HEROES partners from UK organized and participated on several activities in the World Down Syndrome Day. This is the third year that the LonDownS Consortium celebrates World Down Syndrome Day with a science communication event for people who have Down syndrome, their families and carers. The event, hosted in the state-of-the-art Francis Crick Institute in London on 21st of March , had three goals: to thank people with Down syndrome and their families for taking part in research, to update them on the progress that our research has made, and to ask for feedback on our future research plans.
Many volunteers on the day were members of the LonDownS Consortium. The Consortium is formed of a diverse group of scientists, clinicians and developmental psychologists who have a common goal to understand and develop treatments for the early onset of dementia in people who have Down syndrome. This year we were joined by colleagues from University College London, the Francis Crick Institute and Kings College London, who are working to understand the development of heart defects in babies who have Down syndrome and how this impacts brain development and function, and the changes in learning and memory that arise from Down syndrome.
Some of the volunteers ran different activities such as looking at flies and plants using accessible microscopes, so that people who have Down syndrome could see how scientists study living things. Early career researchers helped attendees make different brain cells with Play-doh to explain how the cells work in the brain and help us think and remember. The team from the Crick organised a matching chromosome cards game and Lego chromosomes exhibit to communicate what trisomy of chromosome 21 is and how we can model this in mice. The LonDownS clinical team helped participants make memory books for things that are important to them. Finally, our colleagues from Kings imaging team used 3D hearts and brains to help people understanding how the heart and brain develop in people who have Down syndrome. Interested attendees were also taken on a guided tour of the Crick’s 2019 exhibition “Craft and Graft” by members of the Crick team.
Other volunteers gave talks about their research: Ms Claudia Cannavo (University College London) talked about cellular changes that occur in Down Syndrome, Dr Rifdat Aoidi (Francis Crick Institute) spoke about heart defects associated with the condition, Dr Ana Baburamani (King’s College London) and Ms Olatz Ojinaga (Birkbeck College) gave an overview about brain development in babies with Down syndrome, and Dr Sarah Pape (King’s College London) talked about the challenges of growing old with the condition. The research talks, chaired by Dr Frances Wiseman, were closed by Professor Andre Strydom (King’s College London) who told the participants more about the LonDownS study and its results.
The highlight of the day, however, was the talk given by James, a young man with Down syndrome who shared his experience of living with the condition. Using pictures to describe his life, James spoke about his childhood and youth, his friends and family that have always supported him, the jobs he has had, his love for rugby, and the importance of religion in his life. James' dream is to be on TV, and everyone could see, as he confidently owned the stage and cracked jokes throughout his presentation, that he has the perfect personality for it! It is not all roses though: James also talked about the pain and frustration of being seen as only his disability, rather than as the person he is.
This is the main point of World Down Syndrome Day, after all: to help us remember that people with Down syndrome are people first of all, capable of amazing achievements, with hopes and dreams as everybody else. And to remind us scientists about the people science works for, and what research can do to contribute to all our lives.