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Ribbon cutting at the UCL UK DRI facility
Shaheen Larrieux cuts the ribbon

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The UK Dementia Research Institute (UK DRI) will bring together over 700 of the world’s dementia research leaders across six sites encouraging collaboration, innovation and providing the largest boost to the field of dementia research we’ve ever seen in the UK.

The momentum of the UK DRI and the potential impact on dementia research was certainly felt at the opening of the Institute's headquarters at University College London (UCL) on 19 July. In this post, some of the people affected by dementia who attended share their impressions of the UK DRI and what it means to them.

Since the hub's location was agreed back in 2016, a huge amount of effort has gone into refurbishing labs and filling them with researchers. As the ribbon cutting took place in the cutting-edge new laboratory space, Professor Nick Fox, Associate Director of the UK DRI at UCL reflected “this is the beginning of the end to dementia, we will look back at today and see this as the start of a change”.

Alongside researchers and representatives from the major funders; the Medical Research Council, Alzheimer’s Society and Alzheimer’s Research UK, stood another group of people who play a crucial role in dementia research. Shirley Nurock and Paul and Kathy Gill, members of Alzheimer’s Society's Research Network, and Shaheen Larrieux, an Alzheimer’s Research UK Champion attended the opening, representing people affected by dementia.

Paul, Kathy and Shaheen are no strangers to the UK DRI, having formed part of the lay panel that interviewed and helped select Professor Bart de Strooper as UK DRI Director back in 2016.

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Seeing a better future

Shirley Nurock has been a passionate advocate of research and has used her experience to help guide and advise research for nearly 20 years.  

Shirley said: “Attending the opening event at UCL it was good to see, and hear, from funders and other key individuals about what is already taking place and what the future direction of the Institute will be. It was inspiring to hear from those who have worked so hard to make it happen, including Professor Nick Fox whose dream it was to set up such an institute. His excitement on finally seeing this dream realised was obvious.

I, for one, am cautiously optimistic that the UK DRI will one day deliver the treatments that families affected by dementia so desperately need.”

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Dr Carmelo Milioto visualises DNA
Dr Carmelo Milioto demonstrates how the latest technology helps him to visualise DNA more quickly and easily than ever before.

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A glimpse into the life of a researcher

Both Kathy and Paul, dedicated research volunteers, have been integral to spreading the word about lesser known forms of dementia.

Kathy said: “The visit was uplifting and thought provoking and I began to understand just how much work had gone into instigating this fantastic development, and the part individuals had played in it.  

The highlight for me was visiting the labs and seeing some of the techniques and processes in action. It brings it all to life and has given me a deeper understanding of what is involved. Professor Janice Holton showed us parts of healthy brains and the equivalent in brains with different types of dementia so that we could see the effects of these dreadful diseases, fascinating!”

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Professor Janice Holton
Professor Janice Holton showing brain tissue from the Queen Square Brain Bank.

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Paul added; “Having only had two terms of biology at school, I’ve chosen to share only what I understand and, given I have a frontotemporal dementia diagnosis, what I remember.   

The highlight of our visit to the UK DRI at UCL was looking through a high magnification, high resolution microscope for the first time.  I observed living brain cells and their connections. Thanks to young researcher, Dr Katie Wilson for her patience in explaining what I could see – and politely answering a lot of questions from a novice user.”

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The Dementia Revolution has begun

Shaheen has been inspired by the UK Dementia Research Institute since being on the panel to recruit the Director Professor Bart De Strooper. She said:

“The opening was such a brilliant moment because it was clear to see that research is already happening in the UK DRI and progress is already being made. For people like me, who care for my mum with dementia every day, it provides a vital lifeline of hope that future generations won’t have to experience what we have.

The Dementia Revolution can make such a difference to the institute and it’s inspired me to enter the ballot to run in the 2019 Virgin Money London Marathon. Fingers crossed I get a place!”

UCL is one of six universities that make up the UK DRI, with similar groundbreaking research facilities at the University of Cambridge, Cardiff University, the University of Edinburgh, Imperial College London, and King’s College London. The Dementia Revolution aims to raise £3.5m to help power pioneering research at the UK Dementia Research Institute.

Have you been inspired? Sign up for a Charity Place in the marathon today.