Unique Dementia Charity Celebrates Successful First Year - The Lewy Body Society

21 May 2007
http://www.medicalnewstoday.com/medi...p?newsid=71553

The Lewy Body Society (registered charity number 1114579) celebrates its first year of operation on Friday June 15,2007 with a formal dinner at the Reform Club in London, UK. The charity is the only organisation in Europe dedicated to Dementia with Lewy bodies (DLB), which is also known as Lewy body Disease. Actress June Brown, better known as Dot in East Enders, will be amongst the guests at the fundraising dinner, who are coming from as far away as Arizona and Luxembourg, as well as from all over the UK.

Virtually unknown but not uncommon, DLB is the second most frequent cause of age-related dementia, currently affecting approximately 120-130,000 people in the UK.

Lewy bodies, first identified by Dr Friedrich Lewy in 1912, are microscopic protein deposits found in the brain. Their presence disrupts the brain's normal functioning, causing progressive mental and motor dysfunction.

Because DLB shares common characteristics with both Alzheimer's and Parkinson's Diseases, it is often misdiagnosed. Accurate and early diagnosis is crucial because administering the wrong drugs can have extremely adverse and even fatal consequences.

Founded in June 2006 by Ashley Bayston, a barrister whose mother suffers from DLB, the charity's 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.

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 in DLB , 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.

According to Prof McKeith: "Virtually unrecognised 20 years ago, DLB could within this decade be one of the most treatable neurodegenerative disorders disorders of late life. The first goal must be to raise awareness."

"Our five year goal is to raise the degree of name recognition of Lewy body disease to that of Alzheimer's" said Mrs Bayston, who is Chair of the LBS. 2012 is the centenary of Dr Lewy's discovery. The Alzheimer's centenary was in 2006. "Ultimately the Lewy Body Society hopes to be a force in making DLB an historic disease, like the plague that it is." The LBS plans to sponsor a PhD studentship in the autumn, details to be announced. The charity will also be publishing on online book on DLB in the next few months.

The Lewy Body Society was registered by the UK Charity Commissioners on 6 June 2006 and its website, www.lewybody.org went on line at the end of October last year. Since then it has been steadily receiving 30-50 hits each day. The LBS has so far received almost £50,000 in contributions and there are around 250 members, mainly in the UK, but with a number in the US , 3 in Australia, and one each in Greece, Norway, Belgium and the Irish Republic.

www.lewybody.org