2013-September 2022. I am a Speech and Language Therapist (SLT) with longstanding clinical and research experience, particularly in the field of Augmentative and Alternative Communication (AAC) and Complex Communication a needs (CCN). In 2019 I was awarded a PhD by the University of Maastricht, for a thesis entitled: Rett syndrome: Recognising the communication challenges, needs and potential of individuals living with a rare disease. My research interests are broad. From 2016, I led the project team behind the development of the Rett Syndrome Communication Guidelines (with funding from the International Rett Syndrome Foundation, IRSF). The English-language version of the guidelines was published in March 2020 and I am now working with many countries to translate the guidelines into other languages. Other areas of research include the development of alternative methodologies for assessing language and cognition; development of self-report quality of life measures for people with Rett syndrome (PwRS) and other CCN; eye tracking and the functional use of eye gaze for communication; early (pre-diagnosis) development in PwRS and other CCN; development of telehealth and teletherapy; and rare disease policy and its implications for people with rare genetic diseases. Over recent years I have been keen to develop national and international clinical and research-based networks and collaborations. I am co-founder of two networks for SLTs who work with PwRS (UK and NL), one for physios (NL) and one for educators (NL). These networks have been developed in collaboration with the Rett parent associations in each country (Rett UK and the Nederlandse Rett Syndroom Vereniging). In the UK I have also helped to develop a network of Regional Communication Champions who support PwRS and their families. I am also Chair of Rett Syndrome Europe’s Scientific Advisory Board and work closely with the IRSF.