Match It For Pratchett

The Fake Bus Stop

Q. How do you stop Alzheimer's patients wandering away from a care home?

A. Build a fake bus stop.

“It sounds funny,” said Old Lions Chairman Franz-Josef Goebel, “but it helps. Our members are 84 years-old on average. Their short-term memory hardly works at all, but the long-term memory is still active. They know the green and yellow bus sign and remember that waiting there means they will go home.” The result is that errant patients now wait for their trip home at the bus stop, before quickly forgetting why they were there in the first place.

“We will approach them and say that the bus is coming later today and invite them in to the home for a coffee,” said Mr Neureither. “Five minutes later they have completely forgotten they wanted to leave.” The idea has proved so successful that it has now been adopted by several other homes across Germany.

It is a clever solution and a makes for a mildly amusing story but most importantly it is a reminder of the true cost of Alzhemier's. The loss of so much mental capacity that a fake bus stop will confound you.

Source: Wayward Alzheimer's patients foiled by fake bus stop via Boing Boing

Alzheimer Patients Demand Better Treatment

Brainblog points out an article in the New York Times about Alzheimer's.

Don Hayen has a handy way of deflecting the instant pity that comes when he reveals his Alzheimer's disease: "But I haven't lost my keys all day," he quickly jokes. Hayen is part of a growing new movement in Alzheimer's: Patients diagnosed early enough to still be articulate and demand better care and better research.

Earlier diagnosis giving Alzheimer's a new voice

Brain Size and Alzheimer's

Though the cause of Alzheimer's disease (AD) remains unclear, research has indicated an association between AD and accumulations of amyloid-beta plaque and neurofibrillary tangles in the brain. While these abnormal brain changes have been viewed as a defining characteristic of AD, autopsies have shown that plaques and tangles can also be present in the brains of people who did not experience cognitive decline while alive. New research from the Oregon Health and Science University in Portland indicates that brain size may be involved in this discrepancy. The study, which was presented this week at the annual meeting of the American Academy of Neurology in Chicago, found that individuals with a large hippocampus were less likely to have symptoms of AD although plaques and tangles were present in their brains.

From: Study Links Brain Size to Alzheimer's

What Is Alzheimer's Disease?

Over on the Sharp Brains blog they are carrying an essay on Alzheimer's Disease by a US High School student called Kristin H. The essay was a project set by their Psychology teacher Jeffrey Gonce to describe a brain disorder that affects behavior and post it online.

Kristen's essay is one of several quality essays produced by the students and it tackles Alzheimer's. Not only is the essay informative but it also cites the scientific studies from which it draws its data. Its good to see that the next generation of scientists is learning its trade because the fight against Alzheimer's Disease is going to be a long one.

"Without (memory), we are hollow persons, not only empty of a past, but lacking a foundation upon which to build the future" (Altman 27). In a brain affected by Alzheimer's disease, neurons, nerve cells, are unable to work properly (Altman 29-30). Studies have shown that Uch-L1, an enzyme which rids the brain of protein, begins to disappear as the presence of the protein amyloid beta plaque begins to increase in an Alzheimer's brain as opposed to a normal brain. The abundance of the amyloid beta plaque partially disables a neuron's ability to communicate with other neurons (Coghlan).

From Alzheimer's Disease: Treatment Directions via Mindhacks.

Dine with Terry Pratchett

A message from the Alzheimer’s Research Trust:

Calling all fans of Terry Pratchett and Raj Persaud!

On 1st May the Alzheimer’s Research Trust will be hosting an exclusive dinner at a private venue in London. The format of the evening is a dinner hosted by consultant psychiatrist, broadcaster and author of various popular publications on psychiatry, Dr Raj Persaud, with acclaimed author Terry Pratchett OBE as guest of honour. Mr Pratchett and Dr Persaud will spend time with our guests talking about their involvement with the Alzheimer’s Research Trust.

Places are strictly limited and seats will be allocated to the highest bidder with monies raised going to the Alzheimer’s Research Trust to support further research into Alzheimer’s and related forms of dementia.

If you would like to join Alzheimer’s Research Trust for this wonderful and unique evening, please register your pledge with us as soon as possible. You can do so by email to terrypratchettdinner@alzheimers-research.org.uk or by letter to the Alzheimer’s Research Trust, The Stables, Station Road, Great Shelford, Cambridge, CB22 5LR or fax to 01223 843325. We need to hear from you by 3pm on 21st April. Successful bidders will be notified by close of business on 24th April.

Seat allocation will operate on a closed-bid basis. In the event of several bids of equal amount being received, where it is not possible to distinguish which bid was made first, invitees will be chosen by process of random selection.

Update from the Alzheimer's Research Trust

A message from Andrew at the Trust:

The latest count of donations to the Alzheimer’s Research Trust since Terry Pratchett’s speech and donation is £48,693 from 1,102 donors.
Thank you for keeping this going so fantastically.

Spend Money For Charity

Online comic strips Narbonic and Skin Horse are selling off original artwork at $25 a strip. All proceeds to The Alzheimer's Research Trust. Thanks to From Rim To Hub for the tip-off.

Alternatively you can spend your money on a variety of auctions including proof editions of Good Omens and Only You Can Save Mankind, as well as various George R. R. Martin books. All proceeds going toAlzheimer's Association. Full details of the auctions here.

Money & Match It For Pratchett

The amount of money the campaign has taken through the Donation Jar has been staggering. The jar itself was just an after-thought, quickly added to the web site when I saw Typepad made it very easy it set one up. I only ever expected it to be a connivence for those who had Paypal accounts and for it to collect a small amount of money. In some ways this is true, much much more money has gone straight to the charity. However several thousand dollars in my Paypal account is more than I expected to handle and this has been worrying me.

To the rescue comes Rebecca, CEO of the Alzheimer's Research Trust. We had a good chat yesterday and the Trust is in the process of setting up its own Paypal account. Once its up and running, I will switch the Donation Jar so that it pays direct into their account instead of mine. All the money collected so far will also be transfered over. Because of the bank holiday and the hoops the charity needs to go through to set up their Paypal account this is not going to happen until next week. In the meantime I will continue to give regular updates and list each and every donation on the Detailed Accounts page.

The money from the T-Shirt's will still flow into my account and be forwarded on to the charity at regular intervals. However I will be updating the site slightly to make it clear how much of each shirt goes to the charity. (Its $10 per shirt).

Rebecca has promised to keep us informed of how much has been raised and she sends her thanks to everyone who has donated, posted on their blog about the campaign or simply told a friend about it. The response of Terry's fans around the world has been fantastic.

Wear The Lilac - May 25th

It is a tribute to the Terry Pratchett's writing skills and his friendly attitude to fans that he has inspired not only Match It For Pratchet but a second campaigns to raise money Alzheimer's.

In Nightwatch, the men who fought and died (and in one case, fought, died and kept on fighting) in the Revolution are remembered by the wearing of sprigs of lilac every May 25th. The online Pratchett communities have adopted May 25th as Wear The Lilac day, an unofficial holiday celebrating Pratchett's work. Now AG has taken it one step further with these fantastic Lilac Pins with the proceeds split between the American Alzheimer's Association and the Alzheimer's Research Trust.

From AG's website:

These lilac pins are made from life-size silk blooms and tied with a black velvet ribbon. The large size blooms are approximately the size of a lady's corsage spray, and the smaller blooms are the size of a gentleman's buttonhole/boutonniere.

More details on Wear the Lilac for Alzheimer's

We think that Wear The Lilac is a great idea to show your support of both Terry Pratchett and to raise money for Alzheimer's research. Here at Match It For Pratchett we have ideas to support Wear The Lilac with special Icons for download and possibly T-shirts. |f you have ideas or ways of supporting Wear The Lilac day, please let us know via the comments.

Lara Croft’s Buttocks

From the start of the speech to Alzheimer’s Research Trust Network.

Ladies and Gentlemen. My name is Terry Pratchett, author of a series of inexplicably successful fantasy books and I have had Alzheimer’s now for the past two years plus, in which time I managed to write a couple of bestsellers. I have a rare variant. I don’t understand very much about it, but apparently if you are going to have Alzheimer’s it’s a good one to have. So, a stroke of luck there then…

and from the end

I'd like a chance to die like my father did—of Cancer, at 86. (Remember, I'm speaking as a man with Alzheimer's, which strips away your living self a bit at a time). Before he went to spend his last two weeks in a hospice he was bustling around the house, fixing things. He talked to us right up to the last few days, knowing who we were and who he was. Right now, I envy him. And there are thousands like me, except that they don’t get heard.

So let’s shout something loud enough to hear. We need you and you need money. I’m giving you a million dollars. Spend it wisely.

If you want to know what this post title has to do with anything, read the full text of the speech.

Thanks to pwt_fan and the Discworld LJ community for finding this.

Grand Total: £34,000

Direct to Alzheimer's Research Trust: £32,189.65 (824 donations)

Via MatchItForPratchett.org: $3973.34

Approximate Total: £34,000

The Alzheimer's Research Trust figure is on the conservative side as the charity is still catching up with the flood of donations. Details of the money raised from MatchItForPratchett.org can be found on the Money & Accounts page. We don't know how much has been donated in the US or around the world but we hope to have some information soon.

Contact!

Match It For Pratchett and the UK's Alzheimer's Research Trust have made direct contact and I should be able to bring you daily updates of direct donations along side updates of donations taken by the web site. We are also trying to build links with other national Alzheimer's groups. If you work for one, please get in touch.

In his email, Andrew from the Alzheimer's Research Trust wrote

I got the chance to see the results of some of the research we've funded over the last year at the conference in Bristol last week, after Terry spoke. It really is promising stuff. There's a sense amongst the world class scientists working on dementia in the UK that we're on the brink of some major breakthroughs. Having Terry speak with such clarity and wit really helped bring home why we're doing this.

We can all make a difference to the millions of people a year from around the world who are diagnosed with Alzheimer's by giving money, time, enthusiasm, space on your blog or simply emailing the URL to a friend.

Go on, make a difference

£29,286.15 from 688 donations

This is how much the UK's Alzheimer’s Research Trust has received since the start of the campaign.

As promised, here’s the total value of donations to the Alzheimer’s Research Trust thanks to the Match it for Pratchett campaign so far:

£29,286.15 from 688 donations

This is tremendous news. We’re so excited about the way this campaign has grown. It’s non-stop right now in the Trust’s offices.
The research this will fund offers hope to the more than 24 million people around the world with dementia. Thanks to Terry, online fans like you, and many others the dementia deficit in research funding is narrowing.

Via Another Message From the Alzheimer's Research Trust

Its a great start but there is still a lot more money to raise. Whether it is face-to-face, on Twitter, LJ, your blog or your favourite forum, don't stop mentioning the campaign.You can make a real difference to humanities understanding of Alzheimer's.

Why They Are Giving

News of Match It For Pratchett is continuing to spread fast thanks to the numerous Live Journal folks who have been linking to us. We are also seeing Match It for Pratchett spring up elsewhere, such as the Fancy Rat community, the Book Crossing forums, Journal Fen users, UKNot, BPal and bloggers like Tania and From Rim Too Hub.

Amongst all the links there are reminders of why research is desperately needed and glimpse of the human cost of Alzheimer's. A cost that is normally hidden from all but the close family such as Jason Lundberg.

My parents took me and my sister to visit [Grandmother] a few times in the later stages, and she was hardly recognizable from the sweet thoughtful woman who spoiled me on visits, sang to me at inappropriate times in restaurants, and had once performed at Carnegie Hall. She didn't know who I was and had a hard time communicating at all; her body, petite to begin with, had pulled into itself, her back hunched over, knees clamped together, hands contracted into claws. Toward the end, she had to be fed intravenously because her epiglottis was no longer preventing food from going into her lungs when swallowing, and she was unable to cough it back up. It was an unbelievably uncomfortable experience seeing this woman that I loved in such an undignified and helpless position

Why Every Little Helps

From The Alzheimer's Research Trust (via Pat)

As you may already know, the Alzheimer's Research Trust currently has to turn down two out of every three applications for research grants. Up to now, only £11 is spent on UK research into Alzheimer's for every person affected by the disease, compared with £289 for cancer patients. We're urgently scraping for every penny as we search for better treatments. (Statistics)

The support from Terry, you and many others will fund vital research in the UK and around the world. Whether it's $2 or $1million that you give, the difference made is tangible. £12.50 ($25), for example, is enough to fund one hour of cutting-edge research. It looks like the blogosphere is making the fight against Alzheimer's a whole lot stronger.

First Post!

Welcome to Match It For Pratchett, the campaign to match Terry Pratchett's $1 million ( £500,000 ) donation to Alzheimer's Research. In time we will have news of how much has been raised and how you can help but right now things are still being set up. If you would like to support the campaign, the most useful thing you can do right now is spread the word. Post a link on your web site, on Twitter, Face Book or whichever social networking site you use.