Shape research, change lives: setting priorities in genetic syndrome research

I am originally from Milan, Italy. After an International Baccalaureate at the United World College of Southern Africa (Swaziland), I completed a BSc in Psychology at the University of St. Andrews, Scotland. I then read for a PhD in developmental cognitive neuroscience at the Institute of Child Health, University College London. I have been based in the Department of Experimental Psychology at Oxford since 2006, where I am a Professor of Developmental Cognitive Neuroscience. My research focuses on the development of attention, from its neural correlates to outcomes on emerging cognitive abilities. Attention differences are a hallmark of early cognitive development, and many developmental conditions are characterised by attention differences and difficulties. These differences and difficulties may explain some challenges in everyday learning environments, like classrooms. Understanding differences and modifying the environment, to reduce difficulties, requires collaborating with individuals and families that are affected by them. I collaborate with individuals and families with a connection to conditions with a well-defined genetic aetiology (e.g., fragile X syndrome, Williams syndrome, Down syndrome). I also collaborate with individuals and families with a connection to complex conditions of mixed aetiology and neurodivergent communities (autism, ADHD). Ultimately, this work is of interest both to science and, most importantly, to the families and individuals with whom we work.

I completed my PhD at the University of Birmingham in 2022, which focused on the development of teaching practice to support the self-determination of autistic students through a collaborative approach. My research experience includes conducting intervention studies, systematic reviews, action research, and developing a data collection system. I have extensive practitioner experience working in education settings, out of school provision, and in the assistive technology industry. I am particularly interested in research focusing on collaboration with stakeholders, research priority setting, and bridging the gap between research and practice 

I am a BSc psychology student at the University of Surrey, currently completing my placement year as a research assistant in the CoGDeV lab. I will be working on a number of projects, the Baily Thomas project being my primary focus. This placement is a really exciting opportunity to see the behind the scenes of psychological research. It will help me to prepare for my final year at university and to discover where my interests lie within the exciting world of psychology. 

Member of the Williams Syndrome Foundation 

CEO of The White Hills Park Multi-Academy Trust. 

I am also a member of the University of Nottingham Schools and Colleges Advisory Board, the Department of Education East Midlands Advisory Board, and the Nottingham SEND Partnership Improvement Board. I also write blogs at drheeryedublog.com, and wrote one about my experience of being a Williams Syndrome dad:

Values in Action – where rhetoric meets reality – Dr Heery (drheeryedublog.com)

I am a founder member of the charity, Down syndrome training and support service Ltd. She manages the charity and develops and delivers training, early development groups, writes the monthly newsletter, provides home visits, manages projects, writes funding bids and attends meetings to promote awareness of the Charity. 

In addition I am mum to Sam who is 26 and happens to have Down syndrome

When my eldest child was diagnosed in 2007, aged 3, I was desperate to learn as much as possible about this new, unheard of, diagnosis and to share support with families facing the same challenges. I joined the Williams Syndrome Foundation and began connecting families, first as a Regional Coordinator, then as a trustee, and since 2018 as the CEO. The Williams Syndrome Foundation is a charity run by parents for parents and I am passionate about supporting families, increasing resources for families to enable them to better advocate for their children and, increasing the opportunities for individuals with WS to fulfil their potential.

I am a Programme Head at the Nuffield Foundation. I lead the development and management of the research portfolio relating to primary and early secondary education, focusing on children’s skills and capabilities, teaching quality, and educational disadvantage. 

My professional expertise in education research is complemented by her role as Chair of Governors for an infant school in Hertfordshire.

As Chief Executive, Genetic Alliance UK, I am passionate about working together with our member charities and support groups to improve the lives of 3.5 million people in the UK living with genetic and rare conditions. I was previously Chief Executive at the Tuberous Sclerosis Association (TSA), one of Genetic Alliance UK’s members. Prior to joining the TSA, I worked as a consultant advising a range of organisations across the rare disease sector such as healthcare charities, Royal Colleges and pharmaceutical companies. Earlier in my career I worked in-house as Director of Communications and Engagement at the NHS Confederation, and Director of Communications at the National Institute for Health and Care Excellence (NICE). I have been appointed in a personal capacity to represent the rare disease community as a patient and public voice member of NHS England’s Rare Disease Advisory Group and Patient and Public Voice Assurance Group.

Following training as a psychiatrist in North Yorkshire and Edinburgh, I took up a position as clinical lecturer in learning disabilities at the University of Edinburgh in 2008. Within this post I focused on the genetic basis of intellectual disability and the contribution of small changes in the genetic code to increased susceptibility to mental illness in those with an intellectual disability.  I have worked at The Patrick Wild Centre since its opening in 2010, where most of my work, including my PhD, has focused on fragile X syndrome  I am now looking at the use of large datasets to inform health in fragile X syndrome and other conditions.  My clinical work is as a consultant psychiatrist for the NHS Lothian Intellectual Disability Service in South-East Scotland.

Peter Chairs the National Down Syndrome Policy Group, an organisation founded 3 years ago.  The NDSPG comprises people from a wide range of other charities and support groups, all with the common aim of ensuring that the voice of people with Down syndrome is heard in society and reflected in government policy.

 Peter is also trustee and treasurer of PSDS – Providing Support for children and young adults with Down syndrome and their families.  PSDS was established 18 years ago and supports families across Surrey, Sussex and Kent.

I completed my PhD exploring emotional processing in children with ADHD and Conduct Disorder at Cardiff University before taking on the role of Child Development Fund Manager at the Waterloo Foundation. I am responsible for developing and managing our research portfolio which is primarily interested in understanding the developing brain. Through this work we have a specific interest in understanding neurodevelopmental disorders, their common cooccurrences and ways in which we can help children and families thrive.  

Becky is a speech and language therapist who specialises in children and young adults with Down syndrome.  Following qualification Becky worked at Down Syndrome Education International for 4 years. In 2011 Becky started the independent practice LETS Go! whose team provide a comprehensive range of services developed to support children and young adults with Down syndrome, their families and professionals working with this client group. At the beginning of 2024 she joined Down Syndrome UK (DSUK) as their Director of Education and Speech and Language Therapy. 

Becky is committed to promoting evidence-informed practice, and is involved in a number of research projects across speech, language and education issues associated with Down syndrome. Becky completed her PhD in 2023 at University College London, which involved developing and evaluating a language intervention for children with Down syndrome. She is currently working on a research project at the University of Reading, evaluating a parent delivered language intervention for preschool children with Down syndrome and she is chair of RCSLT Down Syndrome Clinical Excellence Network.