Keeping it in the family

Charlie Leech (13) a pupil at Malbank School in Nantwich has raised £250 for the Cheshire branch of the Motor Neurone Disease Association after organizing a fun run at his school.
Charlie, who is charity rep for Form 8D suggested MND as his grandmother died of the disease in 2007.
On November 3rd, Hazel Francis, head of fundraising for the branch, attended an assembly at Malbank School to collect the cheque. Charlie and other members of his form described how they have helped to raise awareness of MND by taking part in a presentation and discussion for other pupils in year 8.

Charlie’s brother, Alasdair from Highfields Primary School also organised a fun run recently and raised £800.

Knutsford Guardian feature

The Knutsford Guardian has published an interview with Hal Bailey and his wife Margaret detailing the story of Hal's diagnosis. The feature is now on the website. Click here to read the full story.

Schoolboy Raises £800

Alasdair Leech, 10, from Highfields Primary School organised a fun run and raised £800 for the Cheshire branch of the Motor Neurone Disease Association.

Alasdair’s grandmother died of the disease in 2007 which inspired her grandson to do something worthwhile to help. Alasdair asked his headteacher, Mr Dyson, if he was allowed to organise a fundraising activity in school and was given the necessary permission. Alasdair then sent sponsor forms home to parents and encouraged the whole school to take part. The fun run took place on Friday 23rd October.

Alasdair was also inspired by his brother, Charlie, a pupil at Malbank High School who had recently arranged a fund raising event of his own.

Alasdair said: “My Gran died of Motor Neurone Disease in May 2007. My brother organised a sponsored run at his school and he inspired me to raise money too, so I went to see Mr Dyson and he agreed.”

Chair of the Cheshire branch of the Motor Neurone Disease Association, Julie Williams, attended a school assembly and collected a cheque for £800. “The Association is very grateful indeed to Alasdair and all those who took part in the fun run and raised money for this extremely good cause,” she said.

The MND Association is always looking for volunteers to help with fundraising to:
• provide care and support for current sufferers;
• research into the cause of the illness;
• search for a cure, or effective treatments.

Pic Caption: Julie Williams, chair MND Association Cheshire branch, Alasdair Leech, Mr Dyson, headteacher, Highfields Primary School.

Crewe Chronicle feature

For a moving and brave account of one woman living with MND please click the link here.

Thank you to the Crewe Chronicle for taking the time to conduct the interview with Margaret and Danny Boyd.

Quiz win at The Shrewsbury Arms

On 14 October Julie Williams, chair of the Cheshire branch of the Motor Neurone Disease Association collected a cheque for £1200 from patrons of the Shrewsbury Arms, at Little Budworth near Winsford. The money was raised over the last 12 months as a result of the pub quiz held every Wednesday night at 9.30 pm. The winner on the night receives half the entry fees collected with the other half going to charity. Customers at the Shrewsbury Arms chose the MND Association in remembrance of two regular customers, Mike Carney and Jimmy Walker who sadly both died of the disease.


Caption: Chair of the Cheshire Branch of the Motor Neurone Disease Association, Julie Williams, accepts a cheque for £1,200 from Tom Hall one of the two landlords at The Shrewsbury Arms.

30th Anniversary Celebrations

On Tuesday 6th October the Cheshire branch of the Motor Neurone Disease Association took part in a national event celebrating the 30th anniversary of the MND Association with a Light a Lantern celebration.
Around 40 people met at the Methodist Church in Hospital Street, Nantwich to remember family and friends lost to motor neurone disease and to offer support for those living with the disease today.
Julie Williams, chairperson of the Cheshire branch, introduced Richard and Amanda Francis of Nantwich who, together with Katie Gibbons, successfully completed the Arctic Challenge in February and raised £13,000 for the MND Association in the process. Amanda and her brother, Richard, put on a slide show with images of their trip.
There was tea, coffee and a buffet while lanterns were lit for loved ones followed by music from 17-year-old singer, Jane Parry from Calveley and 16-year-old Jess Faulkner from Eccleston, near Chester. Jane sang a selection of songs including ‘Over the Rainbow’ and Jess played four short pieces on the trumpet.
Julie Williams thanked all those who had attended and said: “Today, there are around 5,000 people living with MND. Back in 1979 the same number were struggling to cope with the news of a terminal diagnosis alone. Thanks to the support of our dedicated volunteers we have come a long way since we were founded by a group of people determined to help those affected by the disease. Today, some 30 years on, we have over 3000 volunteers across England, Wales and Northern Ireland. In 1979 the Motor Neurone Disease Association raised around £20,000; thirty years later that figure is close to £20m. Our objectives, however, remain the same. We will always aim to provide relief for those suffering from MND and its associated conditions by providing financial support and other help and we will always promote research into the cause and possible prevention of the disease.”
The branch also raised £86 from the sale of raffle tickets on the night.

Caption: Left to right, Richard Francis, Julie Williams (chairperson), Jane Parry, Clare Ward (secretary), Jess Faulkner, Hazel Francis (volunteer co-ordinator), Amanda Francis.

Light a Lantern Celebration

On Tuesday October 6th the Cheshire branch of the Motor Neurone Disease (MND) Association is taking part in the Association’s national 30th birthday celebrations with a Light a Lantern celebration.
The celebration will take place at Nantwich Methodist Church between 7pm and 9pm and anyone who is affected by the disease or who has been affected in the past is welcome to attend. Members and Friends of the Association will be lighting lanterns in memory of those who have been lost to the disease and to mark hope for the future. Jane Parry, a talented 17-year-old school girl from Calveley will be singing for all those attending and there will be hot drinks and nibbles served.

If you would like to come along please contact Hazel Francis on 01270 626222 or hazel@mndcheshire.org

Cheque handover at Hankelow

The organisers of Hankelow village fete raised money for two very good causes this year; Audlem First Responders and the Cheshire branch of the Motor Neurone Disease Association.
Mr. Tom Bourne who lives in the village and has been living with Motor Neurone Disease since October 2001 received a cheque for £500 which represented 50% of the proceeds from the raffle.
Tom said: “On behalf of the MND Association I would like to thank the Hankelow Amenities Group committee and all those who helped with this donation.”
Debbie Ruscoe-Icke, fundraiser for AFR added: “Thank you for thinking of us. Your generous gift will allow us to maintain the medical emergency cover the Audlem First Responders provide for the local community. The money is definitely appreciated and will be put to extremely good use.”



Caption: Barbara and Tom Bourne (receiving the cheque on behalf of MND); cheque given by Val Morrey, Ann Jones and Ian Jones of the Hankelow Amenities Group.
Amenities Group.

MND in the Independent

Clare Dunn's sister, journalist, Sarah Dunn has written a wonderful piece in The Independent today about their mother's death from MND in 2008. The article is beautifully written and really brings home the horrible suffering, not just to Mrs Dunn but to everyone else in Clare's family too.

Cover Stars - Hal and Margaret Bailey!

Hal and Margaret Bailey, leading lights in the Cheshire branch of the MND Association, were recently the subject of a feature in the latest edition of ‘Speech and Language Therapy in Practice’ magazine – even appearing on the front cover! Hal, a retired managing director of a software company, was diagnosed with motor neurone disease in 2004. In the Autumn issue of the magazine he gives his views on the Motor Neurone Disease Association's Year of Care Pathway, which he believes will increase healthcare professionals' ability to respond to the particular and changing needs of individuals.
For more details of the magazine log on to www.speechmag.com or for up-to-date information on subjects covered in the magazine as well as a mention for the Cheshire branch look here http://speechmag.typepad.com/speechmag/

Strawberries and Cream Fundraiser

The Cheshire Branch of the Motor Neurone Disease (MND) Association held its annual Strawberry and Cream Evening at the Nantwich Cricket Club on the 9th July to raise money to support people living with MND. Hazel Francis, Branch Fund Raiser, organized this year’s event following the retirement after 10 years on the committee of Joan Park who, sadly, could not attend due to ill health.

More than 80 members and friends of the Cheshire Branch were at the cricket club to enjoy several games of bingo, a raffle, a bottle cork raffle and an auction of a cake donated by Cuppa and Cakes Macon House Community Group.

There were also stalls selling plants, cakes, jewelry and white elephant items. Our thanks go to Nancy Dutton who donated £250 raised from selling various knitted items throughout the year, and a further £65 donation from Arthur Chorkley from the sale of plants.

Those who attended enjoyed scones served with jam and cream and, of course, a bowl of strawberries and cream! At the end of the evening Chairperson of the Cheshire Branch of the MND Association, Julie Williams, thanked everyone who had supported the event, including many local shops and businesses for their generous donations. To date, this year’s Strawberries and Cream event has raised more than £800.

The Firs School, Chester donates £5,000

From left to right: Geoff Faulkner, Mrs Longman (proprietor of The Firs), Julie Williams (MND Association), Cath Jeffries (Wirral and Chester Renal Group), Becky Patton and Rev Longman (proprietor).

Parents at The Firs School in Newton Lane, Chester raised £10,000 for two charities of their choice at a ball held at the Doubletree by Hilton Hotel (formally known as Hoole Hall Hotel).
Members of the parents’ committee, Becky Patton and Geoff Faulkner, handed cheques for £5,000 each to Julie Williams of the Cheshire Branch of the MND Association and to Cath Jeffries of the Wirral and Chester Renal Group. The ball, which was held on May 16th raised funds via a raffle and an auction. Generous parents donated prizes for the auction including five tickets for a Liverpool football match, children’s bicycles, a holiday on the isle of Anglesey, a personal chef to prepare dinner for 12 guests of your choice as well as tickets for a Madonna concert.
Julie Williams said: “We are delighted and very pleased to accept this cheque from the parents of the Firs School pupils. It is very much appreciated and will be used as the parents requested; for further research into this terrible disease.”

Arley Hall Garden Festival

Members of the Motor Neurone Disease Association manned a stall at the Arley Garden Festival on June 27 and 28 in order to raise awareness of the disease.
Now in its 15th year, the Garden Festival has become the flagship event in the Arley Calendar with hundreds of fantastic flower and plant displays from all over the country. The floral marquee was in full bloom with a number of award-winning displays with plenty of plants available to buy. Festival-goers were also able to sample the Pimms and Champagne bar, enjoy a barbeque and indulge in an ice-cream while taking in the sounds of a jazz band.
Lord and Lady Ashbrook were happy for the Cheshire Branch to set up the stall which was manned by members and friends of the Branch. One hundred and fifty pounds was collected in donations and the sale of raffle tickets.

Money raised at Hankelow village Fete

On Sunday 14th June, a glorious sunny day, the village of Hankelow held its annual fete. Each year all monies raised in the raffle is donated to charity.

In recognition of one of the villagers, Mr. Tom Bourne, who has been living with Motor Neurone Disease since October 2001 the organisers decided this year to donate 50% of the proceeds from the raffle totaling £500 to the Cheshire Branch of the MND Association.

Organisers allowed the Branch to run a stall free of charge at the fete, which was manned by members and friends of the Branch, and £55 was raised from the crafts and quality items sold.

The fete was very well attended with stalls selling a range of goods from plants to cakes. There were also activities for the children (and parents) including maypole dancing by Audlem St James School, Musiclands young musicians, and Cheshire Academy Gymnastics. Last but not least there was the 50 yard dash for young and old.

MND sufferer to sail the Atlantic

This year is the 30th anniversary of the MND Association. MND Awareness Week takes place June 20 to 28.

Robert first developed symptoms of this degenerative and incurable disease in September 2007 but was not officially diagnosed until June 08. Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones and leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The most famous sufferer is probably theoretical physicist Stephen Hawking. Robert’s speech has been affected and he can’t actually speak at all now. However, he is continuing with plans to sail across the Atlantic in November as part of the ARC Race (Atlantic Rally for Cruisers) when he will be in charge of all navigation on his 57ft boat, a Beneteau 57. He will be taking part in the 2,600 mile race from Gran Canaria to St Lucia with four other crew members.

Robert does not have a sponsor for the race, the crew is paying for the trip themselves, but they are looking to raise money for MND and all money they raise will go straight to the charity. Robert tells me that no-one suffering from Motor Neurone Disease has every crossed the Atlantic in this way before.

Awareness Week

June 20 to 28 Motor Neurone Awareness Week

The Motor Neurone Disease Association is posting billboards on many station platforms in the Northwest, including Chester station, as part of the Motor Neurone Awareness Week (June 20 to 28).
The posters will be on display from June 15 for two weeks and show a picture of Sarah Ezekial, who was diagnosed with this debilitating degenerative disease in April 2000 when she was 34 years old and seven months pregnant.
Details are also given on the poster of a link to www.sarahsstory.org.uk, a shocking and disturbing short film which shows the physical deterioration sufferers often undergo. The film was deemed too shocking for TV but was shown in some cinemas in the area (including Vue at Cheshire Oaks) and can now be viewed online.

General information relating to MND

Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.
In recent years there is evidence to suggest the incidence of Motor Neurone Disease (MND) is increasing. This could possibly be due to more accurate diagnostic testing. Also, as people are generally living for longer, the incidence of a disease more common in older people will continue to increase.

MND Statistics

Motor Neurone Disease is not infectious or contagious.
It can affect any adult at any age but most people diagnosed with the disease are over the age of 40, with the highest incidence occurring between the ages of 50 and 70.
Men are affected approximately twice as often as women.
The incidence or number of people who will develop MND each year is about two people in every 100,000.
The prevalence or number of people living with MND at any one time is approximately seven in every 100,000.

Contact me for case studies on helenswords (at) sky (dot) com

Arley Hall Gardens

For a press release relating to MND Awareness week and what the MND Association Cheshire Branch is doing at Arley Hall Gardens in Northwich click here. Pics are also available to download.

Hankelow Village Fete

For a short press release on Hankelow Village Fete and how visitors can help the Motor Neurone Association in Cheshire click here. Pictures are also available to download.

Introduction

Hi

I am the volunteer press and PR officer for the Motor Neurone Disease Association's Cheshire branch. I will be writing about this terrible degenerative disease and the work that is being done in Cheshire to raise money to defeat it. I will also be posting information from head office about motor neurone disease generally. If you have any comments to make I would really welcome them.