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.