MND Association. Norfolk, Norwich and Waveney Branch

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News archive - 2016

 

Viva Voices Cheque

21st December 2016 VivaVoices Support the MND Association.

For those of you living in Suffolk, this is just a flavour of the wonderful fundraising supported by the MND Association Suffolk Fundraising Group.

 

Graeme Hopson and his choirs, who sing under the name VivaVoices, raised £2,300 for the MND Association at their concerts spread across Norfolk and Suffolk. This is a record amount for them to raise in their concerts.

 

The photo shows Janet Oliver receiving a cheque from Graeme.

 

 

 

Freemasons
Cheques

15th December 2016 Charity Giving Night

Francis of Lorraine Lodge No 6906 is based in Norwich and the picture shows the Charity Steward Peter Leggett (left) and Worshipful Master David Clarke (right), presenting the donation.

 

This was part of a Charity Giving Night where a total of £6,000 was donated to eleven local charities.

 

The money was raised by the members, friends and families at lodge meetings, social events and personal donations.

 

Sue and Jo Heal were pleased to attend the event to collect the cheque on behalf of the branch; we were made very welcome.

 

Sue was invited to say a few words about the work of the MND Association.

 

We are very grateful for their contribution to our work.

 

 

 

 

1st December 2016 Charity Football Match cheque presentation

Chinny's Bar

Malcolm was invited to Chinny's Bar, Halesworth to receive a cheque for £1834.72.

 

The money was raised at the Charity Football Match held on 30th October in memory of Mitchell Block.

 

The photo shows Malcolm, Sonia Ablett, Karley Block, Paul Ablett and Carl Chinnery. Carl is the licensee of Chinny's Bar who generously added £100 to the sum raised at auction for the Norwich City shirt (pictured in the article written for 30th October).

 

 

 

Financial impact of MND - Please help by completing the survey before 27 January 2017

The Association is aware that MND can cause a huge financial impact on people living with MND and their families, but would like to understand more about that and what needs to be done to support them. If you would like to help research the financial impact of MND please click here to find out more and to complete an online survey. There are two surveys, one for people living with MND and the other for those who have lost someone to MND.

 

If you have any questions, please email Simone: simone.vibert@demos.co.uk or call Demos on 020 7367 4200.

 

Thank you in advance for your help.

 

If you would prefer a paper copy please contact Helen who can post one to you.

 

 

The MND Charter.

The MND Charter was launched in June 2012.

 

The five points of the Charter are:

 

1. The right to an early diagnosis and information

2. The right to access quality care and treatments

3. The right to be treated as individuals and with dignity and respect

4. The right to maximise their quality of life

5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.

 

By the end of 2012, the Royal College of GPs, Royal College of Nursing, the Association of British Neurologists, the Chartered Society of Physiotherapy, the Royal College of Speech & Language Therapists and the College of Occupational Therapists had signed the Charter. In 2013, the British Dietetic Association signed the Charter, HRH The Princess Royal hosted an MND Charter roundtable, and Oxford City Council became the first council to adopt the Charter. By January 2014, 15,000 had signed the Charter, and in October of that year 700 Ice Bucket Challenge supporters added their signatures to the Charter. In March 2015 over 25,000 had signed the Charter and in May, 16 councils adopted the Charter. By June 2015, 33,630 people had signed the Charter which was presented to the Prime Minister at No. 10 Downing Street.

 

The launch of Champion the Charter came in March 2016. The Charter is used in local communities to help raise awareness of the rights of people with MND and their carers. On the 10th of November, Sue Heal approached Councillor Joe Mooney to ask if he would help us Champion the Charter in Norfolk. He acted swiftly to set up a meeting. Cllr Mooney, in consultation with Sue and Alice Fuller, Campaigns Manager (East), has written a motion asking Norfolk County Council to support the MND Charter. The motion had been added to the agenda for the next full meeting of the County Council to be held at County Hall in Norwich at 10am on 12th December. Unfortunately owing to the volume of items on the agenda the motion in support of the MND Charter has been removed and will instead be presented to the Adult Social Care Committee on 23 January 2017. The branch will still be able to attend in January to raise awareness of MND and the importance of the MND Charter.

 

If anyone is able and would like to attend the meeting, please contact Sue (by email) who will be able to give further details nearer the time.

 

Article in Eastern Daily Press

Article in Norwich evening News

 

26th November 2016 Bucket Collection at Notcutts

A team of 6 volunteers braved the cold on Saturday to collect in aid of the Norwich & Waveney Branch of the MNDA. The grand total collected was £242.79. We were pleased to meet volunteers from Marie Curie, who were also holding a collection at Notcutts, and to learn a little more about their work. Marie Curie provides care and support to people with terminal illnesses and their families, including people living with MND in Norfolk.

 

We have agreed to hold a further bucket collection at Notcutts in June during our awareness month - any one who would like to volunteer to help should contact Sue by email. We will arrange a date in the New Year.

 

We will be back at Notcutts on 18th January for our first coffee morning of 2017.

 

Sunday 20th November 2016 Wortwell Open Meeting

Forty people attended our open meeting at Wortwell. Hot drinks were offered on arrival. There was plenty of time to socialise and to meet with Alun Owen, Chair of the Board of Trustees. A number took the opportunity to buy Christmas cards and MNDA merchandise, and of course raffle tickets!

 

The Butchers Shop Swanton Morley cooked and served an excellent lunch of turkey with all the trimmings, a selection of vegetables, roast and new potatoes, followed by a traditional Christmas pudding with cream. The tables were decorated to provide some early festive cheer, and with some encouragement most pulled their Christmas crackers and donned party hats! There was a lovely atmosphere.

 

Terry and Linda gave a brief demonstration of the safe sip cup covers that Terry likes to use. Linda's first attempt caused everyone to laugh as she kept the straw straight and gave Terry an unexpected shower! With the straw bent the cup covers prevent the cups from leaking when they are knocked over. This should not be taken as an endorsement of the product by the MNDA, but if you are interested to see what it looks like then follow the link https://www.facebook.com/SafeSip/ Terry then introduce Alun by suggesting that this was the time to leave or go to the bathroom – a little harsh!!

 

Alun gave a short address in which he spoke of his partner's death from MND. This motivated him to get involved with his local branch, and then later putting himself forward unsuccessfully to become a trustee. Fortunately for us all he was successful on his second attempt, and is now the Chair of the Board of Trustees. It was at this point that he realised that he could go to jail if ever there were problems with the Association, a powerful incentive to ensure that everyone involved behaves with integrity. He outlined some of the Association's achievements over the past years – and congratulated the Norwich and Waveney branch on completing its first 21 years and raising £1,000,000 during that time. Malcolm was one of the founding members of the branch and still puts enormous energy into his role as Chairman.

 

7th November 2016 - Duke of Wellington

Duke of Wellington
Sandra Mahn with Kay Edwards, licensee of Duke of Wellington, and Malcolm

Thank you to Sandra Mahn and the managers of the Duke of Wellington on Waterloo Road, Norwich, NR3 1EG. Initially they put MND Association collection boxes in their pub for six months from the start of September 2015 – but then kept them there for longer. They also hosted some fundraisers on our behalf and in memory of Sandra's brother who was living with MND.

 

When we first publicised the location of the collection boxes we hoped their clientele would be generous – indeed they were! On Monday the 7th of November Malcolm went along to receive a cheque for £625. Once again our thanks to everyone who helped raise funds and awareness of MND.

 

 

 

 

6th November 2016 - Christmas Charities Fair

It was lovely to receive an email thanking the Norwich & Waveney branch of MNDA and our team of volunteers (Cilla Godfrey, Shirley Basey-Fisher, Sue and Jo Heal) for taking part in the Charity Christmas Fair at GreenAcres Colney. Together the Charities raised at least £900 altogether which is fantastic.

Stall

 

Our stall raised £198.20, the highest stall total, which was very pleasing! We hope you agree that the stall (as pictured) looked very good, and that the new merchandise produced by the MNDA is of interest to many - certainly the bags help to raise awareness of the disease.

 

Beth, who was responsible for organising the day wrote, “It was a great day with a fantastic atmosphere, and more visitors than last year too (125+!), despite the pouring rain in the afternoon.” We enjoyed the event and were pleased with the result. GreenAcres are providing match funding for £50; it usually takes around six weeks for the doubled amount to reach our account.

 

This is the last Christmas Charities Fair organised by GreenAcres, although they will continue to welcome charities and organisations to hold events there. We are very grateful to them for allowing us to have a stall for many years.

 

 

Three Ladies
From left to right Sonia Ablett, Angie Sankey (who bought the shirt) and Wendy Hotchkiss

30th October 2016 Charity Football Match

Karley Block organised a Charity Football Match in memory of her father Mitchell, who died from MND in 2015. The 10:30am kick off took place at Wenhaston Playing Field between teams from Wenhaston and Halesworth; Wenhaston FC beat Halesworth FC 4-1.

The photo below shows both sides and referee before kick off. The match was followed by a barbecue and raffle at Chinny's Sports Club in Halesworth. Malcolm attended on behalf of the branch, and took with him the Norwich City shirt that he had bought at the MNDA Autumn Ball - it was auctioned off after the raffle and made £242 - with further money donated by Chinny's. The shirt was bought by a Norwich City fan!! The final sum raised was £1,834.72. That really is a great result; we would like to thank everyone who was involved in the event.

 

Charity Football Match

 

 

Inspire Races

29th October 2016 Inspire Races Steeplechase.

The weather for the Mucky races was good - it didn't rain! The cakes etc made £900+, and the bucket shaking at the gates £300+.

 

Some extra money was raised by people giving massages, the RAF display and sale of surplus pumpkins. Just short of £1,400 was raised on the day - we away look forward to seeing the final total.

 

The photo shows Penny, Malcolm and Judy, who took the bucket collection on the day.

 

 

 

 

 

 

 

8th October 2016, Charity Autumn Ball

The Ball, at Marriott Sprowston Manor, provided a very pleasant occasion for those able to attend. It was a good opportunity for friends to meet and chat, and in many cases remember those who have lost their lives to Motor Neurone Disease. David Willis provided the paparazzi experience where everyone was able to have their photo taken. Thank you to Cilla who delivered the beautiful floral displays. The paparazzi photos are available to download by those who bought tickets to the Ball. Amie will be sending round an email with a password to those who have not received it already. We hope to have some general photos to add to the website soon and to be able to release the final sum raised.

 

The three course meal seemed to be enjoyed by all. Raffle prizes were drawn after we had eaten – Anthony and Lorna were delighted to win the first prize – the use of a Mini for the weekend. There was a pleasing level of interest in the bidding for football shirts with prices paid reaching £100+. We were entertained throughout by the Tesla Jets and a local DJ who provided music through to the end at 1am when the dancing ended! We thank them for providing their services free of charge enabling more of the ticket price to be donated to the MND Association.

 

We would also like to record our huge thanks to Amie Godfrey for masterminding the organisation of the evening, and to those who helped behind the scenes. Thank you to Roger Widdecombe, Regional Fundraiser for East England, who provided support and joined us, with his partner, on the night. Thanks also go to those who provided prizes for the raffle, and to those who bought tickets and helped make the evening such a success. The evening raised £2,136.65.

 

 

2nd October 2016 MND Association Dog Walk.

Jo Fuller organised a sponsored dog walk in support of the MND Association. The walk began at the Avenue Pub, Great Yarmouth. Jo suggested that perhaps a former MND patient was looking down on them as the sun shone and the weather could not have been better. The day went well! The walkers, with 16 dogs in total, raised £400. Thank you to everyone involved.

25th September, 2016 Cricket supports the MND Association

by James Skilleter

The annual memorial cricket match for Richard O'Flaherty was held on Sunday 25th September at Ashby Cricket Club near Thurton against the James Skilleter XI. Team photos and a minutes silence preceded a 25 over match played in good spirit. Richard's brother Chris was in attendance to support the match.

 

Ashby batted first but only Pepper (12) managed double figures from the top six as accurate bowling from Simon Key (3-5) and 11 year old Oscar Skilleter (3-13) saw the Ashby batsmen struggle on a useful pitch. A late rally from Rusted (22) and Jakeman (12) took the home tally on to 92 before they were all out. Dan Littlechild took 2-12, with other wicket takers being Dan Taylor & Andy Baker.

 

In reply the Skilleter Xl made a rapid start as brothers Lewis & Dan Taylor put the Ashby bowlers to the sword. Lewis (28) found the boundary four times including two huge sixes and Dan (25) found the boundary five times. Once both these retired, junior brothers Oscar Skilleter and 13 year old Harry Skilleter took over. Oscar was bowled for 2 but Harry played a mature innings of 17 also finding the boundary twice. Littlechild (4) came and went before Douglas Young (11 not out) and James Skilleter (4 not out) saw the Skilleter XI home by 7 wickets. Paul Thorburn was the stand out bowler for Ashby with 3-10.

The presentation of the shield to winning captain James Skilleter was made by Alan Cook along with Chris O'Flaherty. This was followed by a raffle. A total of £324 was raised for the MND Association. Thank you to everyone who came and supported the event.

 

 

10th September 2016 Annual General Meeting

Sally Light sends a message to the Norwich and Waveney Branch. Click the image below to see the video on a new page....

 

 

 

21st August 2016. Sprowston Family Fun Day

The fun day was indeed fun, but the weather was against us and their were fewer people in attendance than last year. However, we still made £489.21 for which we are very grateful. Thank you once again to Amie Godfrey for organising the event.

20th August 2016. Eileen Clarke Fundraising Cheque

Eileen Clarke

Eileen Clarke, on behalf of Pulham Market Methodist Church, has been a fundraiser for a variety of charities over the years, each time working with a band of helpers. She chose to support the Norwich and Waveney Branch of the MNDA to receive £1,160.67 from her final fundraising event. Eileen had known Malcolm's brother John, who died of MND in August 1997.

 

Malcolm gave a short talk on MND and the work of the branch at the conclusion of one of their events just before the raffle was drawn.

 

The event was held at the Pulham Market Memorial Hall. The photo shows Malcolm thanking Eileen and all her helpers for supporting MND.

 

 

6th August 2016. Horsford Bowls Club Barbecue

Cheque presentation

Malcolm, our chairman, was invited to a barbecue hosted by the Horsford Bowls Club to mark the end of the outdoor bowls season. Over the course of the year the club held a variety of events to raise money for the MNDA. Malcolm attended one on 21 April at which plants, garden produce, books and bric-a-brac were available for sale.

 

At the barbecue John Bugg presented Malcolm with a cheque for £1,000 to be used in support of people living with motor neurone disease in the Norwich and Waveney area. We are very grateful for the support of the club.

 

The photo shows John presenting Malcolm with an envelope containing a cheque!

 

 

 9th July 2016 Fundraising event at Lowestoft Football Club

Judy Burns-Thomson was delighted to receive cheques to the value of £2,742.59 from Linda Tipper at the Cherry Lane coffee morning on 27th July. Linda later wrote, “The evening was a real team event, without the help of all my family and friends it wouldn’t have been such a great success. Lots of people have helped me to obtain as many raffle prizes as possible, 118 in all which was a fantastic response from all individuals, retail shops, tea rooms, hotels, pubs, photography studios, local crafts, bakery and bespoke cupcakes. I was truly overwhelmed by everyone’s generosity.

 

I would like to say a BIG thank you to my daughter for donating money that paid for the children’s entertainer as well as my son for DJ’ing with a friend's boyfriend who was over from Barbados. All people that helped make this evening into a fun filled family night for which I will be forever grateful. I think everyone young and old thoroughly enjoyed themselves and helped raise funds for a fantastic charity that is obviously close to my own heart.”

 

11th June 2016 Sue Heal's Silence Speaks Event

Sue Heal - silence

Jim, my late husband, began to lose his voice soon after diagnosis. Although as a family we could still understand him, it took careful listening and concentration to take in what he was saying. In due course the MNDA loaned him a Lightwriter and, for a long time he was able to use this to communicate quite well. He used to ask us to say what we thought he was going to write as soon as we knew, since it would save him the tiresome process of typing the whole thing out. This was important because after a while he could only use the little finger on his left hand – he was right handed. We noticed the frustration he experienced when his shorthand was not understood or, in company, when the conversation had moved on before he had finished typing his input – we knew to wait!! In due course Jim developed frontotemporal dementia and was unable to spell and later to recognise the words he wanted – after 6 years plus of struggling to communicate he entered a phase that was to last over a year when he could only communicate by blinking – and this wasn't very reliable.

 

And so it seemed that a sponsored silence of just 8 hours should be easy enough. But my nearest and dearest know that although by nature I am shy, I love to talk and sometimes find myself talking too much – the Norwich and Waveney Branch Committee will attest to that! My sister's reaction was, “Ha, ha! Good luck with this one”.

 

I signed up, and made arrangements with the Virgin Money Lounge in Norwich to stage my silence in public so they could confirm that yes, I really had been very very quiet!! I took the branch spring roll, 300 leaflets provided by national office, and two collecting buckets to the lounge. Then on Saturday the 11th June, wearing my Silence Speaks t-shirt, I went along and got set up. I was asked to brief staff on what MND is, why the silence was significant and generally to enthuse them. They needed no help from me to become enthusiastic supporters – they were brilliant – especially Robbie who gave me coffee within minutes of my arrival – clearly a man with telepathic skills! At 09:11 I began my silence.

 

I handed everyone a leaflet as they went into the lounge – most people took one, and the manager assured me he saw many reading them. It was an excellent event on the awareness raising front. The hardest part was responding to children with their quick fire questions – can you speak?, why aren't you talking?, and so on. Indeed there were several adults who wondered if I was able to speak; I had to point to my t-shirt and the sign that said, “I'm doing a sponsored silence”. One man asked if I could hear, well “yes” but I had to write my answer! I nearly came unstuck when I handed a leaflet out and realised it was upside down; I just wanted to say, “Sorry”. Some parts of speech are instinctive. I began to realise how difficult it is to lose the ability to speak – and that was in 8 hours not the 6 years plus that Jim had experienced. I held a bucket and hoped that many of those using the lounge would make a donation on the way out – we raised £99.87 in total.

 

As it was the Queen's birthday weekend the staff at the Virgin Money Lounge hosted a birthday tea with cucumber sandwiches, scones and cream available for a donation. They also provided a raffle. The proceeds of £233.36 were split between the MNDA and the Virgin Money Lounge charity of the year, giving us £116.68.

 

Online my sponsorship has reached £260. Off line sponsorship has reached £72. To date the total from all sources, including Gift Aid, is over £500, and because the event has raised over £400 the Virgin Money Lounge will apply for matched funding – they cannot promise that we will receive it, but if we do, they match up to £400 taking us close to £1,000. Thank you to everyone who supported me.

 

 

21st June 2016 - Global ALS/MND awareness day.

Researchers around the world are working together towards a world free from MND. Follow the link to read about their work as they try to find causes of MND, and treatments for this disease.

 

https://mndresearch.wordpress.com/2016/06/21/working-together-towards-a-world-free-from-mnd/

 

 

9th June 2016 Cheque Presentation

Cheque presentation

Karen Grapes ran the 2016 London marathon in memory of family friend Ryan Harman who had MND. During her training Karen ran over 450 kilometres and on the day completed the marathon in 4 hours 25 minutes and 21 seconds.

 

Sponsors helped Karen raise over £550 for the MND Association. She approached her employers, Roys, for help in increasing the total amount raised. They donated £200 from their Making a Difference Locally Fund.

 

The photo shows Ed Roy (managing Director) and Karen Grapes (Roys Dereham store manager) presenting a cheque to Malcolm Chubbock (Chairman of the Norwich and Waveney branch of the MND Association).

 

 

Silence Speak

Imagine an hour.... a day.... a week without speech – this is the reality for many people living with MND.

 

The MND Association are looking for lots of supporters to take on the challenge and sign up for this years ‘Silence Speaks’.

 

Silence Speaks is more than just a sponsored silence, its about finding other ways to communicate. Whether you are taking on the challenge on your own, getting your workplace involved or taking part with friends and family, we have all the tools and information you need to help you. To get involved and take part in Silence Speaks simply visit and register at www.mndassociation.org/silencespeaks or contact Roger Widdecombe, your Regional Fundraiser Tel (01908) 508398 or email roger.widdecombe@mndassociation.org Remember to say that you would like the money raised to go to the Norwich and Waveney Branch.

 

You can also visit the Volunteer Zone on the MND Association website http://www.mndassociation.org/ to get lots of hints and tips to help with your fundraising.

 

Supporting Silence Speaks will make a huge difference to people living with MND. We know that more than 80% of people living with MND experience communication difficulties, and for many this can be the hardest part of the disease. So, why not sign up today and ‘lose your voice to help others be heard’.

 

There is also a NEW teacher and youth leader pack for 2016 with lots of ideas and useful resources to engage young people in the event which we would be happy to send to any schools, colleges, universities or youth groups you may have contact with.

 

Thank you for your support to Share the silence.

 

 

6th March 2016 - Branch AGM

The Norwich and Waveney branch or the MNDA held its 21st Annual General Meeting at St Andrew's Church Hall. Sadly attendance was low - we'll avoid Mother's Day next year - but those who came seemed to enjoy the event. The AGM itself was short and efficiently chaired by Malcolm. Helen Devlin was formally elected as the branch secretary, and Malcolm agreed to continue serving as our Chairman. Lindsay Goward presented long service awards to Malcolm and Judy - and left an award for Sue Kitson together with a 'Thumbs Up' rose bush. Isabel Coe, of East Anglian Drivability, gave a very interesting presentation looking at all aspects of providing assessment and advice both for drivers living with disabilities and for passengers with mobility difficulties. She threw a few questions out to the audience which made us think! For initial advice and information and to check for your nearest Driving Mobility Centre call 0800 559 3636 or visit the Web: www.drivingmobility.org.uk or Email:

Info@drivingmobility.org.uk A link to East Anglian Drivability can be found on our Useful Links page.