Jon Moon

Clarity and Impact

Lewy Body Society

Below are details on Lewy Body disease and the Lewy Body Society, along with suggestions on how much to give if you're thinking of so doing. You can donate via PayPal using your credit or debit cards or through your own PayPal account.

Whatever you contribute, many thanks from me, the Society (www.lewybody.org) and all those that suffer from Lewy Body.

What is the world of a Lewy Body Disease sufferer?

Imagine you've got Parkinson's Disease. Your physical abilities deteriorate terribly. Soon, you can't even hold a cup, let alone your one-year old grandson. But, you say to yourself, at least you've got your mental faculties.

Now imagine you've Alzeimer's Disease too. Your mental faculties deteriorate terribly as well. Soon, you can't hold a conversation. As for your grandson, you don't even know he exists. And you often get vivid frightening hallucinations.

This is the cruel world of Lewy Body Disease. It combines the debilitating symptoms of Alzheimer's and Parkinson's in one terrible illness. And about 130,000 people in the UK have it.

Someone close to you may have it.

Someone close to me did until she died from it in 2006.

Medically, what's it about?

First identified by Dr Lewy in 1912, the disease consists of microscopic protein deposits found in the brain that disrupt the brain's normal mental and motor functionings. Due to close work between researchers in the UK, Japan and the USA, the disease is now recognised as a distinct medical condition and not a variant of Alzheimer's or Parkinson's diseases.

It's crucial to spot the disease early and accurately, otherwise patients can get prescribed the wrong drugs with bad, maybe even fatal consequences. Unfortunately, misdiagnosis often happens for two reasons: first, its symptoms are similar to Alzheimer's and Parkinson's; second, few people know of Lewy Body Disease.

Which is one of the reasons the Society was formed.

What does the Society do?

Founded in June 2006, the Society is the only European organisation dedicated to Lewy body Disease. Its mission is to support research into this disabling disorder and to raise awareness of it amongst the public, the medical and healthcare professions and those in decision-making positions. "Our five year goal is to raise the degree of name recognition of Lewy body disease to that of Alzheimer's" said the Society's chair and founder, Ashley Bayston.

The Society has a Medical and Scientific Advisory Panel that includes leading names on the subject. See below for more.

So far (August 2008), the Society has raised almost £100,000 in contributions. It's made a £20,000 grant for medical research and hopes to sponsor a PhD studentship. The Society has about 250 members, mainly in the UK but also in USA, Australia, Greece, Norway, Belgium and Ireland.

See www.lewybody.org for much more information.

Patrons
Princess Millicent Medvied (died of Lewy Body, April 2008)
Miss June Brown MBE, better known as ‘Dot' of Eastenders

President
Ian McKeith MD, FRCPsych F Med Sci 

Trustees
Ashley Bayston JP, BA, LLB (Chair)
Alexandra Gabriel-Bayston MA
Steve Ford, Chief Executive, The Parkinson's Disease Society
Robert Meadowcroft BEd(Hons), MA
Barbara Stephens BSc, Chief Executive for dementia
Angela Busch BSc

Medical and Scientific Advisory Panel

The Lewy Body Society's President and Chairman of its Medical and Scientific Advisory Panel is Professor Ian McKeith of Newcastle University. Professor McKeith is universally acknowledged as the world's leading expert on Lewy Body Disease, having published more than 200 peer-reviewed papers on the subject. He is also co-Director of the UK Dementia and Neurodegenerative Disease research Network ( DeNDRoN). Newcastle University is the UK's centre of excellence in ageing.

Other members of the distinguished panel are Dr Jane Byrne (Manchester University), Dr Steve Illiffe (University of London), Prof John O'Brien (Newcastle University), Dr Jerry Playfer (past president British Geriatrics Society) and Dr Zuzana Walker (University of London) as well as US Drs John Duda and Carol Lippa, of Pennsylvania, USA.

Any suggestions on how much to donate?

If thinking of donating, here's a suggestion for how much: £2 for each download – if you download 10 templates, donate £20. It's just a suggestion though. If you can afford more, feel free to give more. Or, if the downloads really help you with that new business pitch or land you that new job, then maybe dig a bit deeper.

And if you can't afford much, no worries - but please give something if at all possible. Note though that if you donate less than £2.50 in total, PayPal's charges soak up quite a bit of it.

I'll occasionally give you updates on how much has been donated to the Society in total by all you 'downloaders'.