March TCAID: In Focus - Creative Brain Week
For creative brain week, TCAID led a celebration of brain health in people with Down syndrome. Life expectancy, opportunities, social understanding and general awareness of people with Down syndrome has transformed in the last 50 years. A cause for Joy. But not one that’s uncomplicated – people with Down syndrome have a genetic risk to develop Alzheimer’s. For creative brain week on the topic of Joy, people with Down syndrome talk about the joy of the journey they have made as well as input from leading scientists across Europe on where dementia research is leading and why people with Down syndrome should be included on that journey
The event was hosted by Dr Eimear McGlinchey. Dr McGlinchey is Assistant Professor in Intellectual Disability, Trinity Centre for Ageing and Intellectual Disability, School of Nursing and Midwifery, Trinity College Dublin, Global Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute. Speakers included Mei Lin Yap, Fintan Bray, Members of Brain Buzzers, Dr Juan Fortea, Professor Sean Kennelly and Professor Mary McCarron.
Mei Lin Yap, Ambassador Liaison Officer to the Trinity Centre for Ageing and Intellectual Disability talked about complex joy, the joy and benefits of being informed, engaged, fit and healthy. Fintan Bray spoke about the Importance of Inclusion. Fintan became the first person living with Down Syndrome to be elected to a position within an Irish political party. His election platform was to represent people with a disability all over Ireland, ensuring they get educated and meaningfully paid employment. Fintan told of how he uses his voice and his ability to help other people with Down syndrome. Members of Brain Buzzers talked about their involvement in Brain Buzzers, a virtual social group connecting people with Down syndrome in Ireland and San Francisco to talk about brain health. They also talked about brain health initiatives and research in Ireland. Speaking on behalf of brain buzzers were Megan McCormick, Síle Maguire, Hazel Cogavin, Ross O'Neill and Claire Murphy. Brain buzzer members also sang and daned to their song ‘Don’t Stop Brain Buzzing’ to the music of ‘Don’t stop believing’ and got the whole audience to join them singing and dancing. Members of PPALS braved the bad weather and snow and travelled from the West of Ireland to show the exercises they do to keep fit and healthy to fun music. PPALS is a programme to enable people with intellectual disability (ID) to become physical activity leaders (PALs) in their community.
Dr Juan Fortea delivered a presentation on reasons to hope (expect) a future without dementia in people with Down syndrome. He spoke about advancements in dementia research, the latest neuroimaging and biomarker research in dementia in people with Down syndrome and how we have lots of hope for the future. Dr Fortea combines his research and clinical activities at the Hospital of Sant Pau in Barcelona and the Catalan Foundation for Down Syndrome in Barcelona, Spain. He is the director of the Memory Unit and the founder and director of the Down Syndrome Unit. This unit runs a pioneering population based health plan for adults with Down syndrome in Catalonia. This program is the foundation for the Down Alzheimer Barcelona Neuroimaging Initiative (DABNI), the largest single centre cohort with multimodal biomarker studies to study Alzheimer´s disease pathophysiology in Down syndrome. Professor Sean Kennelly spoke about inclusion of people with Down syndrome in research and clinical trials for dementia, Prof. Sean Kennelly, MB BCh BAO PhD FRCP(Lond) FRCPI is a consultant physician in geriatric and stroke medicine in Tallaght University Hospital (TUH) and Clinical Associate Professor of Medical Gerontology in Trinity College. He is Director of the Institute for Memory and Cognition, and the Cognitive Clinical Trials Unit in Tallaght University Hospital, Dublin. He is clinical director of the National Intellectual Disability Memory Service in TUH. He is co-lead investigator on HRB-funded Dementia Trials Ireland, a national clinical trials network, and is principle investigator on HRB-funded of Dementia Research Network Ireland (DRNI). A fellow of the Royal College of Physicians in London & Ireland, he has extensively published in his main research areas of ageing, brain health, dementia, and Inflammaging. Professor Mary McCarron spoke on Joy and the positive elements of successful ageing. Professor Mary McCarron, PhD RNID RGN BNS FTCD is Professor of Ageing and Intellectual Disability, Director of the Trinity Centre for Ageing and Intellectual Disability (TCAID) and Executive Director of the National Intellectual Disability Memory Service.