LONDON, June 30, 2010 /PRNewswire/ -- Sir Michael Rawlins, the Chairman of the National Institute for Clinical Excellence, (NICE), will reveal on 30th June, that new statistics for the prevalence of Huntington's Disease (HD) in the UK will show that the Government has misjudged the numbers impacted by the disease. He will show that official Government figures for those who are symptomatic of having HD are wrong by a factor of at least two. Further research is to be commissioned which is expected to prove that even this updated figure is an underestimate.
Huntington's Disease, often called HD, is an incurable hereditary disorder of the central nervous system which affects muscle co-ordination and cognitive functions. It usually first shows itself in middle age and in time leaves its sufferers needing full time nursing care before they die. Every child of someone with HD has a 50% chance of inheriting the disease.
The genetic certainty of developing Huntington's Disease for those carrying the abnormal gene gives medical science a chance of finding the key to unlocking the door for a whole range of more common neuro-degenerative diseases such as Alzheimers and Parkinsons.
Lancet articles
Sir Michael will have an article published in The Lancet on 30th June, accompanying Alice Wexler's article ( http://www.hdfoundation.org/bios/alicew.php) on HD stigma, as well as a feature in Lancet Neurology by Laura Spinney, on prevalence. Prof Sarah Tabrizi's clinical review on Huntington's disease for the British Medical Journal will also be published online on the 30th June.
Sir Michael will say: Stigma (of having HD) has had a deleterious effect on studies that have sought to investigate its epidemiology and...the true prevalence is unquestionably greater than this.
Science Media press conference - 11.00am Tuesday 29th June
A press conference will be held at the Science Media Centre at the Royal Institution (http://www.sciencemediacentre.org) at 11.00am on 29th June 2010, addressing the Lancet content, and the commissioning of HD prevalence research from leading epidemiologist Professor Stephen Evans ( http://www.lshtm.ac.uk/people/evans.stephen)
Press Conference Participants will be;
Sir Michael Rawlins, Chairman of NICE and a professor London School of Hygiene and Tropical Medicine;
http://www.nice.org.uk/aboutnice/whoweare/board/chair/sir_michael_rawlin...
Professor Sarah Tabrizi: leads a large research programme in HD. Her clinical review on Huntington's disease for the British Medical Journal will also be published online on the 30th June
http://www.ucl.ac.uk/neuroscience/Page.php?ID=12ResearcherID=134
Professor Nancy Wexler: discovered the gene that causes Huntington's disease and will explain how UK prevalence could be significant worldwide. http://www.hdfoundation.org/bios/nancyw.php
Dr Alice Wexler: Writer on Huntington's who has published the article in the Lancet on Stigma and HD. http://www.hdfoundation.org/bios/alicew.php
Photo opportunities
Lobby of Parliament - 1.00pm Wednesday 30th June
The launch will be marked by the 'Huntington's Community' under the banner
HiDden no more (http://www.hiddennomore.co.uk) with a photo-opportunity including the patrons and supporters of the Huntington's Disease Association (http://www.hda.org.uk).
This will take place opposite the St Stephens entrance to the Houses of Parliament at 1.00pm, ahead of entering Parliament to lobby MPs. There will also be the signing of 25-foot long petition scroll containing the All Party Parliamentary Group Mission statement. This banner will then travel the country before being handed in to 10 Downing Street in the autumn.
Tony Hadley supports the HiDden No More campaign - 3.00pm Wednesday 30th June
At 3pm Tony Hadley of Spandau Ballet and a Patron of the HDA will add his signature to the petition scroll and be available for photo opportunities and interviews.
Interview Opportunities - College Green on afternoon of Wednesday 30th June
Between 1.30pm - 3.30pm, there will be press availability on College Green for one-on-one interviews with:
Sarah Winckless (1.00-2.30pm), Tony Hadley (3.00-3.30pm) Martyn Lewis, Charles Sabine, Sir Michael Rawlins, Prof Nancy Wexler, Dr Alice Wexler Dr Joakim Tedroff, Chief Medical Officer of Neurosearch, Dr Ed Wild, Cath Stanley, Head of Care Services at the Huntington's Disease Association (HDA) and HDA Family members. Dr. Wild and Cath Stanley will explain how HD has the greatest collateral damage of any, and that for every victim, at least two other people's lives are destroyed.
Launch of All Party Parliamentary Group on Huntington's
At 4pm on 30th June, an HD All Party Parliamentary Group, will be launched. It will be chaired by former a President of the BMA and leading UK Neurologist, Lord Walton of Detchant. ( http://www.news.parliament.uk/biographies/john-walton/26509) Frank Dobson, former Secretary of State for Health and MP for Holborn St Pancras, will be the Hon. Secretary and Mark Field, MP for the Cities of London Westminster, will be the Hon. Treasurer.
Widespread cross party support has been offered from a further 40 members of Parliament.
The APPG will be launched in the House of Commons at 4.00pm by former newscaster Martyn Lewis. http://www.youthnet.org/whoweare/youthnet-trustees.
Availability of features in advance of launch
Olympic and world champion rower Sarah Winckless, carrier of the HD gene: http://www.timesonline.co.uk/tol/sport/columnists/matthew_syed/article61...
Charles Sabine; Emmy Award-winning former NBC television news journalist, also carrier of the Gene, whose story can be seen at;
http://www.moreintelligentlife.com/content/laura-spinney/health-differen...
http://www.youtube.com/watch?v=e7Ub8DcJxygfeature=channel
Families from different regions who can show the nightmare that their daily lives entail, and the personal sacrifices that carers are prepared to make.
Scientific Researchers, showing how the genetic nature of the disease can unlock doors to cures for all diseases in the future;
Professor Gillian Bates, Fellow of The Royal Society and leading pure scientist in HD.
http://en.wikipedia.org/wiki/Gillian_Bates
Professor Sarah Tabrizi leads a large research programme in HD, focusing on the search for bio-markers of disease progression and disease pathogenesis to power therapeutic trials. As with so much HD research, this programme is breaking new ground in its field.
http://www.ucl.ac.uk/neuroscience/Page.php?ID=12ResearcherID=134
Dr Joakim Tedroff is the Chief Medical Officer of Neurosearch, the Danish based biopharmaceutical company
(Due to the length of some of the URLs in this release, it may be necessary to copy and paste the hyperlinks into your Internet browser's URL address field. Remove the space if one exists.)
For further information: Adrian Flook M:Communications +44-(0)20-7920-2388 / +44-(0)7768-608396 flook@mcomgroup.com On 30th June Andrew Bickerdike +44-(0)7749-727487 andrewbickerdike@hotmail.co.uk
SOURCE: National Institute for Clinical Excellence (NICE)
CONTACT: For further information: Adrian Flook, M:Communications,+44-(0)20-7920-2388 / +44-(0)7768-608396, flook@mcomgroup.com On 30th June:Andrew Bickerdike, +44-(0)7749-727487, andrewbickerdike@hotmail.co.uk
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