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Issue:- 6 March 2015

Liverpool 'clinical trial' success receives global acclaim

CLINICAL SUCCESS: The National AKU Centre at ward 9B at the Royal hospital in Liverpool - Prof. Jim Gallagher, Prof. Lakshminarayan Ranganath, Dr Edmund Jessop and Dr Nicolas Sireau at the Robert Gregory National AKU Centre.

A national lead for the NHS in monitoring rare diseases; Dr Edmund Jessop; has visited The Royal Hospital and described the National AKU Centre on ward 9B as the 'largest and best AKU research base' in the world.

Dr Jessop, who is public health adviser to the highly specialised services team at NHS England made the trip from London to hear all about Prof. Lakshminarayan Ranganath's pioneering trials.

Prof. Ranganath's the co-founder and medical director for the National AKU Centre, based at the hospital. Alkaptonuria (AKU) - known as 'black bone disease' - is a genetic disease which damages the bones and cartilage.

It is extremely rare and usually affects one in every 250,000 people worldwide although in some parts of the world it can affect up to 1 in 125 people; eventually confining patients to a wheelchair.

Also in attendance was Liverpool University's Prof. Jim Gallagher who is in the Institute of Ageing and Chronic Disease along with Alkaptonuria Society chief executive, Dr Nicolas Sireau, who travelled from Cambridge to listen to the latest findings from the clinical trials.

They heard that year 1 of the pioneering clinical trial; the 1st of its kind worldwide; saw 128 AKU patients recruited to 3 treatment centres in Liverpool, Slovakia, and France. The initial results have indicated a:- 'major breakthrough' being on the cards and the success is attracting attention from doctors and AKU patients from around the globe.

The drug used in the trial; called:- 'nitisinone'; was originally developed as a weed killer, but during toxiCity testing it was revealed that it blocked the breakdown of amino acid, called tyrosine, which plays a crucial role in the development of AKU.

Dr Jessop said:- "Although rare, this is a particularly nasty disease for which there is currently no cure. The set up here in Liverpool is excellent; it's an 'expert centre' with the advantage of having different specialist metabolic support services, for example, ophthalmic, cardiology and orthopaedic surgery are all available in close proximity. This all really helps as the doctors are able to identify similarities with AKU patients; capture the information and knowledge; then understand the best way to treat or operate on future patients."

The drug used in the trial; called:- 'nitisinone'; was originally developed as a weed killer but during toxiCity testing it was revealed that it blocked the breakdown of amino acid, called tyrosine, which plays a crucial role in the development of AKU.

Early findings of the 60 month clinical trial have shown the treatment has reduced the amount of homogentisic acid in patients' urine by 98.8%.

Prof. Ranganath, consultant physician, at the Royal Liverpool University Hospital, added:- "I would like to thank everyone for coming along to Liverpool to find out more about our first year of the AKU clinical trial. Early signs are more than encouraging; we are determined to find a cure for this nasty disease and totally eradicate it, once and for all."

AKU is a hereditary disease; the condition is debilitating and without treatment patients develop serious joint disease. Traditional treatments include pain management and joint replacement surgeries, although these do little to slow down the progression of the disease.

The condition usually starts to affect a person's spine in their mid-20's and then goes on to have a detrimental effect on everything they do in life and sadly ends up with AKU patients confined to a wheelchair.

The National AKU Centre on ward 9B at the Royal was named after Liverpool born Robert Gregory, whose case kick started the research into the disease by clinicians and researchers from the hospital. Robert sadly passed away in October 2014.

Who is affected?

UK - 1 in 250,000

Jordan - 1 in 250

Dominican Republic - 1 in 19,000

Research is on going to find out why the mountainous parts of north west Slovakia has much higher rates of AKU cases.

Lack of savings keeping residents in the North West up at night

NEARLY 1 in 7 Brits are kept awake at night over money worries, impacting their day to day lives.  A study by TopCashBack.Co.UK, reveals that it's a lack of savings that's making residents in the North West toss and turn with more than a quarter quoting savings as their biggest financial worry.

64% of residents do not have the recommended 3 month 'safety net' of savings set aside and only 48% have a 'stash' put away for a rainy day. The study also found that just 45% of residents put savings into a pot each month. Despite worrying about their lack of savings, 41% of those in the North West admit to 'splurge' purchases that they either cannot afford or later regret.

When it comes to stressful financial situations, 40% of residents say they would find being cut off from their gas or electriCity provider the most stressful and 32% would find being refused to withdraw money at a cash machine the most worrying.

However, when it comes to saving money, 83% of residents shop in the sales, 47% buy in bulk and 46% shop out of season.

Other key findings reveal that:-


21 to 40 year olds, in the North West, worry most about their lack of savings.

41 to 60 year olds worry most about not having enough money for retirement.

Those over 60 worry most about not being able to maintain their current standard of living.

Living Spit are back with Elizabeth I - Virgin on the Ridiculous

LIVING Spit (The 6 Wives of Henry VIII) return with another hilarious romp through history on Friday, 6 March 2015, with:- 'Elizabeth I - Virgin on the Ridiculous.'

1558. England. A country divided by religion and politics, teetering on the brink of Civil War. The hopes of the nation lie with 1 Woman.

2013. England. A country divided by those who enjoy plays featuring men in dresses and those who don't. The hopes of the nation lie with two Bristolian actors.

But Howard Coggins and Stuart Mcloughlin can no longer rely on apparent physical resemblances to Tudor monarchs. They've done The 6 Wives of Henry VIII, and the truth is neither of them look like anyone else.

But they won't be deterred. They're just going to have to dig a little deeper. Act a little better. Live a little dangerous-er, as they attempt to tell the story of the greatest Monarch that ever lived - 'Elizabeth - The Virgin Queen'.

But will these 2 theatrical fools be up to the challenge?

With more live original music, silly songs, stupid shenanigans, perfunctory props, and hysterically historical horseplay, this promises to be (another) poorly researched lesson in Tudor history that you'll never forget.

'Elizabeth I - Virgin on the Ridiculous'
at The Atkinson starts at 7.30pm on Friday, 6 March 2015.

Tickets are £8 advance / £10 doors and are available online at:- TheAtkinson.Co.UK or by calling the Box Office on:- 01704 533333. They are also available over the counter during The Atkinson opening hours. Please be advised that there is a £2 booking fee for telephone and online sales.

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Deceased estates notice - Lilian May Jackam

Pursuant to the Trustee Act 1925, any persons having a claim against or an interest in the Estate of Lilian May Jackam (also known as Lillian May) Jackam (Deceased), late of Birch Abbey Rest Home, 55 Alexandra Road, Southport, Merseyside, PR9 9HD, UK, who died on 04/10/2018, are required to send particulars thereof in writing, to the undersigned Solicitors, on or before 24/05/2019, after which date the Estate will be distributed having regard only to claims and interests of which they have had notice. Churches Solicitors, 12 High Street, Fareham, Hampshire, PO16 7BL, UK. Ref:- 'T553015.'

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