An Easter tradition

Not what you might think. This has no deep religious significance and isn’t even an ancient folk custom. I’m talking about chocolate crème eggs with knitted covers in the shape of chicks.

I kid you not. Someone many years ago came up with the idea of woollen warmers for chocolate eggs and started selling them for BRACE. They don’t actually warm the eggs, which is just as well, but they are a seasonal chick-shaped covering rather like what people used to put on boiled eggs. Volunteers knit the chicks, which are then introduced to the eggs (and no, I don’t know which came first). They are then put on sale at various outlets and – incredibly – we raise as much as £2,000 from them each spring.

There’s a serious point here. A chocolate egg with a bit of knitting sells for a modest price. Each one is the work of a volunteer who gives time to do things on a very small scale. And at the end of it we have a worthwhile sum for research. Lots of individual effort by people who are doing what they enjoy doing and what they can do, resulting in enough income to buy an item of lab equipment or to pay 5-10% of the cost of a pilot project.

The serious point is that no one is too small to make a difference in the long struggle to beat dementia. If you can only give five minutes or £1, your gift will be added to those of thousands of other people and will count.

Of course, if you can give lots of time as a volunteer or write out a big cheque, we’d love to hear from you too!

Alzheimer's as a gift

An hour of short films about dementia might not sound like a great evening out, but about 250 people thought otherwise. They packed into the Great Hall at the University of Bristol last night to watch seven films collected by local filmmaker James Murray-White. We then had a half hour panel discussion which could easily have gone on for much longer had time allowed.

The films were powerful and sometimes startling. The one that stayed with me most was a rough cut of a film called Thinking Outside the Box by Christeen Winford. Christeen had come all the way from Edinburgh for our films evening, which gave me a rare opportunity to compliment a director about her work. She had also provided a powerful drama called Darkness in the Afternoon, but Thinking Outside the Box was quite different.

In this film, an artist called Edward McLaughlin talks about the art he produced before he developed dementia and what he is producing now. The contrast is striking. He regards his earlier work as “engineering drawings”, though I saw plenty of life in the eyes of his subjects. Since his diagnosis, his art has become bolder and more abstract, filled with powerful colours and startling images. It seems that dementia has changed his perceptions of the world.

Edward is quoted as saying, “The thing I like about Alzheimer’s – and I do say like – is that if you have it, it’s normal to think outside the box. You can look at it as a gift or a curse. I choose to see it as a gift.”

Moving images

Next Wednesday evening is film evening. With the generous hospitality of the University of Bristol, BRACE has organised a series of short films about dementia, lasting about 50 minutes in total and followed by half an hour or so of discussion.

The discussion will centre on a panel consisting of two scientists, a doctor and two filmmakers. With an audience expected to approach 300 in number, there is potential for a lively debate about the issues raised in the films.

This is the brainchild of a local filmmaker, James Murray-White, who has himself made a short film about his experience of being close to someone with dementia. James has put a lot of work into creating this event and identifying films, and I would like to thank him for all that he has done.

We hope that the event will bring together the thoughts of people who approach dementia from entirely different perspectives. Scientists and clinicians are trying to cure or contain dementia in various ways, whereas filmmakers – like other artists – represent the human need to find meaning in pain and emptiness.

Putting them together in this very public way will be an interesting experiment and I look forward to seeing what comes out of it!

The University has very kindly given us a great venue in its most prestigious building and is also supporting us on the evening itself. There is still time to book online and entry is free. If you happen to be in Bristol on 20^th March, why not reserve a seat and join us?

We make a difference

We make a difference, we really do. It’s just that it’s so hard to give a simple answer to the question “what has BRACE achieved?”

This is because we fund research that generally takes years to produce clear results. It builds on earlier research and spawns further research. Everything we support is part of a network of scientific enquiry which bestrides seas and continents and draws on donations from other funding bodies, including governments. It’s therefore very difficult for us to say simply “we did this” without over-simplifying or failing to acknowledge the contributions of numerous others. Yet our supporters naturally want to know that their efforts through us are having an impact.

We know that we are making a difference, but how do we pinpoint examples in a way that makes sense without long screeds about context?

It was therefore great news this week when a major drug trial was announced. It involves the Universities of Bristol, Belfast and Cambridge and will be hosted by North Bristol NHS Trust. It also builds on work that BRACE has been doing for years.

As always, our contribution is part of a wide network, with research supported by other charities and public funds playing a vital part. However, our involvement is quite easy to describe. We have supported research projects at the University of Bristol since at least 2004 that have helped pave the way for this trial. We currently fund the research in The BRACE Centre, itself a BRACE initiative, which will be one of the key locations involved in the trial.

You can read on our website what the drug trial is all about. What matters most is that it has clear potential to bring about clinical benefit for future patients. That’s why BRACE exists and it’s one of those moments when anyone who does anything for us can see that they really are making a difference.

Humbug!

Oh no, surely we’re not talking about Christmas in February! Well, we are, but please read on before you close this page in disgust.

I’m one of those people who like to defer having anything to do with Christmas until December. The endless marketing makes a mess of autumn (and advent, if Christmas has religious significance for you) and drives most of us up the wall. Many of us would cheerfully ban tinsel and 1970s Christmas pop from shopping centres until much closer to the festive season.

So I feel a bit of a hypocrite uploading Christmas card designs to our website when there are still ten months to go.

The reality for a charity – like many shops – is that we have to plan far in advance. Christmas card sales start with our September newsletter and various autumn events, where people expect to be able to buy what they need for Christmas. We therefore have to take delivery of our cards in the summer, and this demands a planning process much earlier in the year.

Anyway, enough of the excuses – this is where you come in. Please. We are asking supporters to help us choose our card designs this year from a shortlist of twenty. If you could go to our online poll and vote for three cards, it would really help us identify what is likely to be popular and sell well. The name of the game, after all, is raising as much as we can for research.

It’s all in a good cause, and such an easy way to do a little something to fight dementia right now.

If it helps, you can mutter “bah, humbug!” as you vote.

A good example

People sometimes ask me what "adopting a charity" or having a charity of the year actually means. I usually start my reply by explaining that there isn’t a one size fits all approach to this. To continue the sartorial image, the arrangement should be tailored to fit the supporting organisation.

What I mean by this is that the fundraising activity should fit with the work of the organisation and not get in the way. The aim is to support the work of the charity, but it should always be a good experience for the charity’s partner as well. It might surprise some that organisations which support a charity in this way generally benefit from the arrangement, both in terms of reputation and staff morale/relationships.

Last year, we had an excellent partnership with IOP Publishing, who took us on as their charity of the year and raised well over £6,000, exceeding even their own ambitions. They were great for us to work with because they clearly enjoyed what they were doing for us and took a real sense of achievement from it.

IOP Publishing’s PR Officer, Alison Hadley, and I produced a short case study, setting out what they did and how we both benefitted. You can read here how both BRACE and IOP Publishing saw the arrangement and how it helped us both.

I hope this will inspire a few others!

A small sign of growing awareness

Watching ITV’s drama Lewis last night, I was surprised when discussion of dementia research cropped up.

This was part 1 of an episode called Intelligent Design. One of the fictional Oxford academics in the story was a scientist who was introduced as having contributed to dementia research. Inspector Lewis asked her about her work on Alzheimer’s, whereupon she widened the definition to include other dementias and started to explain the amyloid hypothesis. Of course, that didn’t last very long – the viewers were signed up for a police drama and didn’t want a long explanation of the chemistry of the brain and different theories about the causes of dementia. It was, however, a strangely heartening moment, another small sign that discussion of dementia is becoming mainstream. It doesn’t matter if most of us don’t know what the amyloid hypothesis is, the important thing is that we can talk about dementia.

By coincidence, the programme’s star, Kevin Whately, is an ambassador of the Alzheimer’s Society.