Spring 2005 Newsletter

 

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Articles

MS Nurse Liz loves her job and it shines through

+++++SALFORD’S BIG NIGHT OUT+++++

 

MARCH FUNDRAISER

 

Phil your boots

       Great Manchester Run champions

       To sponsor Phil

       Join the MS Society

 

Disability reform at last

 

It gets on your nerves

 

Tysabri two-year trial results announced

 

The Salford MS Society Committee

 

Information

 

 

 

MS Nurse Liz loves her job and it shines through

FEW of us “genuinely love coming to work” - but Liz Hartley does.

Warwickshire-born Liz finds working as an MS Support Nurse at Hope Hospital “rewarding”.

So we asked her why.

“I started my nursing career in 1986.I joined the MS specialist nurse service two years ago and was appointed mainly due to my experience working in the community.

It is special to accommodate everything from the early years of my medical learning.”

How is the Hope Hospital MS team put together?

“The MS nursing team consists of six MS nurses and is led by an MS nurse

consultant.”

What does the team aim for?

“We provide information and support to people with MS and those affected.

We give them an accessible service.” 

So what sort of things do you do?

“I visit patients at home as well as in clinic. 

I give talks  to other health and social professionals and voluntary services.” 

So the MS network is really developing?

“Great emphasis is placed on networking with health and social care providers and

voluntary organisations such as the MS Society. 

Educational courses have been run in conjunction with local MS Societies around the city.

The MS nurses are also working with other professionals to establish a Specialist Interest Group for MS to share good practice.

I am keen for services for MS patients to develop both locally and nationally, working with those affected by MS to meet appropriate need.”

 

+++++SALFORD’S BIG NIGHT OUT+++++

THE Salford MS Society is backing a volunteer-led entertainment evening that takes place at St Lukes’ church hall on Saturday, May 14.

Vince Hopkins and Joe Conboy have organised an evening to lighten peoples’ hearts - and their wallets or purses!

The aim of the Big Night Out is to raise money for people with MS in Salford by entertaining.

The music will be put on by The Barflies and The Mearcatz - excellent bands who know how to get the crowd involved.

Established comedian Dave Buck will also grab the mike and he is an old hand at keeping the audience amused!

He has worked on the radio, in the theatre and on stages all around Europe.

Doors open at the Swinton Park Road venue at 7.30pm.

The hall is designed for wheelchair access so everyone is welcome.

Tickets are £5, so just phone the Salford branch and leave your name and address and what you need on 0161 707 9848.

Vince and Joe are working hard to make the night a success but they need YOU to support it. The more the merrier!

 

 

MARCH FUNDRAISER

WE’RE in the mood for money!

An MS fundraising night is to be held at the St George’s Day Centre, Douglas Green, Salford at 7.30pm. It is a wheelchair-friendly building.

The entertainment includes three musical acts, bingo and a raffle.

There will be a bar until 11pm.

Tickets are only £2.50 and can be bought on the night or directly from Christine on 0161 661 0869.

 

Phil your boots

WEBSITE wizard Philip McHenry lines up for the Salford MS Society in the 2005 Great Manchester Run.

The Great Manchester Run, which takes place on Sunday, May 22, is one of the world’s fastest-growing athletic events.

And Phil, 29, has volunteered to wear the MS Society colours in the event, that starts at 10.30am.

Serious

The young man is confident he will not disgrace himself:

“I’m training to complete the course in around an hour. I must mean business - I’ve quit smoking!”

The race begins near to Central Library, St Peter’s Square between Oxford Road and Quay Street. He is looking for sponsors (see top right of the page) to complete the 10km (6.21 miles) contest.

There will be a big screen outside GMEX which will be an ideal location to watch the race and meet with friends afterwards.

At 4pm, the BBC will produce a highlights programme of the Great Manchester Run but transmission times are subject to change. Check press for details.

The event takes place in Manchester city centre and is easily accessible.

There are several car parks within walking distance of the Oxford Road start.

Aussie Craig Mottram, lifted the prize 12 months ago in a stunning 27 minutes 54 seconds from the 16,000-strong field.

Plan

Mottram said: “Everything went as I wanted it to. It was a world class field and a race I wanted to win.”

Minimum age for entry is 15.

Just log on to http://www.greatrun.org/ for more details.

                                          

To sponsor Phil just leave your details on 0775 265 9121

 

Great Manchester Run champions

MEN

Craig Mottram (Australia)   27:54

 

WOMEN

Sonia O’Sullivan (Ireland) 32:12

 

WHEELCHAIR RACERS (MEN)

David Weir (Great Britain) 22:30

 

WHEELCHAIR RACERS (WOMEN)

Francesca Porcellato (Italy)      26:28

 

Join the MS Society for only £5 a year by calling 0208 438 0759 using your credit/debit card.

 

Disability reform at last

A new Office for Disability Issues is coming.

A recent report says that by 2025 disabled people should have “full opportunities and choices to improve their quality of life and will be respected and included as equal members of society”.

The report sets out measures to help disabled people move towards individualised budgets that will allow them to purchase the right services, when they need them.

Advice services will improve and suitable housing and transport will be more readily found.

Incentives for getting a job and staying in it will be improved by ensuring support is available before a benefit claim is made.

Other measures include reforming the gateway to entitlements, providing effective work-focused training and improving Access to Work and other in-work support.

Attention will also focus on giving disabled youngsters better opportunities and choices.

Mike O’Donovan, chief executive of the MS Society, said, “We’re pleased to see the government’s trying to give disabled MS sufferers independence and choice.

“Well over half are unemployed and many would like to work but are denied the chance. We welcome the support.”

The report can be seen at www.strategy.gov.uk in PDF format. An easy-to-read summary is also online.

Feedback should be sent to: Disabilty@cabinet-office.x.gsi.gov.uk  or Strategy Unit Disability Team, Cabinet Office, 4th Floor, Admiralty Arch, The Mall, London SW1A 2WH.

The deadline for responses is April 15.

 

It gets on your nerves

MS worsens and improves in cycles

Scientists have found a gene that controls the body’s ability to repair the nerve damage caused by MS.

MS strips nerves of myelin, impairing their ability to send signals.

In your genes

Researchers at Cambridge and Harvard Universities have found that a gene called Olig 1 can stimulate the re-growth of myelin.

MS inflammation causes a range of symptoms from fatigue and numbness to difficulties with movement, speech and memory.

The relapsing-remitting form follows a pattern of periods of deterioration followed by partial recovery. During remissions, damaged nerves are re-covered with myelin.

Research has shown that Olig 1 jump-starts this process.

Researchers found that labaratory mice, bred without Olig 1, were unable to repair demyelinated cells.

They went on to examine the location of Olig 1 in samples taken from human MS patients.

In healthy areas of the brain the gene appeared inactive but it was active in damaged regions.

Researcher Dr Robin Franklin said: “This suggests that the Olig 1’s function has been shaped by evolution to repair the brain in areas where the insulating layer of myelin has been depleted through disease.”

While the cycle of damage and repair can go on for many years in MS patients, eventually the system wears down and, in most people, the disease progresses with fewer remissions.

Dr Charles Stiles, from Harvard’s Dana-Farber Institute, said: “Perhaps the signal that calls Olig 1 into service becomes weaker.

“Although this finding will not yield direct results in terms of finding treatment for MS, we are confident that it gives new insight and direction for research.”

Optimism

Mike O’Donovan, chief executive of the MS Society, said: “There is growing optimism that a way can be found of repairing MS damage.

“A great deal of research effort, including work we fund, is now focused on it.

This finding is an encouraging scientific step along a road which will hopefully lead to therapies.”

 

Tysabri two-year trial results announced

Biogen-Idec and Elan Corporation have announced that a two-year trial of Tysabri (natalizumab, also known as Antegren) has shown a 42 per cent reduction in the progression of disability in patients with relapsing/remitting MS.

The trial also confirmed earlier findings of a 67 per cent reduction in the rate of relapses.

Details of the results of the trials will be presented at the American Academy of Neurology meeting in April.

Mike O’Donovan said “It is the first time we have seen such significant evidence of the slowing of disability in MS. We keenly await publication of the full results.”

An application for a European licence for Tysabri will be made this year.

 

THE SALFORD MS SOCIETY COMMITTEE

Position               Name

Secretary             Roz Fox

Welfare Team      Angela Kilcullen, Tracey McGill, Judy Whitwood.

Treasurer             Linda Bell

Fundraiser           David Wilson

Newsletter editor  Joe Conboy

Website design    Phil McHenry

 

 

INFORMATION

Salford Branch phoneline

0161 789 3192

Free MS Helpline

0808 800 8000

Log on to http://www.mssociety.org.uk/

This MS newsletter is published by the Salford District Branch of the MS Society.

We give regular updates about MS and what is happening locally in the MS community. 

All the views expressed in the publication are individual and not necessarily the view or policy of the charity and its supporters.

Charity number 207495.