A good year

2012 might not be over yet but I can already say with certainty that it has been a good year for BRACE.

With the charity sector shivering in the cold winds that are blowing through the world’s economy, most charities are pleased not to be among those that have to report falling income and cutbacks. BRACE has managed an increase in both donations and income from fundraising activities.

This has come at a time when the demand for research funding seems to be increasing. It’s encouraging that the field of dementia research is more crowded than it once was and that new proposals are coming forward all the time. However, this is only a good thing if new ideas can be matched with new funding. During 2012, our Trustees have committed almost £800,000 more to research initiatives. There is no doubt that we shall be asked for a lot more in 2013 and beyond as the search for dementia treatment becomes ever more urgent.

This is not easily achieved in an economic downturn, and we are working harder, longer and more imaginatively to carve out these successes. We are indebted, as always, to the various volunteers and sponsored runners or riders who do so much, but we are increasingly helped by businesses and community groups who raise funds for us.



Fundraising for BRACE. Fishponds GPs raised £'00s and gave us our favourite photo of 2012

The single best way you could help us in 2013 or beyond would be to ask your employer, school, faith group, club etc. to think about BRACE as its next adopted charity.

Oh, and while I think of it, we’re on the ballot for a donation from a company in London. If you read this before New Year, there should still be time to vote for us. All you need to do is go to the web page and click next to our name. Thank you!

By any other name

I am a follower of Beth Britton’s excellent blog, D4Dementia and was struck by the issues she raised in her post of 21 November.

This concerned moves by the American Psychiatric Association to rename dementia “major or minor neurocognitive disorder”, or NCD for short. I won’t repeat great chunks of Beth’s eloquent article, which you can still read in full by clicking on the link above (but please come back here when you’ve finished!).

Things are sometimes renamed as a way of sanitising their reputation, such as when Windscale became Sellafield. No one was fooled; it was still a nuclear power plant with the dubious distinction of the worst nuclear accident on record until Three Mile Island happened.

However, no one is trying to “sell” dementia or convince us that it’s not dangerous. The motive appears to be sensitivity about stigmatising sufferers. If so, it’s a worthy motive, but one that might be unhelpful outside specialist academic and clinical circles.

It’s worth reminding ourselves what “stigma” actually means. It comes from a Greek word to do with marking or branding, and stigmatising usually means marking someone for disgrace or disapproval. That is clearly not something we want to happen to people with dementia, though we recognise that it always has.

In Catholic spirituality, however, having the stigmata – the wounds of the crucified Jesus – is a mark of honour and often sainthood.

In other words, it is up to us how we look at someone who is marked. If someone carries the mark of dementia, what emotions and actions does it prompt in us? Fear, denial and a tendency to shun and put out of sight? Or, as Beth says, could it prompt “care, compassion, kindness, understanding, fairness and opportunity”?

Calling dementia NCD won’t take away its cruelty. The word “dementia”, which comes from a Latin root and has to do with losing one’s mind, reflects the pain of the experience of dementia. Changing to the rather more aloof NCD won’t make the experience any less cruel for either the patient or those close to them.

There’s another issue. Organisations like the one I manage have been trying to raise awareness of dementia for decades. I worry that a change of name will mean a lot of work and missed opportunity as we try to make people aware that NCD is the same as dementia and that Alzheimer’s is still the main cause.

Which brings me to my final point. There has been an entirely unplanned drift towards treating dementia and Alzheimer’s as synonymous. They are not, of course. Dementia describes a group of symptoms that can be caused by one or more of a range of diseases, more often than not Alzheimer’s disease. This common usage has been picked up by many organisations, including the biggest dementia charities in the UK and, of course, BRACE. This is because we have to communicate with people by using the words that they use.

You will see BRACE collectors wearing sashes with the word “Alzheimer’s” in large red letters. People give to our collections because they identify with this. Some, who have had experience of a different cause of dementia in someone close to them will come over and ask “do you do research into vascular dementia?” (or another form), to which we can reply “yes”. Our strapline says “funding research into Alzheimer’s”, but we also fund current research into vascular dementia, fronto-temporal dementia and dementia with Lewy bodies. This could be extended into other causes of dementia.

Don’t expect to see our collectors wearing sashes with “NCD” emblazoned on them. We don’t plan to baffle the public.

New research and a very long swim

The two most recent news stories posted on our website show something of the variety of our work, what we (and others) do to raise and money and what we spend it on.

On the one hand, there is the announcement of a £178,000 grant to Dr Vasanta Subramanian at the University of Bath. This is actually the fourth grant we have awarded to Bath this year, supporting varied and vital research.

Vasanta’s research uses the latest knowledge in stem cell research to replicate brain cells and track the effect on them of fronto-temporal dementia. These are adult stem cells, developed from skin samples.

The project also represents an extension of BRACE-funded research into a different form of dementia. Other research already funded by the charity focuses on Alzheimer’s disease, Lewy body dementia and vascular dementia.

This follows the previous day’s news story about Bryony Wood. Her great grandmother has dementia, so the cause is very personal to Bryony and her family. She is a pupil at Bradley Stoke Community School and decided to help the school’s fundraising for BRACE by swimming three miles.

That’s a very long swim, especially for those of us who feel a sense of achievement if we make it to the other end of the pool. Bryony managed no fewer than 216 lengths, despite being disrupted by some other swimmers.

I applaud Bryony for her commitment and sheer endeavour. She can be sure her part in the fight against dementia will count, because it’s the swimming, the running, the cake-making, tin-shaking and all the other fundraising that makes the work of people like Vasanta possible.

What's in a name?

People often ask me what BRACE stands for. The answer always involves a brief history lesson and a realisation of just how far we have come in the last quarter of a century.

When the charity was founded 25 years ago, the founders decided to call it Bristol Research into Alzheimer’s and Care of the Elderly. This would have been a bit of a mouthful, so they wisely decided that it would be simpler to say “BRACE” for short.

A lot of charities and other organisations have acronyms and they have their uses. They also have their drawbacks, and growing out of them is one such example.

That’s a positive, of course. In the time we’ve been operating, we have come a long way and can no longer be defined just by our roots.

Bristol – yes, that’s where it all started, but we are now a regional charity. Our HQ is in South Gloucestershire and we are working with supporters around the West Country, from Devon to Wiltshire. We are also gathering supporters from elsewhere in the UK, from Liverpool to Brighton. We even had a sponsored runner in Australia this year, albeit one who hails originally from this region.

After all, the cause we are part of is global.

Research – no argument here. We only fund research. “Alzheimer’s”, however, has to be treated as synonymous with dementia, which is becoming the norm nowadays. Other dementia charities also tend to say “Alzheimer’s” when they actually deal with other forms of dementia as well. We currently support research into Lewy body dementia, vascular dementia and fronto-temporal dementia as well as Alzheimer’s disease.

The “Care of the Elderly” bit is mystifying unless you know the history. BRACE was originally formed to fund research in the Department of the Care of the Elderly at Bristol University. That department disappeared several years ago, but Bristol University has a formidable dementia research programme and is still the single biggest recipient of BRACE support.

However, the last five years have seen a significant expansion of research into the Universities of Bath, Cardiff and the West of England (UWE). The charity’s policy is to fund research only in the West Country and Cardiff, which is what gives BRACE its distinctive regional identity and has enabled it to help build up a strong research network in this area.

So there you have it, the full story behind our evolving name. BRACE, the dementia research charity – simple. Now go and tell your friends all about us!

Next year the past

Like many charities, we sell a range of goods to help raise funds. Perhaps the most appropriate for a dementia charity is our “More Memories of Bristol” calendar 2013.

The title reflects the fact that we had a Memories of Bristol calendar in 2011, using thirteen previously unpublished photos of Bristol from about 1950 onwards. They were all the work of local photographer Geoff Packer, whose family kindly made them available to BRACE to help raise funds. We are very grateful to the Packer family for giving us the opportunity to use a further thirteen photos from Geoff’s collection for a 2013 calendar.

I think this calendar has a better selection of photos than the 2011 version. Most of the pictures date from the 1950s, but it’s a bit of a shock for me to realise that I’m old enough to identify with at least one picture of Bristol’s past. It is dated 1973, and I remember running across that zebra crossing after school to catch the number 87 or 88 at that bus stop. Some of the photos include strange details, such as cars parked in places where they would now cause a major incident, or buildings now hidden behind later construction which were then in plain view.

It’s a little gem for anyone who has any memories of the city from the 1950s or the early 1970s.

Redcliff Hill 1956 (October's photo)

The reason it seems appropriate is that dementia is very much about memory. Not just about memory, of course, but the loss of it is perhaps the cruellest part of the disease. The world we see in the photos is the world that older Bristolians with dementia once knew, remembered long and then started to lose piece by piece. In cases where the patient is struggling to make new memories rather than remember the distant past, this might be the city they still see in their mind’s eye. Whatever the reality in any individual case, the symbolism is poignant.

We couldn’t risk having unsold stock at the end of 2012, because few things date faster than a calendar after 31^st December. We therefore only printed 600. They are selling rapidly, but there are still some left. If you are interested, more information is available on our website shop page.

A glimpse of what we do

This was the week BRACE finally arrived on YouTube. We uploaded some films taken by volunteer filmmaker James Murray-White at the public meeting we held in Frome last month.

A meeting is not the most visual of activities, but James did a great job filming the event and then editing the films and slotting in slides from the presentations. We had well over 70 people in the room, and they heard some very interesting speakers. All the details are here, including a link to the films.

This highlights one of BRACE’s great strengths. One of the things that make us different – compared to national charities – is that, while you won’t find us on BBC breakfast television, you might well find us in your local community building. In this case we were in Rook Lane Arts Centre in Frome. The following evening we held a very similar meeting in The Guildhall, Salisbury. We send speakers, including me, to schools, Rotary Clubs, the WI, church groups and others who invite us.

This makes us stand out as a charity which can engage the public in a very different way. Staff, Trustees and volunteers from BRACE attend dozens of meetings of this sort every year and arrange gatherings like the one in Frome. And as the films show, we are quite often able to bring the public into contact with the researchers themselves.

YouTube makes globally available what was truly local. You might say that the same is true of everything we do – global benefit from all the hard work done in a rather more limited geographical area.

Make us your charity

One of the forms of help we most need is “adoption” as charity of the year or a special event.

The group adopting us might be a business, school, college, faith group, social club, sports club or whatever, but the essential facts are the same. The group raises money by doing things that it enjoys doing and gives it to BRACE. We gain extra funds to put towards research and the overheads are negligible. The people who do the fundraising have a good time and know that they have made a difference to a cause they care about. For a business and for most other groups, the benefits of being seen to help others are considerable.



Fishponds surgery staff, who have raised £'00s this year



We’ve seen a big increase this year in the number of groups raising funds for us in this way. Our Silver Service campaign has been especially effective, with IOP Publishing and East Clevedon Churches topping the list of fundraisers so far.



We are looking for new supporters for 2013. Good news came yesterday from a golf club which has made us its charity. Could your place of work, study, leisure or worship support BRACE for a while and help us beat dementia?

At least we're talking about it

Today’s Daily Mail contains the rather depressing news that a third of us are still scared of talking to someone with dementia. The article then takes a more positive turn by including some basic advice about how we should to talk to people with the condition.

On the face of it, it might appear that we haven’t moved very far in our attitude. However, this is clearly not the case. Dementia has been moving into the light, slowly and painfully, for a very long time. It’s no longer a case that “granddad’s gone a bit funny” – no, granddad has dementia. There’s a much greater level of awareness that dementia is a disease, not something as inevitable in old age as wrinkles.

That doesn’t make life any easier for people who are neglected or isolated right now because they have dementia, however. Tackling this problem isn’t one for the scientists that BRACE supports. The problem lies not in the pathology of dementia but within us. How do we overcome our fear?

We first need to recognise that we are afraid. Dementia is reportedly the medical condition that frightens most people. Perhaps this is because it’s currently incurable. Perhaps it’s because it attacks what it means to be human – identity, relationship, a sense of having and being part of a story. Dementia appears to us to be a long and increasingly dark tunnel that leads inexorably to death. We fear to approach it.

And yet, as the Daily Mail article reminds us, sufferers can have a reasonable quality of life. It’s up to the rest of us to understand that and make sure that we are part of the good things in their world, not contributors to a growing isolation.

At least we are talking about dementia as never before. Giving it a name – or a range of names – has helped enormously to make that possible. There is an ancient belief - found, for example, in the Bible – that naming something gives us power over it. This is true of things that we fear, and scientists like Alois Alzheimer have helped us all.

The more we learn and the more we talk about dementia, the better we shall be able to deal with it.

Thirteen times thirteen

Sunday was Half Marathon day in Bristol. Twelve people ran for BRACE and we then discovered that another runner had run to raise money for us but didn’t tell us until afterwards! A welcome surprise on a Monday morning.

The thirteen each ran about 13 miles (a half marathon is 13.1094 miles, I am reliably informed) and that’s a fair distance to run if you’re not used to this sort of thing. Many of the people who undertake this sort of thing for us are attempting a long distance run for the first time, and there were certainly first timers among this year’s runners.

We are supported by a real mix of people, too. A wide range of ages, both genders, all sorts of jobs and none.

We heartily thank all of them for their exertions and their fundraising efforts. Thanks also to Demi, Louise and Reuben for sending us photos and stories.

Demi is a researcher funded by BRACE, working on the role of dopamine in memory. Originally from Canada, she now finds herself pounding the streets of Bristol with her friend Ruth to raise money for new research.

Louise, a café manager, also ran with a friend – Abi – and they raised money to be split between three charities, including BRACE. Their total looks set to pass £2,000. What a great effort.

Reuben was really enthusiastic afterwards. He emailed to say, “I feel great. The run was fantastic! Loads of people lined the streets and cheered. I saw quite a few BRACE runners! It was a fantastic experience so many people running for all kinds of reasons.”

A few words in a blog are scant thanks for all the work these and other runners put in. I hope their real thanks is the knowledge that they have made a difference in the long, slow slog that is the fight against dementia.

If you want to sponsor any of the runners retrospectively and can't find their fundraising page, you can donate via the BRACE website and leave a note of the runner's name.

A blog you really should read

We held a public meeting in Frome last night to help foment discussion about dementia care and research. We have a similar meeting arranged for this evening in Salisbury.

It really was great to see so many people there. We were hastily raiding the chair store five minutes before the start, because it was obvious that we had underestimated the turnout. A couple of BRACE-supported scientists gave excellent presentations and there was a presentation about care home design from the CEO of Gracewell Healthcare.

The other contributor was Beth Britton, a blogger from Oxfordshire, who will be with us again in Salisbury. We have been in contact with Beth for months and it was a pleasure to meet her at last. I think everyone at the meeting admired her bravery in standing up to talk about the still recent loss of her father to vascular dementia and the 19 years that she and her family spent caring for him as the illness took its inexorable toll.

Beth’s passion for the cause is beyond doubt. She is well placed to articulate the way many families feel, including anger at the poor standards of care to which patients are so often subjected. The response she received from members of the audience showed that her words had resonated with others facing similar challenges.

Beth writes a great campaigning blog called D4Dementia and I recommend it to anyone who feels strongly about dementia.

Surrounded by boxes

The state of my office at the moment reflects how much is going on at BRACE. It gives a hint at the many ways people can help us in the fight against dementia.

I have boxes of items to be taken to the meetings we are holding in Frome and Salisbury next week, and a third for an all-day event next Friday where we are the supported charity.

There are then more boxes, this time containing our 2013 calendar, one of which I have to take to St Mary Redcliffe Church in the morning.

Clogging up a bit more of the room is some computer hardware that we were kindly donated by Bristol University. We’ve started to replace our ageing computers and the university has helped us with the first two. We are on the lookout for more.

Just before I typed this, I posted a link on our website telling people how they could help us by sending mobile phones or printer cartridges for recycling.

Then a colleague came in with a query about the registration deadline for the Bristol Half Marathon on Sunday fortnight. (It’s still worth contacting us over the next 48 hours if you want to run – we have a couple of Gold Bond places left.)

There’s a lot more than this going on, of course, but the last few minutes and the temporary congestion in my office just shows how easily you can help us. Come to a meeting, ask your employer to support us at an event, buy a calendar, run for sponsorship or just donate your old mobile. For even more ways, have a look at our website. If you want to help, we can make it possible.

Are we nearly there yet?

It’s funny what makes connections sometimes.

As I was driving home yesterday, I had to stop in a narrow road while a harassed mother shepherded her very young children into the front and back seats of her car. She came over and apologised but I told her not to worry – I’m a parent too.

For some reason I then remembered driving to France for our holiday nine years ago. We had travelled a whole four miles when a three year old voice piped up from the back seat, “Are we nearly there yet?”

Which in turn made me think of dementia research (“Eh?” I hear you say). Most of us are in the position of small kids in the back seat, knowing that we started moving what seems an age ago, but we don’t know how close we are to arriving.

The difference between this journey and our drive to France is that we knew how many miles we had to go and, traffic jams and ferry cancellations aside, had a pretty good idea how long it would take.

No one can tell us how long this journey will take, but the scientists – the navigators – are giving us some clues. Research hasn’t been driving in circles for decades; it really has started to get somewhere. We know far more about the causes and are developing new ways to diagnose dementia earlier. There are some limited treatments available now that weren’t available when BRACE was founded.

And when a respected scientist goes on public record to say that he believes we will have treatments that will slow or even stop Alzheimer’s in ten years or so, I take him seriously.

Those who started this journey had less reason than we have today for confidence that we will reach our destination. Because they took the risk of failure, we now have far more reason to be hopeful, even if precise details of arrival time and exact location remain elusive. Whether or not we are nearly there, we’re on our way.

It’s all happening… next month

September is World Alzheimer’s Month. This peaks on 21 September in the form of World Alzheimer’s Day. And, as if we won’t have had enough by then, BRACE will be 25 years old three days later, the anniversary of the charity’s registration back in 1987.

BRACE is having a celebration on the eve of its own silver anniversary, with a sparkling reception and musical entertainment at the Tobacco Factory in Bristol.

However, our priority is to get over the message that the fight against dementia is one that can and must be won. The two key events in this effort are “Question Time” style discussions to be held in Frome (19 September) and then Salisbury (20 September).

We shall be supported in this by three researchers whose work we help to fund, Dr Andrea Tales, Dr Rob Williams and Dr Myra Conway. We are also indebted to Beth Britton, whose passionate blog on the subject of dementia makes for compelling reading. The panel is completed by Gracewell Homes, who can speak with experience about providing care for people with dementia.

If you happen to live near Frome or Salisbury and are interested in coming along, please send me an email.

Give us your memories!

We have a special memories page on our website. It’s still quite new and, because we haven’t done much to publicise it yet, little used.

Its purpose is to invite people to record the memory they would least like to lose to dementia. All contributions are recorded anonymously, using just the contributor’s initials. All contributions are moderated to make sure they don’t include anything they shouldn’t, so they will remain free of spam, for example. They are short – maximum 200 characters.

We hope to build up some activity on this page as we approach World Alzheimer’s Month, an event which happily coincides with BRACE’s silver anniversary.

Why not contribute a memory of your own? You will be helping remind others what we are fighting for. Thank you.

I've a feeling we're not in Kansas any more

You might well be nonplussed by the familiar quotation from The Wizard of Oz. After all, BRACE is a regional charity in the English West Country and has never operated in Kansas.

Imagine my surprise, therefore, when I found that the automatic Google Maps link for our annual Autumn Fair was directing supporters to a field north west of Coffeyville, Kansas. How it managed to interpret “Newman Hall, Westbury-on-Trym” as meaning a rural corner of the American Midwest, I have no idea. The problem has been fixed, though it was always unlikely that anyone was going to turn up on a Kansas farm looking for our fair.

It made me reflect again on what being a local or regional charity actually means. Many charities that describe themselves in such terms spend money on local community projects and are in every sense local. BRACE is firmly regional in that it spends all its research funds within the Universities of Bristol, Bath, Cardiff and the West of England. In so doing, it has maximised its influence and helped to build up an internationally respected network of research scientists fighting dementia.

However, when it comes to raising funds, we increasingly attract support from much further afield. There’s even someone running for us in an Australian marathon this month. That’s the beauty of the Internet.

As for our “area of benefit”, it really couldn’t be more global. The people of Coffeyville will one day benefit as much as the people of Westbury-on-Trym from the work that BRACE-funded scientists are doing. We just can’t provide a cake stall and raffle for them in October, which is why it’s as well that Google Maps doesn’t have us in Kansas any more.

Phil's feat of endurance

I’ve written before about the remarkable things that some people do to raise money for us. Take Phil Semple, for example.

We could scarcely believe it when we heard how far Phil had run – 120km! That’s 75 miles, and all in twenty four hours.

Phil works for IOP Publishing, who have adopted BRACE as their charity of the year and are setting the pace when it comes to fundraising. He entered the Endure 24 race last weekend and dedicated his fundraising to BRACE.

Phil said of the run, “In my mind the Endure 24 race would be relatively straightforward, run a 5 mile lap, rest a few hours, run again, rest etc. In reality it was quite brutal, the rests weren’t as long as I’d hoped for, the course was very tough woodland trail, and my legs keep stiffening up after each lap.

“The race itself consisted of 10km laps (6.25 miles) through an undulating mixture of grass and woodland terrain, unlike the usual flat and smooth road surfaces that I am used to. The first lap was over quickly and as usual I was caught by the false sense of thinking that I was going to feel this fresh all night. Having completed a second lap I quickly realised that after 12.5 miles, my joints were showing the first signs of fatigue and that I was going to have to plan some kind of alternating walking/running strategy. Leading up to the end of my 8^th lap and 50^th mile at around midnight my blood sugar had gone down rapidly (as had the temperature) which triggered the usual dizziness and shaking so I was lucky to find someone with some spare energy gels which enabled me to finish the lap and get some much needed rest and food.”

Despite soreness, aches, cramp and blisters, Phil kept going. Falling over roots did not help, but he was able to take some refreshments during his short breaks. He even borrowed a walking stick to help him through the final few miles and an emotional crossing of the finishing line.

Well done, Phil. A remarkable achievement. I feel I ought to add a warning about not trying this at home, because not everyone’s body could stand the strain. If 75 mile runs aren’t for you, there are plenty of less arduous things that you could do to help us fight dementia.

Pedalling furiously

One of the most pleasant parts of my job is going along to meet people who have raised money for BRACE and to receive a cheque from them. The cheques are nice to have, of course (quick mental “kerching” as I picture the research fund mounting) but the real pleasure is meeting people. People who do remarkable things because they want to help someone.

On Monday, I was invited to Chipping Sodbury Rotary Club to receive a cheque for £1,220. The money had been raised by three members of the club, Tony Sarafian, Iain Dunnett and Bill Bennett, who cycled all the way from John O’Groats to Lands End. This would be an impressive feat for most of us, but is all the more so when you consider that their average age is 72. Another club member, Richard Kingscott, then organised sponsorship and achieved a total of well of £3,600.

As a result, BRACE, local MS charity BrAMS and a local scouts and guides group all received generous cheques (and a warm welcome from the members). This is a great effort and we are very grateful to the cyclists and the Rotary Club generally.

With so many people struggling financially, we are having to work much harder and be smarter in order to raise the same level of income. We are all pedalling furiously, some literally and most of us metaphorically. We can do no other – dementia research isn’t going to become less urgent just because there’s less money about. So, if you’re a keen cyclist and want to generate money for charity through your pedal power, please give us a bell.

Young people care about dementia

This statement may or may not surprise you, but it’s not the traditional image of dementia charities. The reality is that young adults and even children often know the pain that dementia can cause because someone in their family has it.

We are attracting more and more young people who want to take part in sponsored events. We had our best ever London Marathon this year and are currently recruiting runners for the Bristol Half Marathon. There are many other sponsored events that our supporters sign up to and some of them even go it alone.

We are engaging more with secondary schools, and feedback suggests that many of their pupils identify with what we are doing because of a grandparent or elderly aunt or uncle who has dementia. Last year, we had great support from Bradley Stoke CommunitySchool, who sent a small group to meet BRACE-funded scientists and then raised £520 over two days. Last week, I went to Orchard School in Bristol, accompanied by Laura Palmer (Manager of the SW Dementia Brain Bank) to give a presentation. They, too, are determined to support BRACE this year and I know that the cause has personal significance for some of their students.

It is great to see younger people, including teenagers, taking up this crucial struggle. It is they, rather than today’s elderly people, who stand to gain most from current research. However, old age seems a long way away when you are in your teens or twenties, and it is clearly compassion and sometimes the pain of loss that drives them, not anxiety about the risks they may face in later life.

Speaking for us

BRACE is fortunate enough to have several volunteer speakers who give talks about the work of the charity. They respond to requests from community groups, churches, schools and others who want a guest speaker for one of their meetings.

Each speaker will give talks in their own way. As well as five volunteers with different experiences to contribute, we are helped by two of the scientists we support. Finally, there’s me.

This week saw our annual “speakers’ update”, where we arrange a special meeting with one or more of the researchers. However, all the speakers are kept up to date through mailings and occasional one to one meetings.

Different groups want different sorts of talks and the range of speakers on our list enables us to meet the requirements of the various groups.

If you are in the former County of Avon or close to it and want a guest speaker, why not think of BRACE? Details are on our website.

Vicky's run

We are hugely grateful to all the people who have entered sponsored events for us recently. There seems to have been a marked increase since last year, a sign that more and more people are noticing BRACE and wanting to support our work.

One of the most recent runners was Vicky Ledbury. Vicky had already run for BRACE in the 2011 London Marathon but wanted to carry on supporting us. She entered the BUPA 10k last weekend, a shorter run which used part of the planned route for the Olympic Marathon.

I asked Vicky if she could tell us something of her experience, and this is what she wrote:

“I was honoured to be able to run the BUPA London 10k on Sunday 27^th May to raise money for BRACE.  I wanted to be able to support the work that BRACE does as my father in law was badly affected by dementia in the last months of his life, and it had a profound effect on our family.

“It was a scorching hot day in London, and was described by some as like running in an oven.  They weren’t far wrong!  It is a great event, and gave me the opportunity to do some sightseeing as well as some exercise!  The last event I’d done in London (also for BRACE) was also a very hot day so Joe must have been watching down on me to make sure I was earning every penny of sponsorship!  Thinking of him, and knowing that the money is going to such a fantastic cause, kept me going all the way round.  Even though I was slower than I hoped it was a great feeling to cross the finishing line and look up at Buckingham Palace.  I also got to cheer on Mo Farah on his way to winning the race and that was a real highlight!”

Many thanks, Vicky, for your determination to support BRACE in this way and for the money you raised on Sunday.

"A golden age"

Forgive my repeating this if you’ve already read it, but it’s just too good to miss!

When The Post (formerly the Bristol Evening Post) interviewed Professor Seth Love at the end of last week, he said two really important things. First, that he believes dementia research in Bristol to be entering a “golden age”. Second, that none of this would be happening were it not for BRACE. It’s well worth reading the full article.

Seth Love is a senior figure in Bristol University and in dementia research. Furthermore, while being independent of BRACE, he advises our Trustees on scientific matters and knows well what the charity does. He is therefore well qualified to say what he did.

This isn’t about the charity feeling smug and wanting everyone to say how wonderful it is. Something more important (and far less annoying) is apparent here. It means, first, that the research that is happening in this region is growing in importance and effect. It also means that everyone who has helped BRACE is making a difference in the global fight against dementia.

If you ever wondered whether it was worth running that marathon or helping at that cake stall, now you know!

One of the things that make us different

It was our Annual Meeting on Monday evening. I know, it sounds rather dull – an AGM, yawn.

But the BRACE Annual Meeting isn’t an AGM. We don’t have shareholders or anything like that, so there’s no formal business. No elections, no arm-twisting to get reluctant volunteers to take committee roles.

Our Annual Meeting involves some short presentations about the charity’s work and a longer talk by a researcher. This year, Dr Liz Coulthard from The BRACE Centre gave a really interesting overview of current research that she and colleagues are involved in.

A large proportion of the people there were scientists of one sort or another – biochemists, psychologists, neurologists – from all four universities where BRACE currently supports research. The rest were mostly volunteers and supporters.

This represents one of the things that make BRACE different. If you support a big national charity, you might never get to meet the people whose work you are supporting. I love seeing our supporters meeting the scientists, asking them questions, finding out first hand what’s happening in the fight against dementia.

Turning that round, one of the scientists came up to me after the meeting and said how impressed he was by all the hard work that was going into fundraising. It made me realise that the encounter was a learning process for everyone.

It’s not every research charity that can bring people together in this way.

We're live!

For the past few weeks, we’ve been working on our new website and it’s now live.

This will make such a difference to our ability to communicate what we are doing and make it easier for people to help us in all sorts of ways. If you like it, please use the social media buttons to tell your friends.

The website was designed by GWS Media in central Bristol, who have given us excellent service over many years.

We are also indebted, as always, to our numerous volunteer fundraisers, who have provided such superb photos. There will be more to come.

That's how to treat a target

IOP Publishing just made my day. They adopted a £500 fundraising target when they opted in to our “Silver Service” 25^th anniversary campaign. Then they set their own target and multiplied the original by ten.

If anything works in fundraising, it’s  a mixture of ambition and cheerful enthusiasm. The IOP staff evidently have lots of both and they’ve made a great start after just one event.

What more could any charity ask for?



A runner's tale

It was the London Marathon on Sunday, and 11 wonderful people donned BRACE vests and ran 26 miles for us. We’ve featured some of them already on our Facebook page, and we salute them all.

One of them was Jo Earlam, who was the first BRACE runner to finish and achieved a personal best time. She did it for her Granny, her Dad and other people close to her who have suffered from dementia. Here, she tells her Granny all about it in an open letter. Thank you, Jo, for the huge effort you have put in for us, and for sharing with us your own moving story.

Dear Granny,

Running the London Marathon for the Alzheimer’s charity BRACE was awesome! I’ve run 10 marathons and raised money before, but this one was different, this one was for you.

It was the most incredible experience, like being on a river of human emotion. Thousands were running for causes close to their hearts, to unwavering cheers and support. When it got really tough you only had to see the messages and photos on shirts to forget your aching legs and carry on.

So many people with so many memories – thinking of loved ones and long hours in training.

I was hoping to crack four hours, to be a “proper” runner! Not quite there, but I did get a PB at 4:05:07, hurrah!

I know you’ll be proud of me just for doing it. You always took pride in your grandchildren. Stephen’s daughter Carly was there, cheering along runners for MNDA, another cause close to our family’s heart.

And so tragic, granny, this year a young girl, Claire Squires, running for the Samaritans died before reaching the finish line. Her remarkable legacy is that hundreds of thousands of pounds have been donated since.

So many good causes – £50 million raised by runners overall. BRACE is one of those good causes and it’s special to have run for it – in memory of you, nanny, John’s mum, and our dear friend Stan. Plus now of course Dad, bless him, with vascular dementia, and my friend Dave, only in his 50s, but also suffering.

That’s why what BRACE is doing is so important, funding groundbreaking research into Alzheimer’s.

When I was a child and you fell ill, I couldn’t give you your memory back. I hope by running for BRACE I can help others keep their own memories alive all of their life.

Still miss you after all these years.

Your loving grand daughter,

Joanna

You don't have to be rich

While the charity world is in uproar about the Chancellor’s proposed tax changes, which might threaten larger donations, BRACE carries on as normal.

Much as we’d like the odd six figure cheque from a wealthy benefactor, our reality is lots of smaller amounts that keep adding up, year on year. People send us small donations or, if they are a bit better off, a couple of hundred pounds. Employees get together in their workplace to raise money, as do members of clubs and faith groups, or students in college or school. Their fundraising could be a few hundred or several thousand pounds. Others volunteer to run in marathons or fun runs or raise sponsorship in some other way.

None of this is of any interest to Mr Osborne, but it all adds up to worthwhile income by the end of the year.

Which reminds me – it’s the London Marathon this weekend and our various runners have already raised about enough to fund half a pilot research project. Good luck to all our runners, who are already making a difference.

Isn’t it great to know that you can make a difference without being rich?

Reasons to see your doctor

A random conversation with a caller at our office yesterday reminded me of the importance of consulting a doctor if you are worried about declining memory or something else that might be a symptom of dementia. She told me of a neighbour who had been showing signs of “dementia” but who had improved markedly as a result of treatment for something else.

It is understandable that people might not want to visit their GP in case they hear bad news.

However, symptoms that might point to dementia, including memory problems, could be caused by something quite different. Thyroid problems, depression and even vitamin B12 deficiency are some of the possible causes.

This is the first good reason for visiting your GP. The real problem might be something treatable. The second reason is that, if it is dementia, having a diagnosis can help you take a greater measure of control and find out about the support that is available. Some patients can be helped for a limited period with existing drugs.

We hope that current research, including what BRACE funds, will eventually equip the medical profession to help everyone who comes forward with dementia.

An odd mixture, but this is what we do!

Today we’re stuffing our spring newsletter into envelopes and posting it to supporters who have asked to be on our mailing list. We have a team of enthusiastic volunteers surrounded by piles of paper in our meeting room.

The name “newsletter” rather undersells what it actually is – a 16 page full colour magazine. You can read it online as a PDF.

As usual, we have news of fundraising and the exploits of some quite amazing people. We always try to balance this with news and information about the progress of research and the nature of the disease we are fighting. This time, two articles stand out for me.

The first is a Q&A with Professor Seth Love of Bristol University, who is also the scientific adviser to our Trustees. We asked Seth to respond to some of the questions we are often asked, and his replies make for fascinating reading.

The other is a more personal story, in which filmmaker James Murray-White tells how he discovered that a friend of his in Jerusalem had developed Alzheimer’s. As always with such accounts, the sense of loss is profound and James’ story cannot be read without sadness.

It might strike some as a strange mixture of material, but it reflects what we do. At one end, the suffering that dementia brings. At the other, the gathering hope that we will beat this terrible disease, expressed in language and concepts that are challenging. In between, the fundraising work of the charity, turning the emotional response to the pain into a real fight back through science.

£66 million? Lovely, but…

David Cameron announced this week that the Government would be putting £66 million more into dementia research. He also pledged extra funds to help hospitals with diagnosis.

This is good news, without doubt. It means more resources for research, and these are urgently needed. It has also served to raise awareness of the condition, the suffering it causes and the horrifying cost to public services.

Is there a downside? Well, only if it causes people to switch off and think they can leave it to HM Government. The sums involved are unimaginable for most of us, but they are not going to fund all the research that is needed. The Government has built the bridge a little bit further out, but it is up to the rest of us to make sure it reaches the other side.

The other reason is that we can expect the additional funds, made available through official channels, to find their way most naturally to large scale clinical trials and other hugely expensive projects. This is good, because it is not the sort of bill that many charities could pick up. However, we still need to give wings to the smaller initiatives, the pilot projects and other pioneering work that can lead to bigger things later. This is where BRACE has often played a key role.

With this sort of partnership between large and small, public and voluntary, there is more reason that ever to believe that we will eventually defeat Alzheimer’s.

We're here because Alzheimer's hurts

Sometimes you find a few words, however brief, which go straight to the pain that underlies what we do. Let’s face it, we’re here because dementia is a cause of profound suffering to millions of people.

I found a reminder – not that I needed one – in an article in The Independent called The Listening Project. It’s about a BBC programme, but the fourth paragraph concerns a conversation between a husband and wife who are about to be torn apart by Alzheimer’s.

I defy you to read it without being moved.

Send in the bouncers

We are being supported by some very committed and enthusiastic medical students this year. They are the Medical Science Society at the University of the West of England (UWE).

On Saturday, they will start a 24 hour bounce for BRACE. This involves a succession of students taking it in turns on a bouncy castle at UWE’s Fishponds site. They hope to set a new record.

I hope their digestive systems will take it, and I honour the sacrifice made by at least one of them who had hoped to be watching the rugby on TV.  Most of all I hope they have a great time.

If you want to support them (and you’re in the UK) you can send £5 by text. Just text the message JUMP24 £5 to 70070 and BRACE will get the full donation.

Why we need the money

We haven’t done badly, let’s face it. £12 million over 24 years is a worthwhile contribution to fighting Alzheimer’s.

However, when you see the need – 36 million sufferers worldwide – you know why so much more is needed and quickly.

There is also a more positive reason for wanting to ratchet up the fundraising this year. I have been looking at the research proposals that two universities want us to fund. I can’t help but feel excited when I see the remarkable progress that a scientist is already making with BRACE funding. She needs more resources to develop the research further. Then there are proposals to trial a new treatment or explore better ways of diagnosing dementia.

Seeing the potential in these very exciting plans is all the motivation we need. Not making them happen is just unthinkable! That’s why we need myriad supporters, all playing their part in raising the funds to provide the resources. This year has started brilliantly and I believe we are going to get there.