In the running to PREVENT Dementia

On 28th May we have 5 teams of four people running in the Edinburgh Marathon Festival ‘Hairy Haggis’ Relay. The 20 people in the teams are members of staff from across the University, international research collaborators (from Belgium) and participants in the PREVENT Dementia project. It has blown me away how engaged everyone is in our work and willingness to run around Edinburgh on a May Sunday afternoon to help raise funds and awareness for the PREVENT Dementia Project.

Our project is the ‘jewel in the crown’ at the Centre for Dementia Prevention in Edinburgh but is not just an Edinburgh study. It actually started life in West London and there are two other centres at the Universities of Cambridge and Oxford. The project is also part of the much larger EPAD (European Prevention of Alzheimer’s Dementia) work and forms a core of our recent international collaboration with Barcelona and the Karolinska (the TriBEKa Consortium). You can see that PREVENT Dementia is a globally important and visible project that is going to make a fundamental difference to how we understand Alzheimer’s disease before dementia develops which will help us develop treatments to reduce peoples risk of developing dementia.

So what is the project and why do we need your help to fund it?

The PREVENT Dementia will recruit about 700 people by summer next year aged between 40 and 59. We have recruited about 300 people already and started publishing some data on the original wave of recruits from London. You may have seen a story in the Observer on Sunday 6th May and an article with further explanation of the results at the Centre for Dementia Prevention website – already we are having an impact on what we understand about Alzheimer’s disease before dementia develops. The 700 research participants will all have detailed cognitive testing, brain scanning and give blood, saliva, urine and spinal fluid (CSF) samples [which is definitely not as scary as it sounds]. They will also fill in lots of questionnaires and their visits last about a day and a half. We are so so grateful for all their support with helping us to help them to answer some critical questions.

A similar project in the US called ADNI (Alzheimer’s Disease Neuroimaging Initiative) cost over $50M to run. So far we have secured just over £1.5M from big grants from the Alzheimer’s Society, the Alzheimer’s Association in the USA and philanthropy. We know we can run this project much more cheaply than in the US but our funding to date allows us to do the baseline and 2 year visits BUT does not give us funding to do any sample analysis (all 2,000 samples are lovingly stored in freezers in Edinburgh) for biomarkers  that really get to the heart of WHAT this disease is doing in the brains of people in the PREVENT Dementia project.

We are planning to launch a big fundraising campaign to support the next phases of the PREVENT Dementia study and get a comprehensive and accurate picture of what is going on in the earliest stages of Alzheimer’s disease. This run is a first step towards that.

We of course are putting in grant applications but all grant funding bodies like the MRC, Alzheimer’s Society and Alzheimer’s Research UK have lots of fantastic projects they support and want to support in the future so we can never expect or plan for them to give us even more money.

You may wonder why your donations are going to the Centre for Dementia Prevention at the University of Edinburgh. This is because the University is an established charity and has all the mechanisms in place to make sure that all the money you donate will go to the PREVENT Dementia research work. We will publish all our accounts on line every 3 months so you can see exactly how much money we have raised and how it is being spent and link this to the research we produce.

I truly hope that you can get involved with PREVENT Dementia and hope you can make a small (though massive also accepted) donation to support our 20 runners (including me) on 28th May!

If you want to know more about our work please drop me a note or contact Anna Borthwick who is the PREVENT Dementia and Centre for Dementia Prevention Research Engagement Manager.

Better stop writing now and get my trainers on as want to make sure my team (Grey Matters) is the fastest of the 5 teams!!!